hemiplegic migraine
Posted , 163 users are following.
i have recently been diagnosed with hemiplegic migraines. as its such a rare condition alot of doctors dont know anything about it , or how to treat this debilitating condition. i am typing this because i hope that it may help someone out there who is going through this and the doctors dont seem to know what is going on with them.
my symptoms tend to start two days out from an attack. i usually get a nasty ache at the back of my head , its tends to be dull and very painful, a score of 7-8 is normal. my head will feel like a block of lead, and i become very tired and listless. i tend to do alot of sleeping as well. on the second day my balance starts to go and i stumble about and and i notice my speech gets slightly slirred.
the attack usually induces bells palsey to the lhs of my face, my left eye droops as does my mouth. i have swollowing difficulties and loose sensation down the lhs from face through all my limbs. i get paralysis on the lhs in my limbs. i usually cant pass urine so i have to be catheritised, and am nil by mouth. the attacks seem to get worse each time as well , the last time i was taken to hospital in a semi concious state . i usually start to come out of it typically 3 days after the attack and my left arm is the first to fully recover , while my balance and left leg can take 2-3 weeks to come right . that depends on the severity of the attack . i find that i never make a full recovery either , so i am left with short term memory loss and learning difficulties , and am on a soft food diet only. i can only work parttime now as well, my body doesnt like full time hours and i got very washed out. i find 4-5 hours is maximum for me per day any longer and i hit a wall and struggle to go on. the nurologist said that half my brain goes to sleep which causes this. its not curable and they can only try to prevent reoccurance or limit the effects.
ive tried propanalol and topomax , but they didnt help at all , so im currently on amitriptaline. the neurologist started a weekly dose 5 weeks ago after an attack beginning with 10mg and increasing it over 5 weeks to 50mg. i had an attack during this time and am now on 75mg.
with not much being known about these debilitating migraines im surprised that a nurologist or gp hasnt worked with patients who suffer these migraines and written something for the drs to read as a guide to diagnosis or help prevent them. if any doctor wants to do so them im willing to help with this , to aid anyone else who suffers this rare debilitating migraine.
15 likes, 418 replies
rachel12155 sanddancer
Posted
I have just seen your post, albeit from 6 years ago and I was wondering if you still suffer from hemiplegic migraines? Doctors believe I had a hemiplegic migraine nearly 2 weeks ago yet I stilll do not feel I have recovered properly and most informative I have seen states that symptoms should be gone within 72 hours?
Thanks Rachel
karen27167 rachel12155
Posted
This was a recent post. It was my daughter who has been suffering with this since the birth of her son who is now 3. It got to the point where the stroke symptoms were getting more and more frequent and the medication she was given was making her depressed and anxious to a point where she could not function. I got some advice on here to seek help from the Neurological Institute in London and made an appointment with Dr Matharu. She weaned herself off the medication she was on which was actually very dangerous when taken long term and also went on a dairy free gluten free and caffien free diet. The result is that she is now symptom free and very very happy. I hope you might seek the same help as i can highly recommend it. Everyone of course is different so I think a consultation is best.
karen27167 rachel12155
Posted
Sorry Rachel.
I didn't answer properly. With regard to how long it takes to recover. I presume you mean the stroke symptoms. My daughter found that it could take a few hours to come out of it but a few days to fully recover. I think its different fir every one . She had to take medication to bring her out of it as she could not even speak or move. I have heard that for some people it may only happen the once and never again which I hope this is the case with you.
StevenRose rachel12155
Posted
As Karen has said, everybody is different and symptoms can linger a while. What symptoms are you still getting Rachel? How was it at its worst?
StevenRose karen27167
Posted
How is your daughter getting on now? I hope Dr Matharu was able to help her
sanddancer rachel12155
Posted
As Karen has said everyone's sad experiance of hm is different and recovery varies as well.
rachel12155 StevenRose
Posted
Thanks for replying, at it’s worse (nearly 2 weeks ago) I had paralysis of my right hand side, servers headache, dizziness and a generally feeling dreadful. Nearly 2 weeks on I am still feeling quite dizzy and jittery, I have been relaxing most of today and just took a walk to my local shop and started feeling dizzy again. I am concerned about how long it is taking to fully recover I am due to go back to work on Wednesday.
StevenRose rachel12155
Posted
Well if you are still feeling dizzy as you are, work could prove a bad idea. Its possible you have some sort of deficiency as well.
If this flares up again you really need to go straight to hospital by ambulance as these are also stroke symptoms and you dont want to take any chances,
I think considering the symptoms are still ongoing you should see your dr asap, it is a bit unusual that you should still feel like you do. Just my advice Rachel.
Good luck and let us know how you get on,
Take care and best wishes
Paula2019 karen27167
Posted
Karen, I cannot put in words how I feel right now., your post has confirmed exactly what I thought about my experiences with medication, and I am convinced they gave me Tia's and my symptoms were getting worse and worse until I started tapering off my meds etc. I am going to contact the Neurological Institute of London. Thank you so so much for posting on here, am so happy to hear your daughter has recovered, its given me hope.
ADAMH sanddancer
Posted
Hello all, I wanted to tell you all about my experience with HM, and where I am now. I first had my first HM when I was 17. I was playing High School baseball. My hand went numb. I had no clue what was happening. I then had Aura. This had never happened. I told my parents what happened and they said well you probably just got a migraine and you will be fine. Well I wasn’t. They continued. Every month. My friends would always joke and say you always have headaches. Fast forward to about 6 years later when I went to a Neurologist who did MRI's, CT scans and could find nothing wrong. He had no clue what my symptoms were. He said well I’m going to give you Imitrex. Which is one of the worst things for HM. That didn’t do anything. I was prescribed 3 other medications. All Beta blockers, nothing helped. Well I moved from Arizona to Idaho 8 years ago. I met with my Family Dr. I explained my symptoms and said I think I have HM. He said that is HM. I said are you sure. Because I had looked this up on internet and self-diagnosed myself. He said yes. I am going to put you on Topamax. (Dopamax) HAHA. Well I was on that for about 2 years. I started to get really foggy. I was starting to forget things. I was starting to fail at work. I wasn’t sure what was really going on until I researched what Topamax can do. So I came off of them. Side effects never went away. Then I went on Propranolol. That didn’t help either. That was 4 years ago. Last June I was introduced to a Medical device from my father. Being a skeptic I never paid much attention to it. Fast forward to February of 2016. When I thought nothing could get worse it did. I was put in the hospital due to having 4 HM same day back to back. I have had 2 in one day multiple times before. But this was different. I had 4 all in the same day. Consecutive, I thought I was not going to make it. I was terrified. 33 years old wife and kid and I was going to be gone. So the Hospital gave me medication to go to sleep and when I awoke I had the worst headache ever. I stayed in bed for 2 days. I spoke with my father and I will never forget his words. " Son will you please let me help you?" So I had this device now and started to use it. Twice daily 8 minutes at a time. In the first 2 months I experienced 2 HM. However, symptoms had decreased by 50% , no numbness. Then I had 2 more HM. Symptom down 75%. To the point where I can actually still function. I can still work and still have everyday stuff happening. I know longer need to go to sleep and let them pass. So here I am, a sufferer of 18 years and going from at least 24-36 HM per year to 6-10 per year. I am just trying to introduce a device to the community that can help our Community.
Adam
effie_gee ADAMH
Posted
Hi I only just started to read the tread and saw yours about a device, nor sure if you can post details but if so I would be very intererested to know. I had a stroke last Sept and since then 7 very frightening episodes that are stroke-like. The stroke doctor as referred me to a neuro, I suspect he doesn't know wth is going on, NHS neuro is up to 26 weeks wait, so I'm going privately on 18 May. I asked Dr Google and these episodes seem to be a mix of HM and brain stem migraines, but with no pain. I had conventional 'classic' migraines for 60 years so am well aware of my personal pattern...... and these are nothing like that. Interesting to see how few drugs work and how lifestyle changes can make a difference. Thanks to all for taking the time to respond, it makes such a difference to this isolated person who had felt like the 'only one'. Doctors look at me as if I'm daft!
samantha18875 effie_gee
Posted
I decided that the drug route is definitely not for me so all I am seeking from the NHS is a diagnosis. I'm making lifestyle changes that I think have a huge effect on the management of these horrendous migraines.
Its interesting because I would often get a pain in the top of my neck which would guarantee base of skull which would guarantee a migraine was in progress. I've noticed with the hemiplegic and abdominal ones which seem to be the only type I get now, that isn't my first sign. Now it's having to lay down and sleep. Its incredibly frustrating!! I have so much to do. Things I enjoy doing including practicing piano and electrical guitar require concentration and focus and I'm struggling so so badly to be able to even practice for half an hour! Its rediculous. I'm so exhausted right now. I have noticed and this will sound stupid, but my female dog Nala, looks at me a certain way or wants to be close to me more than normal and it's before I've noticed any symptoms. Its like she knows something's not right. Her brother has a look on his face too. Its hard to explain, but its like they can see something about me that I can't.
I feel very nauseous and with perfect timing one of my Rottweilers has jumped on my pillow and is just where I need him so I can surrender to this awful exhausted feeling and try and fall asleep through my head pain.
Its weird how you can have all of these symptoms and no pain in the head, neck, abdomen etc.. and then sometimes you get the whole works. They are all equally dreadful.
I'm not sure what the device is you mentioned someone else mentioning. I'll have to read some past posts to find out so sorry I can't help with that.
effie_gee samantha18875
Posted
Hi, so interesting that you mention about your dogs, it doesn't sound at all stupid - and I saw an old post earlier on where a chap mentioned about his dog being the same - my 2 are very aware of something being wrong with their mummy. Their behaviour at the start of an attack is unusually hyper protective, both keeping close, on my lap, anxious and seeming in their different ways to try to keep me conscious.
The device was mentioned by ADAMH, he didn't name it, just said his father had bought it for him and it was working for him but I'm guessing he was not allowed to put up a link.
How can science do so many amazing things yet not solve our headaches? Tis is an awful way to live, though I admit that to learn that my episodes are migraines and not more strokes would be a huge relief, as dire as these events are.
I dislike pharma drugs though I'm 'persuaded' to take some but take cannabidiol oil as a neuroprotectant, I am convinced that it softened the effect of the stroke that would have been more debilitating. Best wishes and health to all x
karen27167 samantha18875
Posted
My daughter has been experiencing a severe firm of HM. She had no headache . It just started with a strange feeling in her face. Unfortunately the doctors know very little about HM and even less on how to treat it. We paid for her to see a specialist and he put her on some drugs which worked for a short while but as the dosage was increased the results with her general state were not good. Thankfully someone on here recommended that I take her to the Neuro Institute in London. We saw Dr Matharu who gave us very good advice and help. She is now drug free and has also excluded certain foods from her diet. The results are amazing but she has had the occasional blip which we think is due to either missing a meal or lack of sleep. I truely hope you find the same help.
samantha18875 karen27167
Posted
Hi Karen
Thank you for mentioning the Institute you took your daughter to and the Drs Name. I really need to get a second opinion as my notes and overview after my Neuroscience appointment in the TIA clinic are not accurate e.g. No history of migraine?? etc. After my MRI and next visit if they rule out HM and Abdominal Migraine I will need to seek further investigation.
I didn't have a stroke and that was confirmed so I am very grateful it's not that. I am did read that having HM can increase the chances of stroke so if that is true at least I am aware of the increased risk.
I hope your daughter continues to do well.
samantha18875 effie_gee
Posted
Hi Effie
I am glad people like yourself and others have mentioned their dogs contribution to the management of their attacks. It is a great comfort it really is. It does take that awful fearful feeling away. I also noticed that my nausea was worse if I lay on my bed, so a cool hard surface like the floor and hugging the dogs with a light cover over me was better. The slightest movement on my mattress makes me feel more nauseous.
Thanks for explaining the ADAMH device situation. Like you I am so grateful I have had confirmation that I did not have a stroke! It was a huge weight off of my shoulders. I just have to be strict about my eating times and amount of rest and sleep I get. Those two things alone make a huge difference. Stress definitely doesn't help so I also avoid certain people also.
I can feel an attack coming on now as I type this : ( Head pain, eye pain, jaw pain, nausea, constant yawning and my ever present numbness and tingling in hands and feet. I suffer from PMS and have my period now so I don't think the hormones help much. I have fibrocystic breasts which is a problem with Estrogen Dominant body types like mine.
Estrogen dominance may make migraines worse as well as PMS and I found this book called 'Cooking For Balancing Hormones'. (Think that's it). Comes out on the 17 May 2018 and I am going to try out the recipies and advice in there and see if it has a knock on effect with my HM.
Blessings to everyone and hopefully a healthy and as natural as possible way can be found to help with the symptoms. I'm taking a sniff of ginger and lime essential oils mixed on a tissue before I go to sleep.
karen27167 samantha18875
Posted
It was not the HM that increased the chances of a stroke but the drugs she was given prior to seeing Dr Matharu. Our Daughter weaned herself off the triptans which if taken ling term could cause a stroke or heart attack. I wish you well and hope that there is a happy conclusion .