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.
Hi Sanddancer,
just wondered how you were getting on?
I've just found this forum, as I have been told I have 'hemiplegic type' migraine.
I don't actually get paralysed, but bad pins and needles/fizzing/electric like pain in my limbs/face, left side, and blow you rhead off pain. It lasts days and takes days to recover, although I seem to have residual symptoms most of the time. I've got almost permanent visual problems, balnce etc. Have had 4 brain mri's, vep's and a lumbar puncture etc to test for ms, I have a pineal cyst too.
Any body else out there in similar situation? I feel like I'm going to peices!
Hi Sanddancer and bea66,
I'm really sorry to hear about both of your migraine attacks and how severe they are. I can empathise with you. I started getting migraines when I was 7 - it was really scary for me and I didn't know what was happening to me (facial paralysis, visual disturbance, sickness, disorientation).
Unlike Sanddancer I was really lucky to have a doctor whose wife suffered with hemiplegic migraine and understood what was happening to me. I then began on a course of all different types of medication. Around my mid-teens I started to get cluster migraines and I had to be sedated on several occasions because I was so unwell and couldn't stop being sick. Horrible horrible horrible.
I was then sent to a neurologist for a full investigation and was prescribed the highest dosage of beta blockers. They made me put on weight, feel tired and sluggish plus I seemed to have pins and needles constantly because of them. For me this wasn't a long-term solution because I was concerned about the impact of lots of medication on my body. Luckily the clusters subsided until I was studying at uni, but I was in my 2nd year and worried that I wouldn't be able to get my work done if the attacks kept disrupting my work. I sought out a therapist so help me get through it and to see if I could improve things without heavy medication (I'm not suggesting you should do this or advising you do the same I'm just relaying my own story).
We did quite a bit of work around the fear of migraine that I had and she helped me to release this. I also learnt about myself and that I am prone to stress and this can trigger an attack for me. Based on this I made sure I had a good diet, plenty of exercise and rest and the result has been that my migraines have got better. The attacks are easier to deal with and far far less frequent.
The Migraine Trust have lots of useful information and also a Travelling Migraine Diary which you can fill in to tell other migraine sufferers about your story. They help you to feel less isolated too about being a sufferer as there are 8 million of us in the UK!
I hope you guys find ways to manage your migraine better soon. I blog about migraine and how it has affected me, which I have found to be a great outlet.
Lenks xx
Hi, I too suffer from this rare condition and have found it hard to find any information or help with it. There is so little guidance or assistance out there.
I take tops ax in huge amounts on a daily basis to control mine, but find it leaves me tired and to start with mt body reacted badly, my beautiful long hair fell out!!
A year and a half on from my diagnosis I can work, but I have memory loss, and like you a few days out from an attack, I have a terrible headache, I sound drunk, I become clumsy, and can't think.
When an attack takes place, I vomit continually for 24 hours, it is so awful, but it passes, and I am left with three days of complete exhaustion.
Reading this at least I know there are a few more bodies out there feeling the same as me!!
Sunshine xxx
Hi sunshine and everyone. This has been a true nightmare. No meds worked for me and they cant decide if i had a tia or not. I woke 3 weeks ago totally numb down lhs and was incoherant. I havnt been right since. Ive had two episodes of sharp needle type pain in my head and numbness which wont go away. I see my gp today . He called me in straight away after a phone appt.
I honestly think if there is questions and no firm evidence they dont know what to do and migraine is the easiest way out for them.
Hi sand dancer
It took months for me to get my answers, first they thought I had a stroke, but I had a fabulous doctor, who was onto the hospital for me, saying I was too young for that, then they thought brain tumour, so it was a relief when I found out what it was. Whilst day to day life is hard, it's better than what could have been,
What meds have you tried?
My consultant told me, if the first combination didn't work there was lots to try, so not to give up
I guess I was lucky, the first ones did, although I did and do have lots of side effects, bur they are better than not taking them
Sunshine
Hi. Ive been a guineapig and had all i can have. None worked or i reacted to them. Ive had yet anothet spell of it and back in hospital . So no further ahead
Hi,
So sorry to hear that nothing is helping you, and you are having such bad reactions to all medication. There must be some combination that can at least help with your symptoms, it's such a horrible existence living in so much pain all the time!
What has your doctor been able to do, mine is a star, as is my consultant, I have excellent care and have not had a hospital admission yet, though I take massive amounts of meds daily, life has changed completely from what it was to where I am now, it had too, you just have to keep on at everyone to try new things for you, they can't leave you with no help and no meds.
Sunshine
Hi, I was diagnosed HM 2 weeks ago. I don't get full paralysis but do get some in my left hand side. I don't suffer with what I thought of as typical migraine headaches, I get a feeling of pressure in the back of my head and headaches on about a 5 pain level score. For me the most serious symptoms are severe dizziness, confusion, loss of balance, visual disturbances, speech problems, pins and needles(quite bad in my face/eyes and throat) and weakness in legs and arms and tinnitus. I was told by the Neuro it was Migraine Aura but not given any other explanation or details about the condition, it was my Gp who looked into my symptoms and confirmed my symptoms match HM. I agree there ssems to be no really helpful info anywhere about this,
What I can't seem to find is, will I have this for life, is it constant or will it come and go (currently it's constant) and what are the long term effects? All I know so far is that I am more at risk from strokes.
I have only just started Pitzofen which has been started at a very low dose of 0.5mg per day for 21 days, increasing to 1mg from then on and to be reviewed in 3 months. So far I have only notices a small improvement in that I seem less confused buy all the other symptoms are still the same. Compared to other stories on here my med seem quite minimal but I guess they starting me off conservatively.
I feel for anyone with this condition, it is awful and I had never heard of it before. Any advice/help anyone can give with understanding this would be much appreciated, Like Sanddancer I feel a bit lost and uncertain at the moment,
Thanks x
Hi BunnytheCat
You will probably have this condition for life, and will learn to control it with meds, you are lucky, having such a minimal dose of meds, most people have high doses of meds to control the symptoms.
There is very little info around about this condition as it is rare, best advice is learn to control it whatever suits you, and adjust your life accordingly.
If you look at my posts, you will see we all suffer from the same things, blinding headaches, loss of balance,speech problems, pins and needles, tiredness etc, I also have tremendous vomiting, and a constant 24 hour a day headache!!
Take whatever help is out there, and talk to people who have HM, we are the only ones who fully understand what you are going through!!
Sunshine xxxx
Hi again,
I just wanted to add/update. I'm more or less the same as sunshine, but no vomiting. Never have, although \i do sometimes feel nauseous. I've tried just about every combination of drugs now too, but can't tolerate anything, although I still take triptans nasal spray, which have limited success and I HATE the way they make me feel, and am on a daily slow release beta blocker, and aspirin. I'm still seeing the neuro, and was told in January that I have 'mild' ms, but have declined treatment (more drugs) for the time being. I think there is still some question as to exactly what is causing what, and I'm feeling like a cross between a guinea pig and a pepper-pot (needle holes).
Life goes on though, and it becomes less frightening as you begin to realise you will recover from the attacks, however sacry and horrible xx
Hi, am new to this site as I am doing research on a different subject but like to keep up on any info re hemiplegic migraines. I was diagnosed about 7 years ago with hemiplegic migraines having had 'normal' ones since I was a child. done all the regular drugs on offer from the doc with no joy and the locum thinking I'd had a stroke because of the paralysis, facial drooping and slurred speech, when finally I saw a new doc in the surgery who put me on Epilim. This has been a miracle for me as I now only have one migraine a month - down from 2 a week and out of action for 3 days!! It still lasts 3 days but that I can cope with. Can't take beta blockers cos of my asthma. Also take Maxalt melt as I vomit and this way I can take them when I feel an attack coming on and not worry about throwing up my meds!!
Epilim may be worth looking into if nothing else works x x
Hi All,
This week I was rushed to hospital with what they thought was another stroke. I was mortified to hear it was 'only a migraine'. Having no previous experience of migraine before, I really thought they were just a bad headache....HOW WRONG WAS I?!!!!
I've had a number of TIA's before & 1 full stroke so I thought it was another. For 2 weeks before my attack I was really irritable with my poor hubby. I felt sick all the time, tired, headaches(which I don't normally suffer from) & right sided weakness. On Wednesday I was having my lashes done & realised I couldn't close my eyes properly, I just felt so ill too. When making my next appointment, I was talking to the receptionist & my speech suddenly 'went' I knew what I wanted to say but the words wouldn't come out. Apparently, my face had dropped on one side so they rang my hubby who turned up & the ambulance was called. I couldn't believe it when they said it was a migraine!
It's now Saturday & I feel terrible. The headaches won't go, I went shopping yesterday with my hubby but it was too much & I had to come home & lie down for the rest of the day with all the blinds closed. I keep feeling dizzy, nauseous, headaches are awful, still irritable & have the paralysis. Can you give me some advice please? I don't know if I should drive or what I should do. I should say that I take Clopidogrel & Amitriptyline
Hi all.
I am totally new to all this, never joined a forum before but im so pleased I have found this thread.
Since august I have had 5 episodes which all seem to be hm. After the first 3 attacks I was taken to hospital where they thought I was having a tis ( mini stroke) and have had a course of tests mri and ct etc all have come back negative.
after having my 5th attack last night where I feel very dizzy, have balance problems, slurred speech. Pins and needles all down the left side. Couldnt move my legs and even my jaw went numb. I feel totally out of it and can hear whats going on but cant interact or have a conversation as cant get any words out. Then an overwhelming nausea then just so so tired. But last night I didnt really get a headache. Today ive just been exhausted and even slept this afternoon.
ive had 3 months off work as I was so ill with it plus id been told it was stroke related and petrified.
today I have been to the docs and he seems to think its hm and started me on some meds.
does anybody on here have the so called aura without headache at times.
thank you and all your posts above have really helped.
Hm is a nightmare. And the biggest problem is that no mainstream nurologist deal with this condition. The specialise in other and do migraines as a sideline. I went to National Migraine Centre in London and saw nurologists who specilise in this field. Its donation only. But since going there its been a huge help. Im now on vitiman b2 and have stopped all opiod painkillers. Im 90% better. I strongly reccomend a call and visit .....
I also have hemiplegic migraines. I was diagnosed after my child was born - i had an attack in the hospital when they tried to induce me. I'd had severe migraine with aura before that but doctors had no ldea the scope of my problem even though I told them - guess they had to see it for themselves. I did some research into it because my migraine lasted pretty much straight for about 3 and a half years. I had a couple of TIAs on top of that. Doctors tried so many different medications but a regime was finally settled on and was working. Then I had to move and the new doctors here wanted to try other things. Now I'm dealing with square one again. It really sucks. I don't think people realize the level and intensity of the pain in the head and neck. It is so bad I've had fantasizes of chopping or blowing my head off. The research I did showed that people with hemiplegic migraine also have what is known as basilar migraine. This is what confused my doctors for a long time since I was diagnosed with that type while in the hospital at 18. They are actually the same from research it's just another lovely little trip you get to take when you have this disease. It causes intense pain in your neck and the back of your head. I also get the hemiplegia and ataxia on the left side. I go blind and if I don't projectile vomit then I wish I could because I'm so miserably nauseous. I've had back surgery, had my back fractured and a herniated disc, am missing 2 discs and have terrible arthritis in my back but this is all like a pin prick compared to the pain and debilitating nature of this horrible disease. I feel your pain. I had no luck with calcium channel blockers or most drugs either. I also had a grand mal seizure while in the hospital so I was put on an anti-seizure medicine. That coupled with taking fiorinal with codiene on a regular basis and during periods of blindness using the contraindicated maxsalt when desperate was working. If I got into a grove I couldn't get out of I was put on methylprednisolone. That usually breaks the cycle for a period. I live in the states. Our health care system sucks. I try to avoid going to the hospital at almost all costs mostly because I fear it will make my migraine worse and I won't be able to take the fluorescent lights and long wait time. I also have an arrhythmia which seems to go crazy while I'm having an attack Or about to have one.
I also have hemiplegic migraines. I was diagnosed after my child was born - i had an attack in the hospital when they tried to induce me. I'd had severe migraine with aura before that but doctors had no ldea the scope of my problem even though I told them - guess they had to see it for themselves. I did some research into it because my migraine lasted pretty much straight for about 3 and a half years. I had a couple of TIAs on top of that. Doctors tried so many different medications but a regime was finally settled on and was working. Then I had to move and the new doctors here wanted to try other things. Now I'm dealing with square one again. It really sucks. I don't think people realize the level and intensity of the pain in the head and neck. It is so bad I've had fantasizes of chopping or blowing my head off. The research I did showed that people with hemiplegic migraine also have what is known as basilar migraine. This is what confused my doctors for a long time since I was diagnosed with that type while in the hospital at 18. They are actually the same from research it's just another lovely little trip you get to take when you have this disease. It causes intense pain in your neck and the back of your head. I also get the hemiplegia and ataxia on the left side. I go blind and if I don't projectile vomit then I wish I could because I'm so miserably nauseous. I've had back surgery, had my back fractured and a herniated disc, am missing 2 discs and have terrible arthritis in my back but this is all like a pin prick compared to the pain and debilitating nature of this horrible disease. I feel your pain. I had no luck with calcium channel blockers or most drugs either. I also had a grand mal seizure while in the hospital so I was put on an anti-seizure medicine. That coupled with taking fiorinal with codiene on a regular basis and during periods of blindness using the contraindicated maxsalt when desperate was working. If I got into a grove I couldn't get out of I was put on methylprednisolone. That usually breaks the cycle for a period. I live in the states. Our health care system sucks. I try to avoid going to the hospital at almost all costs mostly because I fear it will make my migraine worse and I won't be able to take the fluorescent lights and long wait time. I also have an arrhythmia which seems to go crazy while I'm having an attack Or about to have one.
I also have hemiplegic migraines. I was diagnosed after my child was born - i had an attack in the hospital when they tried to induce me. I'd had severe migraine with aura before that but doctors had no ldea the scope of my problem even though I told them - guess they had to see it for themselves. I did some research into it because my migraine lasted pretty much straight for about 3 and a half years. I had a couple of TIAs on top of that. Doctors tried so many different medications but a regime was finally settled on and was working. Then I had to move and the new doctors here wanted to try other things. Now I'm dealing with square one again. It really sucks. I don't think people realize the level and intensity of the pain in the head and neck. It is so bad I've had fantasizes of chopping or blowing my head off. The research I did showed that people with hemiplegic migraine also have what is known as basilar migraine. This is what confused my doctors for a long time since I was diagnosed with that type while in the hospital at 18. They are actually the same from research it's just another lovely little trip you get to take when you have this disease. It causes intense pain in your neck and the back of your head. I also get the hemiplegia and ataxia on the left side. I go blind and if I don't projectile vomit then I wish I could because I'm so miserably nauseous. I've had back surgery, had my back fractured and a herniated disc, am missing 2 discs and have terrible arthritis in my back but this is all like a pin prick compared to the pain and debilitating nature of this horrible disease. I feel your pain. I had no luck with calcium channel blockers or most drugs either. I also had a grand mal seizure while in the hospital so I was put on an anti-seizure medicine. That coupled with taking fiorinal with codiene on a regular basis and during periods of blindness using the contraindicated maxsalt when desperate was working. If I got into a grove I couldn't get out of I was put on methylprednisolone. That usually breaks the cycle for a period. I live in the states. Our health care system sucks. I try to avoid going to the hospital at almost all costs mostly because I fear it will make my migraine worse and I won't be able to take the fluorescent lights and long wait time. I also have an arrhythmia which seems to go crazy while I'm having an attack Or about to have one.
Evening,
I have been having a really bad time recently, I had a terrible headache for ten days, I couldn't get rid of it no matter what meds I took, my topamax just wouldn't work, I just wanted to sleep, all the time, this illness just takes over your life if you let it!
I think that I am lucky though, I have a great doctor and consultant, although I don't see him, I haven't needed to for over a year, I medicate myself, they are fully supportive of whatever I need, I am also lucky that on the whole my topamax works, be it that I take huge amounts on a daily basis, I have found a drug that allows me to have a type of life. I have a headache every day, 24 hours a day, feel sick daily, tired, but as long as I rest, eat, take my meds, have holidays etc, I can live a life and work, and I will take that
After I had my kid. I had one that went on for more than 3 years. I mean with a day or two a month where it was mild and that was it. It was HORRIBLE! While I was pregnant it was the WORST because I had so much pain and I couldn't really take anything to help it. I found that as I got older and after having my kid it got much worse. It also caused serious complications when I had a child. Problem I'm having now is that I'm in a new area and new doctors like to try new things. This is of course at my expense. I can't take Topamax (tried it) because I've had kidney stones and it was causing kidney trouble for me. When I was younger I tried to not take anything at all except when super desperate but after a 3 year long headache that idea kind of went out the window. I had a pretty good regime that was working but of course it wasn't ideal but neither is having this horrible disease.
I had a new thing happen to me the last time I had an attack. I wonder if anyone else has had this happen. I was laying in bed covered in heating pads - had taken my meds but they weren't working. Sometimes if I get into a sleep state I can get some relief from the pain - sometimes the pain wakes me up but anyway here's the new weird thing.
I couldn't move at all. I was completely paralyzed. I was conscious and trying to reach for a phone but no part of my body would move at my command. I've had paralysis on my left side before but never had it happen where I just couldn't move any appendage at all. Has this every happened to anyone else with hemiplegic or basilar migraines?