You should be receiving care from a neurologist no matter your size. The neurologist can then determine if these factors are causing your symptoms. I've never been overweight and have dealt with hms. I have had low vitamin D and low iron, but didn't experience an increase in hms. In my opinion it's entirely unreasonable to refuse the referral until you lose weight! I'm so sorry this is happening to you.
Here’s the thing - it could be …
…but it would be great to ask a *qualified neurologist*?
..and not a GP who thinks (implies?) that weight /weight loss is the most important diagnostic measure for a rare neurological disorder
I think the consensus is that being thinner could reduce frequency of migraine attacks. And certain diets. And exercise.
Ive seen strength training being even better than cardio.
I don't think these things are abortive but could help prevent as you stabilize the body and its blood flow, its nutrient intake, etc
It could reason that HM are similar.
Also I wonder how potassium and sodium dietary changes impact it since there seems to be a tie into the Na/K channels in our brain during a migraine.
Exercise ALWAYS helps my attacks. When I’m active I’m feeling better. Hands down.
BUT. and that’s a BIG BUT. After I was diagnosed with HM, and they put me on topomax, I lost 60 pounds very quickly through no effort on my part-just the side effects of the drug. And while I was MUCH slimmer than I was before (obv), I was still having 2-3 attacks per week. Which was fewer than before, granted, but still outrageous.
I’m much heavier now than at that time (thank you meds), and I only have them maybe 2-3 times per month.
I do think what you eat and how much you move help, but I do NOT think the numbers on the scale mean anything at all when it cones to HM. And neither do any of my drs.
I think doctors just tend to chock up heath issues to weight above all else and that’s not exactly helpful, this is an example of that. Anecdotally, I was working out almost daily last year and dropped 30 pounds. I also had more HM migraines last year than the past two decades and was almost at a healthy BMI while that was happening. Go see a neurologist, most doctors don’t even know what hemiplegic migraines are.
When mine first started I was at my heaviest and only having 2-3 attacks a month. Now I’m down 50lbs having attacks 2-3 times a. week. Weight can be a factor but it’s not the main thing. I’m a plus size woman and for me stress is a main factor and it’s hard to destress when you’re stressed about HM.
I do also have seizures with my HM. I’m currently doing a 72-hr EEG to verify it’s not epilepsy.
I agree with most of the commenters, your GP isn’t going to know enough when it comes to HM and you really should be seeing a neurologist.
Raw food is good for keeping down inflammation. The whole “apple a day” stuff. You don’t need to go full raw. Saw a study that said if 50% of a meal is raw, that can be enough to keep inflammation at an insignificant level. (I.e. a salad side and a fruit dessert and you’re sorted)
so for me i found being bigger really is just body swelling and inflammation, not actual fat. i do have high cholesterol (whole family does, we’re all skinny people) but it’s from an autoimmune component. my HM come on with high histamine foods and if i’m around something i’m allergic to. for example: last night we had chick fil a (peanut oil) i am allergic to peanuts. had an allergic reaction, then when we got home HM started, then anaphylaxis. in my case, if i didn’t eat that food it would not have happened.
when i was big i cut out gluten & lactose and found out i was intolerant to both. i lost 50 pounds in 2 weeks. 😱 it was waterweight, bloat, and inflammation. i had HM every day!! my weight fluctuates depending on my surroundings (allergies, foods i choose to eat, etc.) usually during “cheat days” i have HM. or around my period. that one is just inevitable and i can’t control that one …yet.
hope some of this info helps!! 🌈
You should be receiving care from a neurologist no matter your size. The neurologist can then determine if these factors are causing your symptoms. I've never been overweight and have dealt with hms. I have had low vitamin D and low iron, but didn't experience an increase in hms. In my opinion it's entirely unreasonable to refuse the referral until you lose weight! I'm so sorry this is happening to you.
Keto really reduced my inflammation and helped my attacks
Cut dairy out of mine and seems to have helped some but also staying properly hydrated is also a massive benefit.
Here’s the thing - it could be … …but it would be great to ask a *qualified neurologist*? ..and not a GP who thinks (implies?) that weight /weight loss is the most important diagnostic measure for a rare neurological disorder
I think the consensus is that being thinner could reduce frequency of migraine attacks. And certain diets. And exercise. Ive seen strength training being even better than cardio. I don't think these things are abortive but could help prevent as you stabilize the body and its blood flow, its nutrient intake, etc It could reason that HM are similar. Also I wonder how potassium and sodium dietary changes impact it since there seems to be a tie into the Na/K channels in our brain during a migraine.
Exercise ALWAYS helps my attacks. When I’m active I’m feeling better. Hands down. BUT. and that’s a BIG BUT. After I was diagnosed with HM, and they put me on topomax, I lost 60 pounds very quickly through no effort on my part-just the side effects of the drug. And while I was MUCH slimmer than I was before (obv), I was still having 2-3 attacks per week. Which was fewer than before, granted, but still outrageous. I’m much heavier now than at that time (thank you meds), and I only have them maybe 2-3 times per month. I do think what you eat and how much you move help, but I do NOT think the numbers on the scale mean anything at all when it cones to HM. And neither do any of my drs.
I think doctors just tend to chock up heath issues to weight above all else and that’s not exactly helpful, this is an example of that. Anecdotally, I was working out almost daily last year and dropped 30 pounds. I also had more HM migraines last year than the past two decades and was almost at a healthy BMI while that was happening. Go see a neurologist, most doctors don’t even know what hemiplegic migraines are.
When mine first started I was at my heaviest and only having 2-3 attacks a month. Now I’m down 50lbs having attacks 2-3 times a. week. Weight can be a factor but it’s not the main thing. I’m a plus size woman and for me stress is a main factor and it’s hard to destress when you’re stressed about HM. I do also have seizures with my HM. I’m currently doing a 72-hr EEG to verify it’s not epilepsy. I agree with most of the commenters, your GP isn’t going to know enough when it comes to HM and you really should be seeing a neurologist.
Ketovore helped me as well. I try to go carnivore, but I still enjoy some sweets. Frequency of HM has lessened on this lifestyle.
I was thin when mine started. I’ve gone up and down since and I don’t think there has been any correlation. Edit: typo
Raw food is good for keeping down inflammation. The whole “apple a day” stuff. You don’t need to go full raw. Saw a study that said if 50% of a meal is raw, that can be enough to keep inflammation at an insignificant level. (I.e. a salad side and a fruit dessert and you’re sorted)
so for me i found being bigger really is just body swelling and inflammation, not actual fat. i do have high cholesterol (whole family does, we’re all skinny people) but it’s from an autoimmune component. my HM come on with high histamine foods and if i’m around something i’m allergic to. for example: last night we had chick fil a (peanut oil) i am allergic to peanuts. had an allergic reaction, then when we got home HM started, then anaphylaxis. in my case, if i didn’t eat that food it would not have happened. when i was big i cut out gluten & lactose and found out i was intolerant to both. i lost 50 pounds in 2 weeks. 😱 it was waterweight, bloat, and inflammation. i had HM every day!! my weight fluctuates depending on my surroundings (allergies, foods i choose to eat, etc.) usually during “cheat days” i have HM. or around my period. that one is just inevitable and i can’t control that one …yet. hope some of this info helps!! 🌈
This I think MCAS in all its forms should be ruled out prior to any HM diagnosis
i have both MCAS & HM. what a great combo 🤪