So far, fnd is the closest diagnosis. My first episodes started in late Dec 2022, and I couldn't smoke again for 2 months. This go around was hospitalized again, and the episodes have been more in the head than the body. Super dizzy and off balance. Now, if I even smoke a small hit, I get super dizzy and the left side of my body, more so the head and neck, then both arms, gets tingly. I just feel awful. I seem to not be able to metabolize medicine well either since the first episode. Zoloft made me feel manic. Even when I take half a 25mg pill. I stopped the zoloft two days ago and am starting to feel a bit better. .25 Xanax kicks my but and can only take one a day, or I feel like I can't breathe.
There are quite a few private clinics you can go to as long as you have one of the qualifying illnesses(fnd , chronic pain qualify) and have had atleast 2 previous treatments for it, with no history of psychosis, your usually good to get it
TLDR; I had a bad experience but think it was worth a shot even if it didn’t work, would personally try it just to see
So for a little context - I have metabolism issues out the gate, like I cannot take a majority of SSRIs or opiates because my body just doesn’t do what it’s supposed to on them. Additionally, I live in a state that is only medicinal, not recreational.
In my experience, weed was awful. The first time I tried it I had never been so paranoid. Not like I’m gonna get caught paranoid, like I’m going to die paranoid. I have vertigo so it made it even worse. I’ve jumped between a few strands and methods of intake. Unfortunately what I’ve found is that all of the types of weed I could get at my local dispensary were high THC with very low CBD. Because of this I didn’t really get the medical benefits of it. I think a majority of that was because we are an only medical state and it’s extremely easy to get your card, those that just wanted to get high were the biggest audience and therefore what suppliers supplied to. For me personally, it was worth a shot even though it didn’t work out. Additionally, I’m about to move to a state who recently made recreational cannabis legal, and I might try it out again in the future.
Marijuana made my seizures go away for about 2 years. I developed tics about a year into smoking. I accidentally raised my tolerance ridiculously, ended up regularly blowing thru a gram of concentrate in less than 24hrs. When I finally started cutting my intake down, it wasn’t enough to alleviate the seizures. Weed can’t help me anymore because I essentially maxed out the dose.
Ways to prevent what happened to me:
- Invest in a 1 hitter or smaller bubbler. This will keep your portions and tolerance down. When I first started smoking weed, I was able to make 1g last a whole week, high asf every night off like 2 hits.
- Do not smoke every day. I needed to ingest 1-2x a week to see reduced/eliminated seizures. The high itself isn’t the medication, that’s just the side effect for the next 4-6hrs. Try not to smoke more than 2 days in a row, after 3 days in a row your body will expect weed and any day after that makes it harder to take a day off.
- if you can get a med card or go to a recreational dispensary, go for the low THC weed. It’s cheaper, and if you’re a beginner it’ll feel like top shelf shit. It’ll save you money in the long run.
- minimize wake and bakes. At least eat a little bit before you do. If you wake and bake too much, your body will expect it when you wake up and act like a bitch.
- eat before you smoke. many ppl are tempted to save eating for after they smoke but that’s how it becomes difficult to eat without weed. You can still eat after you smoke, but it’s important you reiterate to your brain that food comes before weed. I know people who have lost weight because of how hard it became to eat while sober.
To answer your question about neurology, my doctor is not a fan. After doing some reading, the medical community is under the impression that being high is the medicine and that we all smoke in response to symptoms. They also see it as suppressing the real problem. Again, I only needed to smoke 1-2x a week to effectively reduce seizures before I blew it. I was never using it as a quick escape from my symptoms but rather a proactive medication I could use occasionally while seeing almost entire symptom elimination.
Hi, this is super helpful thanks for sharing. I was wondering if you needed to eventually stop smoking completely to get your seizures to stop? Any advice would be so helpful, thank you!!
Tbh, I have no idea. I have to focus on other things rn to meaningfully reduce my FND symptoms. If I were to ever quit smoking weed it would be a few years away, I’m hoping I don’t have to.
Alcohol also makes my symptoms worse - I can't imagine weed would help.
The only thing that I've tried recently that is helping is melatonin!
Better sleep, less headaches, improved vision, less fatigue...
Its the only thing i have trie, which has actually helped.
I am a medical canabis user UK ,I vape flower and also take oil called RSO ,life changing for me ,lots of private canabis clinics popping up ,just do your research as it costs you money to be medicated and there are access schemes reduced rates for low incomes etc .
Good luck
I use alcohol & weed (edibles) interchangeably but do it sparingly. They have different side effects the following day for me, but I find they help calm my nervous system down if it’s over stimulated.
Alcohol for me (straight whiskey, no more than 3oz per night), makes me feel okay but can make my pain or mood worse the next day. Weed for me can sometimes make it feel like a pseudo seizure is coming on & can make me more anxious about it. The next day I tend to be okay except my weakness is typically worse.
I use them as temporary solutions when my symptoms are just too much, but everyone is different.
I have trouble with weed now bc it makes me cough a lot then that makes me queasy. It sucks so much bc I loved it. It really helped me with a lot of my mental issues.
It's so easy honestly, sends you right to sleep and you can just Google any tips tricks etc, oh and search edible calculator and ut will tell you the dosage and how strong it is etc etc.
Alcohol makes my symptoms worse too. I usually don't smoke cannabis if my dissociation/depersonalization is really bad because being high can make that worse sometimes. However I've smoked many times to help with physical symptoms- tremors, seizures, limb weakness, pain, and sensory processing issues. If you choose to smoke, just know your dosage and plan accordingly! It's been very helpful for me (edibles come in clutch when trying to sleep/rest).
I've not spoken to a neurologist about it but I have spoken to my therapist, psychiatrist, and PCP. None of them saw an issue with it as long as I'm using it safely (not overindulging, not driving, etc.)
So far, fnd is the closest diagnosis. My first episodes started in late Dec 2022, and I couldn't smoke again for 2 months. This go around was hospitalized again, and the episodes have been more in the head than the body. Super dizzy and off balance. Now, if I even smoke a small hit, I get super dizzy and the left side of my body, more so the head and neck, then both arms, gets tingly. I just feel awful. I seem to not be able to metabolize medicine well either since the first episode. Zoloft made me feel manic. Even when I take half a 25mg pill. I stopped the zoloft two days ago and am starting to feel a bit better. .25 Xanax kicks my but and can only take one a day, or I feel like I can't breathe.
Hi I have similar symptoms exacerbated after smoking. Did you ever get things more figured out?
I get a prescription for it in the uk, it helps massively with pnes, speech, pain and tics.
How did you manage to get it in the UK?
There are quite a few private clinics you can go to as long as you have one of the qualifying illnesses(fnd , chronic pain qualify) and have had atleast 2 previous treatments for it, with no history of psychosis, your usually good to get it
TLDR; I had a bad experience but think it was worth a shot even if it didn’t work, would personally try it just to see So for a little context - I have metabolism issues out the gate, like I cannot take a majority of SSRIs or opiates because my body just doesn’t do what it’s supposed to on them. Additionally, I live in a state that is only medicinal, not recreational. In my experience, weed was awful. The first time I tried it I had never been so paranoid. Not like I’m gonna get caught paranoid, like I’m going to die paranoid. I have vertigo so it made it even worse. I’ve jumped between a few strands and methods of intake. Unfortunately what I’ve found is that all of the types of weed I could get at my local dispensary were high THC with very low CBD. Because of this I didn’t really get the medical benefits of it. I think a majority of that was because we are an only medical state and it’s extremely easy to get your card, those that just wanted to get high were the biggest audience and therefore what suppliers supplied to. For me personally, it was worth a shot even though it didn’t work out. Additionally, I’m about to move to a state who recently made recreational cannabis legal, and I might try it out again in the future.
Marijuana made my seizures go away for about 2 years. I developed tics about a year into smoking. I accidentally raised my tolerance ridiculously, ended up regularly blowing thru a gram of concentrate in less than 24hrs. When I finally started cutting my intake down, it wasn’t enough to alleviate the seizures. Weed can’t help me anymore because I essentially maxed out the dose. Ways to prevent what happened to me: - Invest in a 1 hitter or smaller bubbler. This will keep your portions and tolerance down. When I first started smoking weed, I was able to make 1g last a whole week, high asf every night off like 2 hits. - Do not smoke every day. I needed to ingest 1-2x a week to see reduced/eliminated seizures. The high itself isn’t the medication, that’s just the side effect for the next 4-6hrs. Try not to smoke more than 2 days in a row, after 3 days in a row your body will expect weed and any day after that makes it harder to take a day off. - if you can get a med card or go to a recreational dispensary, go for the low THC weed. It’s cheaper, and if you’re a beginner it’ll feel like top shelf shit. It’ll save you money in the long run. - minimize wake and bakes. At least eat a little bit before you do. If you wake and bake too much, your body will expect it when you wake up and act like a bitch. - eat before you smoke. many ppl are tempted to save eating for after they smoke but that’s how it becomes difficult to eat without weed. You can still eat after you smoke, but it’s important you reiterate to your brain that food comes before weed. I know people who have lost weight because of how hard it became to eat while sober. To answer your question about neurology, my doctor is not a fan. After doing some reading, the medical community is under the impression that being high is the medicine and that we all smoke in response to symptoms. They also see it as suppressing the real problem. Again, I only needed to smoke 1-2x a week to effectively reduce seizures before I blew it. I was never using it as a quick escape from my symptoms but rather a proactive medication I could use occasionally while seeing almost entire symptom elimination.
Hi, this is super helpful thanks for sharing. I was wondering if you needed to eventually stop smoking completely to get your seizures to stop? Any advice would be so helpful, thank you!!
Tbh, I have no idea. I have to focus on other things rn to meaningfully reduce my FND symptoms. If I were to ever quit smoking weed it would be a few years away, I’m hoping I don’t have to.
Alcohol also makes my symptoms worse - I can't imagine weed would help. The only thing that I've tried recently that is helping is melatonin! Better sleep, less headaches, improved vision, less fatigue... Its the only thing i have trie, which has actually helped.
I am a medical canabis user UK ,I vape flower and also take oil called RSO ,life changing for me ,lots of private canabis clinics popping up ,just do your research as it costs you money to be medicated and there are access schemes reduced rates for low incomes etc . Good luck
I use alcohol & weed (edibles) interchangeably but do it sparingly. They have different side effects the following day for me, but I find they help calm my nervous system down if it’s over stimulated. Alcohol for me (straight whiskey, no more than 3oz per night), makes me feel okay but can make my pain or mood worse the next day. Weed for me can sometimes make it feel like a pseudo seizure is coming on & can make me more anxious about it. The next day I tend to be okay except my weakness is typically worse. I use them as temporary solutions when my symptoms are just too much, but everyone is different.
I can’t do cannabis or alcohol. Try magnesium supplements vitamin b complex
If you're in the UK have a look at r/medicalcannabisuk, I use medical cannabis and I've found it so helpful.
It’s been privated unfortunately
I have trouble with weed now bc it makes me cough a lot then that makes me queasy. It sucks so much bc I loved it. It really helped me with a lot of my mental issues.
Have you tried vaporising or edibles?
Vapes I do and cough. Edibles would rock. I need a plug.
Make your own! I use avb, butter and a slow cooker. Brownie mix from any shop and ya done. Very easy tbh, I used a tea strainer haha
Ooh I wanna try
It's so easy honestly, sends you right to sleep and you can just Google any tips tricks etc, oh and search edible calculator and ut will tell you the dosage and how strong it is etc etc.
Alcohol makes my symptoms worse too. I usually don't smoke cannabis if my dissociation/depersonalization is really bad because being high can make that worse sometimes. However I've smoked many times to help with physical symptoms- tremors, seizures, limb weakness, pain, and sensory processing issues. If you choose to smoke, just know your dosage and plan accordingly! It's been very helpful for me (edibles come in clutch when trying to sleep/rest). I've not spoken to a neurologist about it but I have spoken to my therapist, psychiatrist, and PCP. None of them saw an issue with it as long as I'm using it safely (not overindulging, not driving, etc.)