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Hemiplegic migraine

Hello everyone! I'm new here I was hoping someone could help. I was diagnosed with hemiplegic migraine in August last year after my first attack in 2014, when I was hospitalised. The neurologist I saw was exceptional. I'm in my final year of studying at uni and stress makes the attacks worse. I have been left to my own devices, which is obviously fine, but becomes quite frustrating when my GP doesn't quite understand the extent of how the attacks seem to be changing as they don't really understand the type of migraine. I take amitriptyline every night and I'm waiting for an appointment at my local migraine centre, as a medical specialist suggested a spinal disc bulge could be causing the migraine and could possibly be helped by having physiotherapy at the migraine clinic. The attacks are getting worse the numbness on my face is a lot worse, I ocassionaly have twitching on my left side under my eye and at the side of my mouth and I'm begining to feel like I'm not in the room at all when this is happening. It's more intense than before. I've read some posts about dietary changes and was wondering if anyone has any suggestions that they have found help with this type of migraine? I'm open for any suggestions such as types of exercise, etc. I really want to try and help myself and prevent the attacks as much as possible especially going into my final semester. Thanks in advance !

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Hi,

I would suggest just the avoiding the usual triggers as I get vestibular migraines. I don't touch chocolate, coke or other caffeinated drinks, oranges, including orange juice and cheese. I know this all start my migraines, especially caffeine and cheese. Massages with essential oils are good too, to help you de-stress, believe me they work as does reflexology. I know I'm probably stating the obvious but hope it helps.

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Thank you so much for your advice, I avoid red wine and dairy products as these both are definite triggers, I will keep an eye out on other triggers too. Massage and reflexology sound like good things to try!

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Hi, Sorry to hear your having such a rubbish time with the semi migraines. I've had them for many years , I'm 43 now and I had my first one in my late teens and they thought it was meningitis to start off with.

I now know it's genetic as I also have ataxia and it's caused by the same game in my case.

One medication that can be really helpful and has reduced the severity and frequency of mine is called topirimate. You do have to start off on a really low dose and build up to a higher dose to get a good effect as as the side effects can be a challenge if you go on too high a dose too quickly.

I'm aware some people who've tried it don't get on with it, but it has made mine and my daughters life a lot more bearable. My daughter takes it for her ataxia though not migraines.

I personally think it depends what's worse the the migraines or the side effects and in my case it was the migraines as I'm effectively paralysed when I'm at my worse and can't communicate and and very sick. It's almost like locked in syndrome.

I believe you would have to be under the care of a neurologist to be given these meds but they are definitely worth a try. Also ask for anti nausea meds if you are feeling sick with your headaches.

Hope you start to feel a bit better soon and get some help.

Take care

Hugs

Lucy

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I have a Dowagers hump. There are some good exercises including posture corrective ones that is supposed to help. Since I have been doing neck and shoulder exercises and trying to correct my posture it has seemed to help

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Thank you so much for this advice! It definitely is worth me seeing if neurology could see me again given the circumstances. I seem to have it every day. Im on a low dose of amitriptyline so it could be worth increasing my dose before I try another medication. It's definitely something to consider though. I really appreciate that, glad to hear your medication is helping both you and your daughter. X

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Have you been tested for Hughes Syndrome/APS, an autoimmmune disease frequently missed or dismissed by neurologists? MaryF

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Hello Mary, I've had so many blood tests done in the last year before they diagnosed me with hemiplegic migraine, due to constant recurrent kidney infections and always having blood in my urine. Nothing was abnormal at all. I don't believe they tested me for this. I had an ANA blood test and that was all fine, as it was thought lupus could have been a possibility due to my polymorphic light eruption. Is this condition linked with hemiplegic migraine ? Would it be worth getting tested ?

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Here is the charity website, so you can read about the condition, and under Hughes Syndrome are the 'main tests', we also on the front have a list of UK specialists and global ones. Plus on our forum on here, we also have specialists listed. I would get tested yes. MaryF

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You need to be seeing a neurologist. If indeed there is a spinal problem, physical therapy may be the answer. Amitriptyline was ineffective for my migraines. The “usual” triggers were not triggers for me, so pay attention and see if you can isolate triggers, including physical activities, posture, sleeping positions, etc. You probably need one of the triptans meds for pain relief. Acupuncture is another treatment to consider.

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That is so interesting thank you so much! It does feel like the amitriptyline isnt helping just making me sleep better. I will note down triptans to try as that hasn't been mentioned before and if that will help when I get one then that is great! Accupuncture definitley sounds like an interesting thing to try. Thank you :)

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Triptans are not recommended for hemiplegic migraines because they are vasoconstrictors. It could make you HM even worse and cause neurological damage.

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After having a look online I found info saying that thank you so much!

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A gluten free diet and starch free can also help to lessen HM

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Zomitryptan has worked especially well for me. It is expensive, so it depends on your coverage. Rizatriptan is also quite good and less expensive. Accupuncture has surprised me. I was a skeptic, but after only one treatment, it broke the cycle of almost daily migraines. My acupuncturist is an MD and she seems confident that I will see even better results with several more treatments.

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Thank you so much definitley going to give accupuncture a try!

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Sweetheart, you want the in depth care you got from your neurologist from you GP but he/she doesn't get it. I'm sorry for your suffering. l am a caregiver to a person whom gets these for the last seven or more years. Her's showed progress after the taking supplements Magnesium (oral), Butterbur (specific brand Petadolex), Co enzyme Q10, Vitamin. There headaches when completely away after getting monthly back adjustments from a neuro chiropractor. Her brain goes back to eye seizures and migraines without the adjustments. Good Luck.

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Thank you for all of your suggestions and your understanding, I'm hoping with the right support and self care I can eventually manage them.

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Hi

I was on various drugs daily to try and control my migraines. Some worked for a while others I could not tolerate. A year ago I decided to come off the drugs and try accupuncture. Weekly treatments to start with, then every fortnight and now just once a month.

I am not totally free of migraine but feel that I am in control of my life and the migraine is not in control of me. The attacks are fewer and not severe. The quality of my life is much improved.

It's not a cheap option all self funded , but being drug free apart from when having an attack has made it worth every penny.

I will continue with monthly appointments to maintain this level. Give accupuncture a try and see if it works for you. Don't expect immediate results and make sure you find the best in your area.

Good luck

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Have you read the book Heal your Headache by David Bucholtz? It's a little outdated now but is still a really good read for explaining the mechanisms of migraine, triggers etc. It applies even if you don't have headache with your migraine. Mine are mainly vestibular and chronic though I've had hemiplegic. Good luck.

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