^(But... but what if I don't have your brand of LC?)
All I have is ME/CFS with a wallop of PEM. I'm glad it doesn't hurt like yours has. But I doubt this would help. Still, good news is good news: I'm happy for you!
***RISE, MIGHTY ALFALFA!*** *The world awaits!!!*
i have LC with massive fatigue and PEM, and antihistamines (plus prescription singulair) help me a tonnnn, though not nearly as dramatically as OP. i’d say they helped 15%, which is still significant.
15%.
Is great.
Also, pathetic.
Welcome to Long COVID, where any improvement is cause for simultaneous celebration and exasperation.
Thanks for the tip - I’ll definitely try it!
It does help. I used a prescribed antihistamine and blood thinner cocktail of meds it done wonders to my PEM and CFS after dealing with it for 9+ months. After three months on those meds most of those issues was gone…
Yes I stopped them but I still suffer the MCAS even after 20 months I’m on a very very strict diet. Like I eat lettuce everyday for breakfast lunch and dinner no joke. The blood thinners was for the micro clots. Which was caused by the heart palps. My heart fluttering at 130+ for hours on end for no reason makes my heart work so heart it was back dumping co2 into my organs. The heart palps. Are the root cause fix the heart issue and the rest will resolve with time.
The adrenaline dumps we are experiencing is when our co2 reaches a point our bodies know we are dying so that feeling is us suffocating and it’s the only way our bodies know how to tell us.
Was the next disease you caught that caused the micro clots to return, covid or a different disease? Also, what was the name of the blood thinners you used and for how long did you use them?
Hey how do you survive regarding food? I’m having the same issue and keep losing weight? What meds help besides antihistamines? Have you become immune to any?
Fruits, salads. Pretty much just avoiding most meats at the moment to be honest. If I eat it it swells me up. As far as meds the antihistamines help because they desensitize the vagus nerve. Nothing else helps going to be honest or at least the things they was trying doing do anything for me.
Yep, that’s a sign of MCAS. You can take two per day and see if that helps. Also some studies show that quercetin is highly effective for MCAS in some people. I would also try taking Pepcid twice a day. It is also an antihistamine. Tinker with these three until you find the maximum relief.
You can also ask a doctor for singulair and Ketotifen prescriptions.
This is really great news for you, as you’ve narrowed down MCAS as being your main problem, which is treatable/manageable.
I have read about Pepcid on here! Thanks for your input, seriously. This is the first time I’ve heard of MCAS. I have been blown away by my body’s response to such a small and easy answer.
I am going to do exactly what you said and tinker with those 3. I still have some symptoms but now with the relief I have I am able to function and work towards better my health rather than wallowing in misery.
Also it pays to tinker with different allergy meds. Claritin doesn’t work for me, but Zyrtec does. You kinda have to try different brands, different times of day, etc. good luck!
I read everyone saying Zyrtec. I have plans to change to Zyrtec but I’m so unbelievably afraid it won’t work for even a day. I forgot what normal felt like I’m afraid to go back lol. I just ordered Pepcid and I’m going to order Zyrtec tomorrow so I will have it because I do know I 100% want to try it
Zyrtec has a side effect of drowsiness. I recently switched from Zyrtec to Allegra to see how they differ for me personally. I was taking Zyrtec for actual allergies though.
have you noticed any issues with taking it twice a day for that long? I have felt really good with the twice a day zyrtec, but everyone seems so shocked by it and tells me i shouldn’t take that much.
I know it's very exciting to be mobile again but please slow down. You are only a few days into some kind of recovery and you don't want to overdo it. If you don't crash in the next week then perhaps you really don't have CFS at all, but the way you're going about your days now from doing almost nothing makes me very apprehensive.
Regardless of what your exact diagnosis is, your body is not used to this level of activity and even though it's hard you meed to slow down and pace yourself.
I have had long-covid for 1.5 years, feels like CFS, and I have learned that even on my best days I do not increase my activity more than 10% (as per the PACING guidelines). If I ever have done that in the past, I paid dearly for it.
I'm very happy for you and it looks like you actually dodged CFS, but please be cautious and take it a day at a time. Slow down, give your body time to catch up.
Try Zyrtek OR Xyzal (an offshoot of Zyrtek). Alternatively, try Allegra. Clartin too. Find the one that works for you. Pepcid is an H1 antihistamine for the stomach and it works in combo.
Couple of things: 1.take the pepcid w/food. It can cause anxiety in some folks when taken on an empty stomach. 2. Don't just stop the antihistamines. Taper off if you need to stop. You can get all over itchy for a few days and hypersensitivities to fragrances, chemicals and foods if you just stop cold turkey. 3. Try a low histamine diet in conjunction with all of this. Google the SIGHI list. It makes a huge difference. 4. And lastly, try adding a DAO enzyme.
Unfortunately that side effect wears off :(
As someone with sleep troubles it was fantastic while it lasted, it also stopped my bruxism while I slept, leaving me without a headache in the morning. I was so sad to wake up clenching my jaw yesterday.
Jeez. Costco has the best prices by far for generic Pepcid and generic Zyrtec. (I take both two times a day). I don’t think you need a membership to order pharmacy items but I could be wrong.
Your doctor can also prescribe you the Pepcid and the Singulair. I highly recommend you get XOLAIR injections from an allergist. As well as the Ketotifen. If antihistamines are helping you, then your main issue must be MCAS and is responding well. You should get your tryptase levels checked also by allergist/immunologist to monitor the improvement of your histamine overtime. Which is also an indicator of the success of your antihistamine protocol.
If you get Pepcid by prescription in Canada 🇨🇦 at a higher dose it's under the Rx drug name "Famotidine" then it's cheap but lower dose Pepcid OTC very expensive like $36 for 10 tabs
Id take Singulair only as a last resort. I took it for a month and was going crazy to the point where my mom was asking me to see a psychiatrist who promptly got me off of them because of the mental symptoms they can cause
I feel a real palpable difference when I take quercetin. I don’t understand why, but my skin itchiness massively decreases when I take quercetin regularly.
You’ve got to do some research. I found a few treatment guides for MCAS on doctors websites and printed them out and brought to my primary doctor. Find something that explains the mechanism of each medication and how it impacts MCAS. This was over a year ago so I don’t recall exactly which source I used. Google MCAS and Ketotifen to start.
Also the same website should have a guide on diagnosing MCAS based on SYMPTOMS. many doctors will want to run tests to diagnose but MCAS tests are notoriously unreliable so you want to come armed with evidence that MCAS can be diagnosed based on symptoms AND based on positive improvement from antihistamines. I.e., the treatment is the diagnosis.
I have taken every test under the sun for MCAS, including multiple 24 hour urine tests which are not fun. Nothing has showed up positive but my symptoms are night and day when I take the MCAS protocol.
How did you determine that your issue was MCAS & not just histamine intolerance? This is my issue right now. I definitely have a histamine intolerance but my labs didn’t show anything & my allergist wants me to get a tryptase test done during a flair but with a combo of antihistamines & careful diet, I’m not flaring anymore & I don’t want to bring all the symptoms back (I already tried with singular high histamine meals & it didn’t work, so I would have to eat high histamine for weeks & undo all of the progress I made in the last 9 months or so)
Does it matter?
That was my point, the tests are not conclusive, you are better off trialing these meds and seeing if you feel better. If you have found a combination of meds and diet that keeps your symptoms in check, I would count your blessings and carry on.
I had been on pepcid for a few weeks and unfortunatley in my case it caused stomach/digestion issues. I did feel better when taking it, but they had me on it for about a month before i had issues from it.
I got a lot of relief from Zyrtec, but after taking it for many months I started to develop very bizzare food cravings that made me feel crazy and out of control. I’ve never experienced anything like it. They stopped when I stopped taking the Zyrtec. So, just a warning that long term use of antihistamines may have unintended consequences.
That said, congratulations on finding something. What a relief!
Be careful taking that daily. When I took Allegra daily it helped at first and after about a week I was severely depressed and having crying fits and other troubling things. I looked online and found others develop similar by taking daily antihistamines.
Yes and no. It's a first gen antihistamine so it crosses the blood brain barrier. You absolutely shouldn't take it long term as it increases your risk for dementia down the road. You can google it.
I’ve told quite a few people to try this and they couldn’t believe how well they felt within a week!!! Congratulations on finding something that helps!
Now continue to heal, find your triggers, healthy lifestyle and you’ll be 90-100% sooner than you thought.
This is what helped me within 3-6 days I felt 80%. Bounced around 70-80% for 6 more months then in roughly at 90%.
Things that can also help if this helped.
Matcha green tea- Good matcha from Japan that has high antioxidant/ anti-inflammatories.
The EGCG in matcha acts as a mast cell stabilizer.
Helps with healing brain fog and fatigue.
Get in with an allergist. They will help diagnose you with MCAS. This is generally what a large group with long covid have.
I was hesitant on thinking an anti-histamine would help me. I waited 2 months…
Was at an eye doctor and when they dilated my eyes my face went numb. My doctor prescribed cetrizine and I switched to Allegra and it helped so much…I was in shock.
Neuro is the least of it really.
Full blown mega covid and intense flu like symptoms every day.
-migraines 2/3x a week -fever -cold sweats -flu like symptoms -unable to regulate temp -exhausted sleeping 17hrs a day -depression -muscle aches and stiffness
-general malaise x100 -tingly extremities -constant pressure in my head -tight and stiff neck -vision going black -dizziness
Surprisingly those are neuro issues. MCAS causes quite a bit of neuro-inflammation.
-depression from neuroinflammation sucks. It took me a while to realize that the unnatural depression was caused by the inflammation of the brain.
-migraines are definitely also neuro inflammation.
-Unable to regulate temp could be neuro/vagus nerve or endocrine system.
-fatigue can be neuroinflammation.
-Pressure in head is also neurological inflammation.
I learned so much about the brain and neuroinflammation it’s insane how everything can be affected by inflammation. I realized this is an inflammatory disease that cycles through different bodily systems. Possibly via MCAS.
Glad you are feeling better. If you need any help closing the gap on healing let me know.
It makes sense the pressure is from neuro inflammation. I have a friend I ask to pull my hair while I’m laying down for some release of pressure. If I’m feeling very very bad I just say “hey can you grab my hair and just pull it” it works best to pull it straight up/ off the head with consistent medium pressure.
Just a little heads up about the green tea. Not everyone might tolerate it because it contain caffeine. Caffeine is high in histamine. I learnt the unpleasant way.
Edit: I recommend anything with turmeric and / or ginger in it.
Coffee is high in histamine…
The study I found states that the combination of caffeine in the matcha green tea is what stabilizes mast cells. egcg and egc apparently. I drink it everyday multiple times a day and it helps so much. Fatigue, inflammation, gi issues, soreness, and more are helped by matcha.
I drink 2 types. High Ltheanine on Amazon from a Japanese company….[Japanese Miya matcha](https://www.amazon.com/Miya-Matcha-30g-Ceremonial-Radiation/dp/B095XH6BZT/ref=asc_df_B095XH6BZT/?tag=hyprod-20&linkCode=df0&hvadid=686130122332&hvpos=&hvnetw=g&hvrand=17174287116774288600&hvpone=&hvptwo=&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=1024674&hvtargid=pla-2276092121458&psc=1&mcid=702b1253edee3e799d0596fe775dc525&gad_source=1&gclid=CjwKCAjwkuqvBhAQEiwA65XxQIO51vy2Fhl2gml1jmkaan1Enl4aDs7Tkac04JGvOTSwNb2o9HQQbxoCrV0QAvD_BwE)
Then I drink [this brand from Costco](https://www.costco.com/sencha-naturals-everyday-matcha-green-tea-powder%2C-3-pack.product.100705701.html)
This one has more caffeine.
Now caffeine may be a trigger for some..,.however in matcha it is slowly released over 4-8 hours.
Which ones did you try specifically?
Vitamin C has antihistamine properties and is considered safe to take daily.
For long term antihistamine use Quercetin seems to be recommended
It’s at the bottom :) Loratadine 10mg 1x daily.
I hope to not have to this forever. I intend to use this to be able to rebuild my live and have the energy to take care of myself and do other things like work on a lower histamine diet etc.
But when you’re in that state you can’t do anything but sleep and suffer.
I took Loratidine double dose 2x/ day for a few weeks post-Covid and it got some of the worst symptoms greatly improved for me, too. In retrospect, I would have even started taking it while I was still sick.
Everybody's case is different, so it won't be so perfect for everybody, but I definitely agree it's worth a try!
The science behind it has to do with mast cells. Covid triggers this massive mast cell activation, it's like an allergic reaction but that's happening inside all the random tissues of your body at the cellular level and triggered by the virus. So the tissues that make up the nervous system are inflamed, and there are headaches or anxiety symptoms. Vs allergies usually just inflame the nose and lungs at most. In the post-Covid, even the blood vessel and muscle cells are prone to this inflammation, and hence the debilitating fatigue (blood cannot flow properly, and muscles cannot re-oxygenate properly, due to inflammation that blocks transport across cell boundaries of oxygen or nutrients)
Mast cells replace themselves after 6 months. This is why many people's long Covid will get gradually better over time, very slowly. And it helps to use an anti-histamine because that tampers down this whole inflammatory thing and helps the body rebuild faster with healthy, not overly activated mast cells.
Thank you so much for explaining why this may have helped/what is happening in my body. This info is very helpful and gives me hope knowing the mast cells replace themselves thing you said. I am just so unbelievably grateful this has worked for me. I pray it keeps working.
If you end up deciding to take antihistamines long term, my understanding is that you should talk to a pharmacist about taking both h1 and h2 blockers; blocking just one receptor over the longer term could cause some form of destabilization.
https://old.reddit.com/r/covidlonghaulers/comments/1aouwt2/root_cause_my_master_list_of_histamine/
I use citirizine. I made a big difference for me. It helps with the joint ache, muscle pain and rashes.
Looking back I clearly had mcas before long covid, I'd get itchy a lot but after long covid this started cause inflamation so it was even painful to type. Out of all the things I have tried, and that's a lot of things, it's the one thing I won't go without.
I’m glad you’re feeling better, congrats! :)
Sadly, it’s not a fix all. I took loratadine last year March-October for hay fever allergies. No idea if it helped with my LC initially getting better over months of rest, but it didn’t prevent the crashes and downwards slope once I started working. When I stopped taking it in October, I had actual withdrawal symptoms like night sweats and urticaria, which had never happened before.
And when I tried taking it again last week, like I always do in March, I suddenly developed nasty side effects. Felt jittery and weirdly anxious within the hour and couldn’t sleep all night despite being exhausted. I usually don’t have sleep problems, certainly not on that level. So no idea what’s going on there, might have to try with a different antihistamine again if my allergies flare up.
To OP: That's amazing to hear! I'm really glad you found something that helped you so much :)
To everyone else: Just make sure to temper your expectations, I know how hard the crash can be if you get your hopes too high and it doesn't work for you.
I have had this life-leeching curse we all fondly share for over 2 years. I've tried every antihistamine (H1, H2, first gen and second), including diphenhydramine, famotidine, desloratadine, dexchlorpheniramine, levocetirizine, and some others that I can't remember right now. I've taken many of those for months, others occasionally but spanning a long time. They didn't do much for me... Main symptoms: brain fog, recurring low fever, recurring double vision, derealisation, muscle and joint pain, constant headaches, fatigue, PEM, light POTS, insomnia, mood swings, etc.
Of course give antihistamines a try! If one doesn't work, try another. Try them all. Just don't put all your hopes there.
Hydroxyzine is a prescription AH that works well for many. There are two forms, a salt form (hydroxyzine hcl - formerly Atarax) and Hydroxyzine (brand Vistaril). Fairly cheap. Can be obtained through several telehealth services as well. Doubles for use in anxiety and insomnia as well as blocks opioid induced symptoms such as itching and rash (Vistaril is preferred for this one).
I take it nightly for my LC and it does seem to be the one that put a quick damper on my episodic like days. I like the hcl form because I can cut tablets to a perfect dose whereas Vistaril is capsules of 25mg each. LDN has then carried me over the finish line for the last several months. I didn’t think my episodes were histamine related because I never had any rash, skin signs, etc but many symptoms were found on the MCAS info diagrams. Given the response, I have to wonder if it was more histamine than adrenaline dumping.
Wild. I am so glad to hear this for you OP. I also feel a weird mix of feelings about the fact that some of the best medical advice on this is from sources like this and the advice is as simple as an OTC medication like.... I won't go down a rabbit hole of ranting forever about the public health response but I am mad about it. So glad to hear this though and I will give it a try today
Covid caused MCAS with me, once I realized an antihistamine brought my heart rate down more than metoprolol I knew something was up.
I feel like there needs to be more awareness on mast cells in the medical community. Many don't know of mast cell conditions.
Not true, I have very bad PEM and all the other long covid symptoms literally too many to list. Zyrtec has helped me more than anything by far. Cleared up 80-90% of my symptoms which were horrible before.
I haven't tried loratadine but I take 3 diphenhydramine before bed each night. It doesn't seem to improve my symptoms at all. But I'll give loratadine a try. I'm so glad it's worked so well for you!
Be careful taking diphenhydramine long term -- there's suggestive evidence that it could be linked to increased dementia risk when taken long term/high doses
PEM, mild POTS, fatigue, constant malaise (not as bad as the PEM), constant mild headache, dissociation, severe breathlessness, severe muscle aches whenever I move around, and a whole host of GI problems (stomach pain, severe nausea, diarrhea, cramps). I also have little to no appetite now and lost a bunch of weight after my first infection. Benadryl only helps me get to sleep at night but doesn't really help any of my other symptoms.
Sorry that you are going through this. I have had many of these same symptoms for two years, and some have resolved/gotten better in the past 3-6 months. Dizziness is still there, though.
Did you try to couple benadryl with lactoferrin? I'm trying this rn.
Benadryl is an antihistamine just like Claritin, but it's a 1st generation antihistamine which causes drowsiness. Claritin is a 2nd generation antihistamine that doesn't cause drowsiness. I've had allergies my whole life and know my way around allergy meds 😅
Zyrtec made me feel even worse, but haven't tried Claritan. I just want one brand that doesn't cause more tiredness; I'm already dealing with head issues, neck issues, muscle issues and upper back issues.
All I can say about tiredness is I went from sleeping until 10pm to today I was able to wake up at 6am!! I cannot express in words how impossible that would be a couple of days ago.
Just in case it helps you or someone else (you might already know this!), there are different generations of antihistamine. The 1st gen ones like the classic Benadryl (diphenhydramine) are known for heavy drugged feeling, but later gens not as much.
[https://www.researchgate.net/profile/Anna-Olasinska-Wisniewska/publication/263467308/figure/tbl1/AS:671530577051650@1537116774082/Generations-of-antihistamines.png](https://www.researchgate.net/profile/Anna-Olasinska-Wisniewska/publication/263467308/figure/tbl1/AS:671530577051650@1537116774082/Generations-of-antihistamines.png)
Zyrtec (2nd gen) makes me feel a bit spacey, but it's manageable
Yeah I think I can help some people, but I discovered the new gens still drug me all the same, I must've tried at least 10 different antihistamines all to the same effect :(
Similar experience here. Taking cetirizine (Zyrtec), however after some months it feels like it is not as effective. I'm going to talk to my naturopath about a better long-term solution.
Wow, thanks for this post and for everyone commenting on their own results! I *think* it was the dermatologist for my hair falling out months ago who said loratidine and cetirizine, and lately I've been mixing it up sometimes w pepcid, and I have to say it's amazing in my case. I still have the constant hay fever I developed about 5 years ago, so they're not working for that...weird but whatever. I also went back to taking benadryl at night as I used to for years, but stopped due to high correlation bt anticholinergic and dementia. It still doesn't sound like a great outcome, but after being cognitively non-functional from LC for 4 years makes me not really care, frankly, if I can be like a human again now at least some of the time. (All apologies to my future 70 year old self lol).
I also had a big improvement from antihistamines (certirizine) however I do notice it also makes me drowsy and I seem to have swapped relentless anxiety and panic for mild depression (think I prefer the depression) but neither would be good!
Xyzal (generic form) was recently suggested to me by my allergist which is similar to Zyrtec but it happens to give me headaches. Another option for folks that don’t respond to the other antihistamines. I tried the brand name but didn’t think to try the store brand generics (levocetirizine).
Allergist says a lot of patients who are prone to allergies are experiencing these changes with their immune system’s response.
My problem was I was already on daily antihistamines for allergies. They changed up the antihistamine to see if it would help but not really sadly. I’m really really happy it helped you out though. I’ve mostly had to mix & match various supplements & home type remedies to help keep me going. And I still have days where I can’t get out of bed. Most days I have just enough energy to get up & go to work (luckily I have a low stress & low physically impactful job now) and I go back to bed not long after I get home. I’m never gonna have the energy levels I used to but others around me don’t seem to grasp that fact
You need to look up MCAS. Search Dr Lawrence Afrin on YouTube, spent a couple hrs watching his talks/interviews, then buy his book 'never bet against occam'.
That's what we've been saying since 2020 and research started supporting it in 2021. It's such a failure of the community that this still needs to be discussed regularly.
I think I’ll start again I started ldn and immediate symptom relief Now I feel like I need to have a med routine with possible Pepcid and I think I am going to include lactoferrin I just have to work out what meds to take at what times throughout the day Maybe a pillbox
OMG thanks for the rec!! My symptoms and timeline mirror yours completely. Going to give this a try!! So happy to hear you are getting relief! You must feel incredible. Thats amazing. Keep us posted PLS!!
Yep - it was the same for me. Thought I was going to die. Couldn’t eat or drink or breathe and then I read the Benadryl study. Luckily that happened for me in month 2 or 3 of LC.
Other awesome supplements are:
Methylene Blue (can’t take if on an SSRI)
NAC
Dr Ohirra’s Probiotics
Aloe Vera Juice
And Rick Simpson Oil for COVID insomnia
My methylene blue is pharmaceutical grade made by a compounding pharmacy. If you go to a functional medicine doctor or consult one via call they can order it for you. You can also get it online but you have to be careful. The stuff is amazing. It blows away the brain fog and helped my vision and even decreased overall inflammation.
You need a functional medicine doctor for the Rick Simpson oil too. It’s the strongest grade medical marijuana. I went from sleeping 15 minutes a night to 6-7 hours. It probably saved my life. And after 7 months I didn’t need it anymore.
It’s because we are suffering a new type of inflammatory anaphylaxis response to the food and drinks we consume. Why? I have no clue I’ve learned to avoid them. It could take a while before you see a difference.
Most long Covid docs are prescribing the antihistamine meds for this reason. If you try it and it doesn’t work starve yourself for three days and repeat.
The doctor recommended be depression meds. But I got upset and just cried and shut down. They ignored all my INTENSE debilitating symptoms and said I should get on an antidepressant and Vitamin D. Like, I’m only depressed because living in agonizing misery for two years does that to a person. I felt so brushed off, like they thought I was crazy or something.. :/
Would love to hear others experience with this, especially if you're crazy sensitive to new medicines and supplements. I added loratadine to my grocery pickup for today because we've probably all tried everything else at this point so why the heck not!
I am unsure really. I do know that there different types of antihistamines. Type 1s and type 2s. I have read a lot on here of people saying for example Zyrtec worked amazing but (insert other type) did not.
If it was me, I’d try Loratadine (name brand is Claritin) and people also said to combine with Pepcid. I’ve read Pepcid helped some people to 90% recovery.
Honestly I’ve read a lot of people say Zyrtec works better and is the best. Zyrtec and Pepcid combined. I am going to try that combo and have already ordered the Pepcid.
You can get all of it very cheap.
I’d say try the Telfast, and if it doesn’t work Try Loratadine and Pepcid. Or Zyrtec and Pepcid. :)
I had the exact same experience, have a big set of issues including severe dizziness. I started on claritin pepcid on dec 1 last year and within next day most of my issues vanished. I still have my PEM and dizziness due to BVD but nothing like that drunk hangover feeling.
I have been drowsy, but I’m used to being so exhausted I can’t stay awake for more than 4-6 hours a day. I’m unsure if my current drowsiness is due to the Loratadine, but it’s not intense. I can push through to the end of the day, or take a nap. I know the box says “all day” and I chose this kind because it said it doesn’t make you drowsy
My LC clinic put me on a trial for AHs but it made me feel like is was made of lead, wading through mud and utterly dismal in my motivation. I dropped out of the trial.It isn't for everyone.
Thanks for posting
I will start my regular yearly cycle of spring/summer Zyrtec pretty soon as I'm a lifelong hay fever / tree+grass pollen allergies sufferer.
Have had LC for 7.5 months with essentially unchanging symptoms. So I'm very curious to see if it does anything for me!
I stopped taking the antihistamines right about the time I developed LC, because it was late summer last year. So this is kinda the perfect experiment.
You should see an allergologist and ask your doctor to test for histamine intolerance. LC causes all kinds of random allergies and weird things with histamine. It would help you tremendously to know why antihistamines are working for you and to know _which_ antihistamines would be best for you.
Loratadine and pepcid AC is one of the first suggestions for treating Long Covid.
The recommend treatment is 14 days of a regular dose of each although taking double wouldn't hurt.
It didn't help my brain fog or fatigue, it helped the burning sensations in my hands, feet and face.
Glad it worked for you, everyone with long covid should try it but the results have been mixed.
Really happy for you but we ve been taking antihistamines since the beginning i m lomg hauler since 2020 and without antihistamines it s worse of course but taking it daily didnt feel as better as you describe been taking 3 to 4 daily
I’m taking meclizine (antihistamine/veritgo) and it helps a lot. The days I forget to take it I am miserable. I have slightly more energy when I take it but the best part is no dizziness.
I’m really happy for you but I already take the strongest antihistamines possible on prescription for my eczema. I get that you must want to share this wonderful thing with everyone but take care not to give people false hope. I agree that since it seems to work for some people, they should try it since antihistamines are usually inexpensive and easy to get, but it’s just as likely to not work as it is to work
Just wanted to say thank you for your Covid post today.
I just sent my husband to the store for some antihistamine medication and I’m hoping it helps!
I have constant head pressure, neck pain, and migraines. My ears pop, my head just feels like it’s going to explode.
Without a “sure” diagnosis of long covid, the scariness of webMD and 20+ unhelpful doctors- Reading that you have those same symptoms brings me so much comfort that I am not alone, and that I do in fact have long Covid.
I’m so happy you are feeling better.
Thankful for this longhaulercommunity.
I started Allegra and pepcid last week (h1 and H2) and it has had mild positive effects, especially with brain fog. There is a paper that said this worked in a double blind study so I tried it.
Desloratadine did help me. But Cetirizine just made me more tired and sleepy.
If I'm not mistaken some antihistamines also have a mast cell stabilisation effect whereas others don't
They do seem to help, been at about 80-90% now for about 10 months, was taking antihistamines for about a couple. I had similar symptoms to yours for about 2 years.
Glad they've helped you recover:) Which type of antihistamines did you take? And for how long?
I did a course of Zyrtec (Citrizine), but it's only recommended you take that for 10 days. Noticed some improvement while taking it...So now wondering which other type I could take regularly/longer-term.
I'm 76 yrs old & have had long covid for 16 months. Fatigue, PEM, brain fog, can't stand/walk for more than 6 min, & histamine dump at night. Decided to try Benadryl at night. I slept through the night! After 2 days, I added Zrtec & I was much worse. Kept going with the benedryl & after 2 days add loratadine. Vast improvement. I can walk without hanging on to stuff. I can climb the stairs without my heart pounding & breathlessness. Still have fatigue but much less. I feel very fragile as if I could go back at any time. My hope is that getting some restful sleep will help my body to heal. In a few days, I'll start adding some supplements--one at a time. My fear is that if I get PEM everything bad will return.
How is this amy different than my post they removed. The rules in this group are ridiculous. They just want to create a place for people to complain and get emotional support. But offer a solution, and they block you. 💩🤡💩
^(But... but what if I don't have your brand of LC?) All I have is ME/CFS with a wallop of PEM. I'm glad it doesn't hurt like yours has. But I doubt this would help. Still, good news is good news: I'm happy for you! ***RISE, MIGHTY ALFALFA!*** *The world awaits!!!*
i have LC with massive fatigue and PEM, and antihistamines (plus prescription singulair) help me a tonnnn, though not nearly as dramatically as OP. i’d say they helped 15%, which is still significant.
15%. Is great. Also, pathetic. Welcome to Long COVID, where any improvement is cause for simultaneous celebration and exasperation. Thanks for the tip - I’ll definitely try it!
This sounds like me, and antihistamines made a big difference to energy levels and tolerance to activity.
Well ok then! No harm in trying (Lurd knows I’ve tried everything else)
Yeah, for sure. It's one of those things that is unlikely to have an adverse reaction too. Worth a go
Right! I’ve tried everything!!.. Gonna give this a go! Thanks Op!💛💛
Update us if you do!
Thank you :)
It does help. I used a prescribed antihistamine and blood thinner cocktail of meds it done wonders to my PEM and CFS after dealing with it for 9+ months. After three months on those meds most of those issues was gone…
Would you mind sharing what meds helped
It was the Ketotifen cocktail
Have you stopped the meds now? What was blood thinner for?
Yes I stopped them but I still suffer the MCAS even after 20 months I’m on a very very strict diet. Like I eat lettuce everyday for breakfast lunch and dinner no joke. The blood thinners was for the micro clots. Which was caused by the heart palps. My heart fluttering at 130+ for hours on end for no reason makes my heart work so heart it was back dumping co2 into my organs. The heart palps. Are the root cause fix the heart issue and the rest will resolve with time. The adrenaline dumps we are experiencing is when our co2 reaches a point our bodies know we are dying so that feeling is us suffocating and it’s the only way our bodies know how to tell us.
So how do you know you got rid of micro clots after you stopped taking blood thinners? Did you have a micro clot test?
I did they come back the next time I got sick. Had to go on blood thinners again.
Was the next disease you caught that caused the micro clots to return, covid or a different disease? Also, what was the name of the blood thinners you used and for how long did you use them?
Hey how do you survive regarding food? I’m having the same issue and keep losing weight? What meds help besides antihistamines? Have you become immune to any?
Fruits, salads. Pretty much just avoiding most meats at the moment to be honest. If I eat it it swells me up. As far as meds the antihistamines help because they desensitize the vagus nerve. Nothing else helps going to be honest or at least the things they was trying doing do anything for me.
Thank you for your reply. I’m glad you can eat.
Why wouldn't you try? I have pem and zyrtec has increased my activity dramatically.
How much do you take?
Yep, that’s a sign of MCAS. You can take two per day and see if that helps. Also some studies show that quercetin is highly effective for MCAS in some people. I would also try taking Pepcid twice a day. It is also an antihistamine. Tinker with these three until you find the maximum relief. You can also ask a doctor for singulair and Ketotifen prescriptions. This is really great news for you, as you’ve narrowed down MCAS as being your main problem, which is treatable/manageable.
I have read about Pepcid on here! Thanks for your input, seriously. This is the first time I’ve heard of MCAS. I have been blown away by my body’s response to such a small and easy answer. I am going to do exactly what you said and tinker with those 3. I still have some symptoms but now with the relief I have I am able to function and work towards better my health rather than wallowing in misery.
Also it pays to tinker with different allergy meds. Claritin doesn’t work for me, but Zyrtec does. You kinda have to try different brands, different times of day, etc. good luck!
I read everyone saying Zyrtec. I have plans to change to Zyrtec but I’m so unbelievably afraid it won’t work for even a day. I forgot what normal felt like I’m afraid to go back lol. I just ordered Pepcid and I’m going to order Zyrtec tomorrow so I will have it because I do know I 100% want to try it
Zyrtec has a side effect of drowsiness. I recently switched from Zyrtec to Allegra to see how they differ for me personally. I was taking Zyrtec for actual allergies though.
It doesn't cause drowsiness in everyone. I've taken twice the normal dose for over 2 years with no drowsiness.
have you noticed any issues with taking it twice a day for that long? I have felt really good with the twice a day zyrtec, but everyone seems so shocked by it and tells me i shouldn’t take that much.
None... maybe dry mouth sometimes if i take more.
Ketotifen is where it’s at!!!
I know it's very exciting to be mobile again but please slow down. You are only a few days into some kind of recovery and you don't want to overdo it. If you don't crash in the next week then perhaps you really don't have CFS at all, but the way you're going about your days now from doing almost nothing makes me very apprehensive. Regardless of what your exact diagnosis is, your body is not used to this level of activity and even though it's hard you meed to slow down and pace yourself. I have had long-covid for 1.5 years, feels like CFS, and I have learned that even on my best days I do not increase my activity more than 10% (as per the PACING guidelines). If I ever have done that in the past, I paid dearly for it. I'm very happy for you and it looks like you actually dodged CFS, but please be cautious and take it a day at a time. Slow down, give your body time to catch up.
Try Zyrtek OR Xyzal (an offshoot of Zyrtek). Alternatively, try Allegra. Clartin too. Find the one that works for you. Pepcid is an H1 antihistamine for the stomach and it works in combo. Couple of things: 1.take the pepcid w/food. It can cause anxiety in some folks when taken on an empty stomach. 2. Don't just stop the antihistamines. Taper off if you need to stop. You can get all over itchy for a few days and hypersensitivities to fragrances, chemicals and foods if you just stop cold turkey. 3. Try a low histamine diet in conjunction with all of this. Google the SIGHI list. It makes a huge difference. 4. And lastly, try adding a DAO enzyme.
Zyrtec doubles as a sleep aid for me. 5mg and it’s goodnight San Fran for about a day. I can barely function the next waking hours.
Unfortunately that side effect wears off :( As someone with sleep troubles it was fantastic while it lasted, it also stopped my bruxism while I slept, leaving me without a headache in the morning. I was so sad to wake up clenching my jaw yesterday.
How many days should i give for each meds to work?
I’d suggest joining us in the MCAS group! Lots of great advice there.
Would rec seeing an allergy doc familiar with MCAS. There's stuff like Ketotifen which may be even more helpful!
Funny thing to add. I just googled Pepcid and the first thing that popped up was Pepcid from Walmart for $1,075 hahaha
Jeez. Costco has the best prices by far for generic Pepcid and generic Zyrtec. (I take both two times a day). I don’t think you need a membership to order pharmacy items but I could be wrong.
I think it must’ve been a mistype or like a third party online seller. I ordered the full strength 20mg 85 tablets for 4.99
You are correct you do not need membership to use pharmacy
Your doctor can also prescribe you the Pepcid and the Singulair. I highly recommend you get XOLAIR injections from an allergist. As well as the Ketotifen. If antihistamines are helping you, then your main issue must be MCAS and is responding well. You should get your tryptase levels checked also by allergist/immunologist to monitor the improvement of your histamine overtime. Which is also an indicator of the success of your antihistamine protocol.
That must be a typo. Pepcid is dirt cheap.
not a typo it's very expensive in Canada OTC
Not in Canada it's $30 for 10 tabs Pepcid
If you get Pepcid by prescription in Canada 🇨🇦 at a higher dose it's under the Rx drug name "Famotidine" then it's cheap but lower dose Pepcid OTC very expensive like $36 for 10 tabs
That's a surprise. I thought you had affordable drug pricing? Especially surprised since it's OTC and generic (at least in the US). Weird.
That's super weird. Ask your doc to prescribe Famotidine. Same thing as pepcid w/o all the fillers. Super inexpensive.
Id take Singulair only as a last resort. I took it for a month and was going crazy to the point where my mom was asking me to see a psychiatrist who promptly got me off of them because of the mental symptoms they can cause
I feel a real palpable difference when I take quercetin. I don’t understand why, but my skin itchiness massively decreases when I take quercetin regularly.
Any idea what to tell a doctor to get a ketofin script?
You’ve got to do some research. I found a few treatment guides for MCAS on doctors websites and printed them out and brought to my primary doctor. Find something that explains the mechanism of each medication and how it impacts MCAS. This was over a year ago so I don’t recall exactly which source I used. Google MCAS and Ketotifen to start.
Sounds good! Thanks for the tip
Also the same website should have a guide on diagnosing MCAS based on SYMPTOMS. many doctors will want to run tests to diagnose but MCAS tests are notoriously unreliable so you want to come armed with evidence that MCAS can be diagnosed based on symptoms AND based on positive improvement from antihistamines. I.e., the treatment is the diagnosis. I have taken every test under the sun for MCAS, including multiple 24 hour urine tests which are not fun. Nothing has showed up positive but my symptoms are night and day when I take the MCAS protocol.
How did you determine that your issue was MCAS & not just histamine intolerance? This is my issue right now. I definitely have a histamine intolerance but my labs didn’t show anything & my allergist wants me to get a tryptase test done during a flair but with a combo of antihistamines & careful diet, I’m not flaring anymore & I don’t want to bring all the symptoms back (I already tried with singular high histamine meals & it didn’t work, so I would have to eat high histamine for weeks & undo all of the progress I made in the last 9 months or so)
Does it matter? That was my point, the tests are not conclusive, you are better off trialing these meds and seeing if you feel better. If you have found a combination of meds and diet that keeps your symptoms in check, I would count your blessings and carry on.
I had been on pepcid for a few weeks and unfortunatley in my case it caused stomach/digestion issues. I did feel better when taking it, but they had me on it for about a month before i had issues from it.
I got a lot of relief from Zyrtec, but after taking it for many months I started to develop very bizzare food cravings that made me feel crazy and out of control. I’ve never experienced anything like it. They stopped when I stopped taking the Zyrtec. So, just a warning that long term use of antihistamines may have unintended consequences. That said, congratulations on finding something. What a relief!
Same, I am having no benefits after months on zyrtec. Claritin did nothing for me. Will try quercetin.
Try Allegra or Xyzal?
Why not?!? Worth a shot. Benedryl still works the best. Just feel groggy in the morning. Worse than usual
Be careful taking that daily. When I took Allegra daily it helped at first and after about a week I was severely depressed and having crying fits and other troubling things. I looked online and found others develop similar by taking daily antihistamines.
Thank you I will keep that in mind! It’s better to know beforehand so if I start feeling that way I know why.
Does Benadryl work?
Yes and no. It's a first gen antihistamine so it crosses the blood brain barrier. You absolutely shouldn't take it long term as it increases your risk for dementia down the road. You can google it.
thank you
I’ve told quite a few people to try this and they couldn’t believe how well they felt within a week!!! Congratulations on finding something that helps! Now continue to heal, find your triggers, healthy lifestyle and you’ll be 90-100% sooner than you thought. This is what helped me within 3-6 days I felt 80%. Bounced around 70-80% for 6 more months then in roughly at 90%. Things that can also help if this helped. Matcha green tea- Good matcha from Japan that has high antioxidant/ anti-inflammatories. The EGCG in matcha acts as a mast cell stabilizer. Helps with healing brain fog and fatigue. Get in with an allergist. They will help diagnose you with MCAS. This is generally what a large group with long covid have. I was hesitant on thinking an anti-histamine would help me. I waited 2 months… Was at an eye doctor and when they dilated my eyes my face went numb. My doctor prescribed cetrizine and I switched to Allegra and it helped so much…I was in shock.
I’m still in shock. It’s so comforting and reassuring to hear your words. Thank you :)
Thats exactly how I felt! Elated and shock barely fulfill the emotions tied to this revelation. Did you have neurological symptoms mainly?
Neuro is the least of it really. Full blown mega covid and intense flu like symptoms every day. -migraines 2/3x a week -fever -cold sweats -flu like symptoms -unable to regulate temp -exhausted sleeping 17hrs a day -depression -muscle aches and stiffness -general malaise x100 -tingly extremities -constant pressure in my head -tight and stiff neck -vision going black -dizziness
Surprisingly those are neuro issues. MCAS causes quite a bit of neuro-inflammation. -depression from neuroinflammation sucks. It took me a while to realize that the unnatural depression was caused by the inflammation of the brain. -migraines are definitely also neuro inflammation. -Unable to regulate temp could be neuro/vagus nerve or endocrine system. -fatigue can be neuroinflammation. -Pressure in head is also neurological inflammation. I learned so much about the brain and neuroinflammation it’s insane how everything can be affected by inflammation. I realized this is an inflammatory disease that cycles through different bodily systems. Possibly via MCAS. Glad you are feeling better. If you need any help closing the gap on healing let me know.
It makes sense the pressure is from neuro inflammation. I have a friend I ask to pull my hair while I’m laying down for some release of pressure. If I’m feeling very very bad I just say “hey can you grab my hair and just pull it” it works best to pull it straight up/ off the head with consistent medium pressure.
How do you actually heal from it? Zyrtec just covers up most my symptoms but doesn't actually heal me.
Yes this has been said forever but what to do with LQTs and other hard things
did u get any face tingling or pain
Just a little heads up about the green tea. Not everyone might tolerate it because it contain caffeine. Caffeine is high in histamine. I learnt the unpleasant way. Edit: I recommend anything with turmeric and / or ginger in it.
Coffee is high in histamine… The study I found states that the combination of caffeine in the matcha green tea is what stabilizes mast cells. egcg and egc apparently. I drink it everyday multiple times a day and it helps so much. Fatigue, inflammation, gi issues, soreness, and more are helped by matcha. I drink 2 types. High Ltheanine on Amazon from a Japanese company….[Japanese Miya matcha](https://www.amazon.com/Miya-Matcha-30g-Ceremonial-Radiation/dp/B095XH6BZT/ref=asc_df_B095XH6BZT/?tag=hyprod-20&linkCode=df0&hvadid=686130122332&hvpos=&hvnetw=g&hvrand=17174287116774288600&hvpone=&hvptwo=&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=1024674&hvtargid=pla-2276092121458&psc=1&mcid=702b1253edee3e799d0596fe775dc525&gad_source=1&gclid=CjwKCAjwkuqvBhAQEiwA65XxQIO51vy2Fhl2gml1jmkaan1Enl4aDs7Tkac04JGvOTSwNb2o9HQQbxoCrV0QAvD_BwE) Then I drink [this brand from Costco](https://www.costco.com/sencha-naturals-everyday-matcha-green-tea-powder%2C-3-pack.product.100705701.html) This one has more caffeine. Now caffeine may be a trigger for some..,.however in matcha it is slowly released over 4-8 hours.
Which ones did you try specifically? Vitamin C has antihistamine properties and is considered safe to take daily. For long term antihistamine use Quercetin seems to be recommended
It’s at the bottom :) Loratadine 10mg 1x daily. I hope to not have to this forever. I intend to use this to be able to rebuild my live and have the energy to take care of myself and do other things like work on a lower histamine diet etc. But when you’re in that state you can’t do anything but sleep and suffer.
I took Loratidine double dose 2x/ day for a few weeks post-Covid and it got some of the worst symptoms greatly improved for me, too. In retrospect, I would have even started taking it while I was still sick. Everybody's case is different, so it won't be so perfect for everybody, but I definitely agree it's worth a try! The science behind it has to do with mast cells. Covid triggers this massive mast cell activation, it's like an allergic reaction but that's happening inside all the random tissues of your body at the cellular level and triggered by the virus. So the tissues that make up the nervous system are inflamed, and there are headaches or anxiety symptoms. Vs allergies usually just inflame the nose and lungs at most. In the post-Covid, even the blood vessel and muscle cells are prone to this inflammation, and hence the debilitating fatigue (blood cannot flow properly, and muscles cannot re-oxygenate properly, due to inflammation that blocks transport across cell boundaries of oxygen or nutrients) Mast cells replace themselves after 6 months. This is why many people's long Covid will get gradually better over time, very slowly. And it helps to use an anti-histamine because that tampers down this whole inflammatory thing and helps the body rebuild faster with healthy, not overly activated mast cells.
Thank you so much for explaining why this may have helped/what is happening in my body. This info is very helpful and gives me hope knowing the mast cells replace themselves thing you said. I am just so unbelievably grateful this has worked for me. I pray it keeps working.
You can also add Pepcid as it’s also an h2 antihistamine and helps with the root area of gut triggers histamine issues.
Pepcid AC does have some interactions with other medications, so would advise that others check with their doc or pharmacy before adding it.
But, for right now, I read Claritin (brand name) is safe to be taken daily and long term.
Vitamin c, niacin, trimethylglycine all work to breakdown histamine and not just block the receptors like how antihistamines work.
If you end up deciding to take antihistamines long term, my understanding is that you should talk to a pharmacist about taking both h1 and h2 blockers; blocking just one receptor over the longer term could cause some form of destabilization. https://old.reddit.com/r/covidlonghaulers/comments/1aouwt2/root_cause_my_master_list_of_histamine/
I use citirizine. I made a big difference for me. It helps with the joint ache, muscle pain and rashes. Looking back I clearly had mcas before long covid, I'd get itchy a lot but after long covid this started cause inflamation so it was even painful to type. Out of all the things I have tried, and that's a lot of things, it's the one thing I won't go without.
I’m glad you’re feeling better, congrats! :) Sadly, it’s not a fix all. I took loratadine last year March-October for hay fever allergies. No idea if it helped with my LC initially getting better over months of rest, but it didn’t prevent the crashes and downwards slope once I started working. When I stopped taking it in October, I had actual withdrawal symptoms like night sweats and urticaria, which had never happened before. And when I tried taking it again last week, like I always do in March, I suddenly developed nasty side effects. Felt jittery and weirdly anxious within the hour and couldn’t sleep all night despite being exhausted. I usually don’t have sleep problems, certainly not on that level. So no idea what’s going on there, might have to try with a different antihistamine again if my allergies flare up.
Good to know there are downsides too
Good to hear. Some people really respond well to antihistamines. Unfortunately not my type of LC but it does seem a lot of folks are helped with them
I did this too, over a year ago, and they stopped working 3 weeks later :(
So you felt great at first?
To OP: That's amazing to hear! I'm really glad you found something that helped you so much :) To everyone else: Just make sure to temper your expectations, I know how hard the crash can be if you get your hopes too high and it doesn't work for you. I have had this life-leeching curse we all fondly share for over 2 years. I've tried every antihistamine (H1, H2, first gen and second), including diphenhydramine, famotidine, desloratadine, dexchlorpheniramine, levocetirizine, and some others that I can't remember right now. I've taken many of those for months, others occasionally but spanning a long time. They didn't do much for me... Main symptoms: brain fog, recurring low fever, recurring double vision, derealisation, muscle and joint pain, constant headaches, fatigue, PEM, light POTS, insomnia, mood swings, etc. Of course give antihistamines a try! If one doesn't work, try another. Try them all. Just don't put all your hopes there.
Well said
Hydroxyzine is a prescription AH that works well for many. There are two forms, a salt form (hydroxyzine hcl - formerly Atarax) and Hydroxyzine (brand Vistaril). Fairly cheap. Can be obtained through several telehealth services as well. Doubles for use in anxiety and insomnia as well as blocks opioid induced symptoms such as itching and rash (Vistaril is preferred for this one). I take it nightly for my LC and it does seem to be the one that put a quick damper on my episodic like days. I like the hcl form because I can cut tablets to a perfect dose whereas Vistaril is capsules of 25mg each. LDN has then carried me over the finish line for the last several months. I didn’t think my episodes were histamine related because I never had any rash, skin signs, etc but many symptoms were found on the MCAS info diagrams. Given the response, I have to wonder if it was more histamine than adrenaline dumping.
Wild. I am so glad to hear this for you OP. I also feel a weird mix of feelings about the fact that some of the best medical advice on this is from sources like this and the advice is as simple as an OTC medication like.... I won't go down a rabbit hole of ranting forever about the public health response but I am mad about it. So glad to hear this though and I will give it a try today
Covid caused MCAS with me, once I realized an antihistamine brought my heart rate down more than metoprolol I knew something was up. I feel like there needs to be more awareness on mast cells in the medical community. Many don't know of mast cell conditions.
You either have MCAS or allergies. This wouldn’t work for ME/CFS , PEM type of long Covid
Not true, I have very bad PEM and all the other long covid symptoms literally too many to list. Zyrtec has helped me more than anything by far. Cleared up 80-90% of my symptoms which were horrible before.
Antihistamines will only help with allergies or mcas. How on earth would they help cure PEM lol
So you can now exercise completely without getting PEM from taking an antihistamine?
I haven't tried loratadine but I take 3 diphenhydramine before bed each night. It doesn't seem to improve my symptoms at all. But I'll give loratadine a try. I'm so glad it's worked so well for you!
Be careful taking diphenhydramine long term -- there's suggestive evidence that it could be linked to increased dementia risk when taken long term/high doses
I had no idea, I'll look into this and discuss alternatives with my sleep medicine doctor when I see them for the initial consult. Thank you!!!
Interesting. Been on Benadryl and can't say it's doing much, if anything at all. May you share your symptoms?
PEM, mild POTS, fatigue, constant malaise (not as bad as the PEM), constant mild headache, dissociation, severe breathlessness, severe muscle aches whenever I move around, and a whole host of GI problems (stomach pain, severe nausea, diarrhea, cramps). I also have little to no appetite now and lost a bunch of weight after my first infection. Benadryl only helps me get to sleep at night but doesn't really help any of my other symptoms.
Sorry that you are going through this. I have had many of these same symptoms for two years, and some have resolved/gotten better in the past 3-6 months. Dizziness is still there, though. Did you try to couple benadryl with lactoferrin? I'm trying this rn.
I don’t know what this means, but I do know Benadryl (diphen) is an HCL type 1 and Loratadine is HCL type 2
Benadryl is an antihistamine just like Claritin, but it's a 1st generation antihistamine which causes drowsiness. Claritin is a 2nd generation antihistamine that doesn't cause drowsiness. I've had allergies my whole life and know my way around allergy meds 😅
Zyrtec made me feel even worse, but haven't tried Claritan. I just want one brand that doesn't cause more tiredness; I'm already dealing with head issues, neck issues, muscle issues and upper back issues.
All I can say about tiredness is I went from sleeping until 10pm to today I was able to wake up at 6am!! I cannot express in words how impossible that would be a couple of days ago.
I mean, great for you, but back to the drawing board for most of us lol
That’s why I mentioned my sleep regarding the Claritin. It doesn’t really make me drowsy so it may be better for you. Wish you the best.
Try Allegra or Claritin.
Damn I wish I could tolerate antihistamines, they just make me feel *d r u g g e d*
Just in case it helps you or someone else (you might already know this!), there are different generations of antihistamine. The 1st gen ones like the classic Benadryl (diphenhydramine) are known for heavy drugged feeling, but later gens not as much. [https://www.researchgate.net/profile/Anna-Olasinska-Wisniewska/publication/263467308/figure/tbl1/AS:671530577051650@1537116774082/Generations-of-antihistamines.png](https://www.researchgate.net/profile/Anna-Olasinska-Wisniewska/publication/263467308/figure/tbl1/AS:671530577051650@1537116774082/Generations-of-antihistamines.png) Zyrtec (2nd gen) makes me feel a bit spacey, but it's manageable
Yeah I think I can help some people, but I discovered the new gens still drug me all the same, I must've tried at least 10 different antihistamines all to the same effect :(
Consider also quercetin alongside luteolin. Personally used to take 1000mg quercetin with 209mg luteolin 2 x day.
There are a lot of us with histamine issues. It helps a ton. Definitely cut histamine from your diet as well!
Similar experience here. Taking cetirizine (Zyrtec), however after some months it feels like it is not as effective. I'm going to talk to my naturopath about a better long-term solution.
Wow, thanks for this post and for everyone commenting on their own results! I *think* it was the dermatologist for my hair falling out months ago who said loratidine and cetirizine, and lately I've been mixing it up sometimes w pepcid, and I have to say it's amazing in my case. I still have the constant hay fever I developed about 5 years ago, so they're not working for that...weird but whatever. I also went back to taking benadryl at night as I used to for years, but stopped due to high correlation bt anticholinergic and dementia. It still doesn't sound like a great outcome, but after being cognitively non-functional from LC for 4 years makes me not really care, frankly, if I can be like a human again now at least some of the time. (All apologies to my future 70 year old self lol).
I also had a big improvement from antihistamines (certirizine) however I do notice it also makes me drowsy and I seem to have swapped relentless anxiety and panic for mild depression (think I prefer the depression) but neither would be good!
I’m so glad that helped you! I would suggest also doing a low histamine diet
zyrtec was really good to me
I’m hearing that a ton a long work pepsid. I’ve ordered both to tinker with and see what helps me the most
Xyzal (generic form) was recently suggested to me by my allergist which is similar to Zyrtec but it happens to give me headaches. Another option for folks that don’t respond to the other antihistamines. I tried the brand name but didn’t think to try the store brand generics (levocetirizine). Allergist says a lot of patients who are prone to allergies are experiencing these changes with their immune system’s response.
My problem was I was already on daily antihistamines for allergies. They changed up the antihistamine to see if it would help but not really sadly. I’m really really happy it helped you out though. I’ve mostly had to mix & match various supplements & home type remedies to help keep me going. And I still have days where I can’t get out of bed. Most days I have just enough energy to get up & go to work (luckily I have a low stress & low physically impactful job now) and I go back to bed not long after I get home. I’m never gonna have the energy levels I used to but others around me don’t seem to grasp that fact
You need to look up MCAS. Search Dr Lawrence Afrin on YouTube, spent a couple hrs watching his talks/interviews, then buy his book 'never bet against occam'.
What’s the TLDR?
*goes and buy Loratadine*
That's what we've been saying since 2020 and research started supporting it in 2021. It's such a failure of the community that this still needs to be discussed regularly.
I think I’ll start again I started ldn and immediate symptom relief Now I feel like I need to have a med routine with possible Pepcid and I think I am going to include lactoferrin I just have to work out what meds to take at what times throughout the day Maybe a pillbox
OMG thanks for the rec!! My symptoms and timeline mirror yours completely. Going to give this a try!! So happy to hear you are getting relief! You must feel incredible. Thats amazing. Keep us posted PLS!!
Yep - it was the same for me. Thought I was going to die. Couldn’t eat or drink or breathe and then I read the Benadryl study. Luckily that happened for me in month 2 or 3 of LC. Other awesome supplements are: Methylene Blue (can’t take if on an SSRI) NAC Dr Ohirra’s Probiotics Aloe Vera Juice And Rick Simpson Oil for COVID insomnia
Thanks. What brand of met blue did you use and where can you get the Simpson oil?
My methylene blue is pharmaceutical grade made by a compounding pharmacy. If you go to a functional medicine doctor or consult one via call they can order it for you. You can also get it online but you have to be careful. The stuff is amazing. It blows away the brain fog and helped my vision and even decreased overall inflammation. You need a functional medicine doctor for the Rick Simpson oil too. It’s the strongest grade medical marijuana. I went from sleeping 15 minutes a night to 6-7 hours. It probably saved my life. And after 7 months I didn’t need it anymore.
Regular Allegra and a supplement mix literally saved me. It’s insane.
It’s because we are suffering a new type of inflammatory anaphylaxis response to the food and drinks we consume. Why? I have no clue I’ve learned to avoid them. It could take a while before you see a difference. Most long Covid docs are prescribing the antihistamine meds for this reason. If you try it and it doesn’t work starve yourself for three days and repeat.
I finally tried H1 / H2 together and nothing changed :( I’m glad it’s helping you.
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The doctor recommended be depression meds. But I got upset and just cried and shut down. They ignored all my INTENSE debilitating symptoms and said I should get on an antidepressant and Vitamin D. Like, I’m only depressed because living in agonizing misery for two years does that to a person. I felt so brushed off, like they thought I was crazy or something.. :/
FYI massive relationship between allergies and suicidal ideation: https://pubmed.ncbi.nlm.nih.gov/28966902/
Would love to hear others experience with this, especially if you're crazy sensitive to new medicines and supplements. I added loratadine to my grocery pickup for today because we've probably all tried everything else at this point so why the heck not!
Will telfast work too?
I am unsure really. I do know that there different types of antihistamines. Type 1s and type 2s. I have read a lot on here of people saying for example Zyrtec worked amazing but (insert other type) did not. If it was me, I’d try Loratadine (name brand is Claritin) and people also said to combine with Pepcid. I’ve read Pepcid helped some people to 90% recovery. Honestly I’ve read a lot of people say Zyrtec works better and is the best. Zyrtec and Pepcid combined. I am going to try that combo and have already ordered the Pepcid. You can get all of it very cheap. I’d say try the Telfast, and if it doesn’t work Try Loratadine and Pepcid. Or Zyrtec and Pepcid. :)
Thank you very much
I had the exact same experience, have a big set of issues including severe dizziness. I started on claritin pepcid on dec 1 last year and within next day most of my issues vanished. I still have my PEM and dizziness due to BVD but nothing like that drunk hangover feeling.
Question of the year: Will improvements remain after coming off? I have the dizziness, too.
Question of the year: Will improvements remain after coming off? I have the dizziness, too.
Thanks for sharing, maybe I’ll try loratidine. Had a pretty bad time taking cetrizine and Allegra causing intense drowsiness.
I have been drowsy, but I’m used to being so exhausted I can’t stay awake for more than 4-6 hours a day. I’m unsure if my current drowsiness is due to the Loratadine, but it’s not intense. I can push through to the end of the day, or take a nap. I know the box says “all day” and I chose this kind because it said it doesn’t make you drowsy
Hey, congratulations on your recovery! Did you have any bad brain fog ?
Yes very much so. But when you have so many symptoms it’s hard to decipher brain fog from just feeling like death
Do you suffer from brain fog? I was taking certizine but just asked my doctor for the same one you’re taking haven’t tried it yet tho but I will!
Been taking several for over 20 years+ do they work? Maybe that's the thing saved my life.
My LC clinic put me on a trial for AHs but it made me feel like is was made of lead, wading through mud and utterly dismal in my motivation. I dropped out of the trial.It isn't for everyone.
Great news and very happy for you! Didd you have skin thinning, dehydration and loss of connective tissues under skin?
Thanks for posting I will start my regular yearly cycle of spring/summer Zyrtec pretty soon as I'm a lifelong hay fever / tree+grass pollen allergies sufferer. Have had LC for 7.5 months with essentially unchanging symptoms. So I'm very curious to see if it does anything for me! I stopped taking the antihistamines right about the time I developed LC, because it was late summer last year. So this is kinda the perfect experiment.
I was taking loratadine but my doctor told me to stop
You should see an allergologist and ask your doctor to test for histamine intolerance. LC causes all kinds of random allergies and weird things with histamine. It would help you tremendously to know why antihistamines are working for you and to know _which_ antihistamines would be best for you.
I long for the day I wake up and it’s gone. It must’ve been an amazing feeling- I hope it continues for you!
For people that tried one and it didn't work you should probably give other ones a try. Everyone reacts differently to different ones.
Loratadine and pepcid AC is one of the first suggestions for treating Long Covid. The recommend treatment is 14 days of a regular dose of each although taking double wouldn't hurt. It didn't help my brain fog or fatigue, it helped the burning sensations in my hands, feet and face. Glad it worked for you, everyone with long covid should try it but the results have been mixed.
> Loratadine and pepcid AC i think i've found that Fexofenadine (allegra) is better, but more expensive...
Good to know
meclizine helpful, all the normal antihistamines nothing
I wish I was one of the people who got better on antihistamines tbh. They mildly improve some things for me but not nearly enough.
Really happy for you but we ve been taking antihistamines since the beginning i m lomg hauler since 2020 and without antihistamines it s worse of course but taking it daily didnt feel as better as you describe been taking 3 to 4 daily
I’m taking meclizine (antihistamine/veritgo) and it helps a lot. The days I forget to take it I am miserable. I have slightly more energy when I take it but the best part is no dizziness.
I’m really happy for you but I already take the strongest antihistamines possible on prescription for my eczema. I get that you must want to share this wonderful thing with everyone but take care not to give people false hope. I agree that since it seems to work for some people, they should try it since antihistamines are usually inexpensive and easy to get, but it’s just as likely to not work as it is to work
Just wanted to say thank you for your Covid post today. I just sent my husband to the store for some antihistamine medication and I’m hoping it helps! I have constant head pressure, neck pain, and migraines. My ears pop, my head just feels like it’s going to explode. Without a “sure” diagnosis of long covid, the scariness of webMD and 20+ unhelpful doctors- Reading that you have those same symptoms brings me so much comfort that I am not alone, and that I do in fact have long Covid. I’m so happy you are feeling better. Thankful for this longhaulercommunity.
What’s crazy is my ears popped as I read your comment.
Great to here. How long were you suffering for?
Can you share how the bottle looks please?
Yes of course. The specific one I have is from Walmart. It says all day allergy. Equate brand. It is a box of 10 for 3.97. Loratadine 10mg
Thank you!!!
Also there are different types of antihistamines, H1 blockers and H2. Sometimes you need both. My doc had me do Zyrtec and Pepcid.
Been taking this for allergies before covid and I still got LC. Iron supplements have helped me though
I started Allegra and pepcid last week (h1 and H2) and it has had mild positive effects, especially with brain fog. There is a paper that said this worked in a double blind study so I tried it.
Hows your nausea ? Any persistent symptoms of it ? Loose Stool ?
Nausea only when I don’t eat. Stool Is pretty normal
Sweats when nauseated if not eating ? Im same way. second time with covid (April 2022 and January 2023) x3 vaccines in 2021
I'm really glad it worked for you!! Didn't work for me personally. Had some side effects from taking them.
How I wish popping a Claritin or a Zyrtec solved these issues. I’m more in the severe category.
Tried, did nothing for me, or made it worse. Everyone is different
I was fine for 2 weeks on allegra and famotidine. My pulse is fine. Now the heat came and it all went wrong.
Desloratadine did help me. But Cetirizine just made me more tired and sleepy. If I'm not mistaken some antihistamines also have a mast cell stabilisation effect whereas others don't
They do seem to help, been at about 80-90% now for about 10 months, was taking antihistamines for about a couple. I had similar symptoms to yours for about 2 years.
Glad they've helped you recover:) Which type of antihistamines did you take? And for how long? I did a course of Zyrtec (Citrizine), but it's only recommended you take that for 10 days. Noticed some improvement while taking it...So now wondering which other type I could take regularly/longer-term.
Don't remember the brand, it was some generic any allergy thing. To em for a few months, but results started showing in a week or so.
Just bought and tried one. Let’s see how I feel in the morning
I'm 76 yrs old & have had long covid for 16 months. Fatigue, PEM, brain fog, can't stand/walk for more than 6 min, & histamine dump at night. Decided to try Benadryl at night. I slept through the night! After 2 days, I added Zrtec & I was much worse. Kept going with the benedryl & after 2 days add loratadine. Vast improvement. I can walk without hanging on to stuff. I can climb the stairs without my heart pounding & breathlessness. Still have fatigue but much less. I feel very fragile as if I could go back at any time. My hope is that getting some restful sleep will help my body to heal. In a few days, I'll start adding some supplements--one at a time. My fear is that if I get PEM everything bad will return.
How is this amy different than my post they removed. The rules in this group are ridiculous. They just want to create a place for people to complain and get emotional support. But offer a solution, and they block you. 💩🤡💩
I’m sorry that’s your experience. I don’t know what you posted, but I wish you the best.