Familial Hemiplegic Migraine and My Family

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Familial Hemiplegic Migraine and My Family

Post by ladyneb on Thu Jan 19, 2012 9:25 pm

I suffer from FHM. I have had this all my life, but was only diagnosed in 2008, after 2003 of constant hospital admissions and scans and tests. The diagnosis came when my daughter, then aged six started suffering episodes that appear to be very different to mine on the surface, but that have the same effect on her bodily function!

The first phase of my attack is easily seen by people who know what is coming. I appear to zone out, I go grey and I start to slur, my right pupil blows. My husband says it looks like a diabetic hypo, but people can often see it before I acknowledge it.

All I can say is that it feels like everything is slowing down. I can't understand what people are saying and I stop being able to get my body to do what I need it to do!

I get dense left side paralysis....no slight tingling, but a sudden drop. This affects the whole of my left side, so I have facial palsy, problems with breathing and drop like a tonne of bricks. I lose vision usually, and sometimes am just excessively photophobic.

As my heart is on the left hand side it affects my heart rate, and at admission my heart rate is usually around 30bpm, my blood pressure typically at around 60 to 70/30, and my sats in the high 80's%, I have no radial pulse, and around 4 to 5 second capillary refill and no urinary output. I usually have to be in resus for this part of my attacks, and I have up to four to this severity, per week. During this phase, I sometimes slip into what they call a semi-coma and I regularly lose consciousness. I have little or no memory of this phase of the attack, so everything I know I have learned, as I need to tell people what to expect. I get no pain whatsoever during this phase.

The next stage is seizures and cramping, I am usually incontinent at this point as my bodily functions start to return. I go through a few hours of my blood pressure swinging, from very very low, to dangerously high. My right pupil dances froma pinprick to blown at this stage. This is extremely painful, and it's usually around here that I start to get a headache, and start vomiting. I hallucinate, and start talking nonsense. One story my husband loved to recount is when I though the doctor was and elf and he had to leave the room because he couldn't stop laughing. Not really funny funny, but my brain is a bit tangled up by then and as I regain the ability to think and speak all manner of stuff spews out. Memorywise this is a bit patchy for me, but I have some recollection of some events, I little bit like someone with a hangover recalling a heavy night drinking.....I don't drink, at all, ever.

I have ataxia for usually around four days, and everything is a bit slow and heavy, my leg is usually the last thing to come back, so I just drag it around behind me.

My neurologist says it's all normal for this type of migraine, and he deftly deflects suggestions that I have dementia, or epilepsy, of Parkinsons, but routinely runs tests just to double check everything.

My left food it dead now all the time, I lost feeling in it several years ago. The tremours can affect me at any time, and sometimes my head is so scrambled i can't remember how I know my husband, even though we have been together since I was 14 and am now 34!

My daughers attacks are different. She goes grey and cold and just faints. Her heart rate slows, but she has severe abdominal pain and pain and tingling in her right leg. her longest spell in hospital for these attacks was six weeks. Generally she copes reasonably well, and we are treated together, so attend each other's consultations and all letters pertaining to the condition go to both our Neurologists, our geneticsist my endocrinologist, gynaecologist, my neurosurgeon, both my childrens' respective Paediatricians and our GP.

My son showed no sign of migrain until June of last year when he suddenly started staggering around clutching his head, before collapsing, experiencing faecal incontinence and then vomiting. Initially his school thought that he had a virus, but the same thing happened every time he went into one particular building and he was referred to a paediatrician, who has diagnosed him with FHM, as his symptoms are inline with our family history. As he is progressing through puperty, we are finding this occuring more frequently, and if we can get him into a dark room, he seems to improve.

I am tired. Tired for being told how interesting my condition is, tired of having doctors fighting to sit with me and watch, but unable to do anything for me. BUT at least I know what it is!

Prior to my diagnosis, I was told I had had a TIA, which I hadn't; PTSD with panic attacks, when it was just extreme photophobia, and I have had social services called on me because neighbours thought I was a drunkard. I haven't drink alcohol since I was 17, so that was always particularly annoying. In the end we had to endure something called a Section 38, which is where Social Services do a spot check on your property with a view to remove your children from you. I refused to admit that I had a drink problem, because I wa tee-total, but because they had so many different reports of my "drunken" behaviour" they had no choice but to investigate. So they would come and root through my underwear drawer looking for anything that gave me away. Needless to say they soon realised what was going on and I had an unreserved apology from the presiding judge, but it made me wary of going out alone. Now I don't go anywhere by myself and if I suddenly fall headfirst into a trolley, or in fron of traffic, I have people with me who know what to do. my 9 year old daughter is particularly impressive when dealing with paramedics. There have been ocassions when I have had to be heaped into my wheelchair, only to have my daughter thrown on top of me. My husband tries to get us home and into the dark before someone calls an ambulance!

ladyneb

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Re: Familial Hemiplegic Migraine and My Family

Post by Dr Pav Khaira on Thu Jan 19, 2012 10:55 pm

Sorry to hear you're having such problems! I know how worrying it can be with HM, many people are frightened that there is something more serious going on but you've obviously been seen by a neurologist which is extremely important in these cases.

Some of my most impressive results have been by treating HM
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Re: Familial Hemiplegic Migraine and My Family

Post by ladyneb on Thu Jan 19, 2012 11:34 pm

Treatment is the one thing I seem to really struggle with, I have had every test under the sun, and I don't worry anymore as aside from a risk of heart block, my blood pressure seems to be the most dangerous thing.

Verapamil was my wonder drug, but it took my prolactin up to 3265 and I was lactating and slurring all the time, with major resting tremours. It also stopped my periods, which my gynacologist thinks may have been the real reason it was so successful in stopping my migraines. I went for nine months without one! During this time I manage to claw my life back and started doing vaguely "normal things"!

What do you do to get impressive results?

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Re: Familial Hemiplegic Migraine and My Family

Post by Dr Pav Khaira on Thu Jan 19, 2012 11:40 pm

There are lots of things I do, but management is based upon managing noxious sensory overload to the brain and letting your body cope better. My success rate is over 90% in managing ALL types of migraines, and this can be anything from 20% reduction in pain to complete resolution and no more medications. My typical results are an 80% reduction in symptom frequency and severity in around 6 weeks.

A lot of people think I only do 'a few things' but I'm actually licensed to use Botox for migraines too, but it is NEVER my go to choice for treatment simply because other methods are significantly more effective.

I'll be lecturing later this year to doctors and dentists about pain management which I'm looking forward to!!
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Re: Familial Hemiplegic Migraine and My Family

Post by ladyneb on Fri Jan 20, 2012 12:28 am

I don't really get pain, or at least I can't recognise pain very well, my nerves are a bit jangly, but I don't get headache either very often, and it's not a significant feature.

My problems are more that everything shuts down, so my output is minimal. I don't get a little loss of sensation, I get dense paralysis, memory loss, psychosis, ataxia.

Can you help with that?

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Re: Familial Hemiplegic Migraine and My Family

Post by Dr Pav Khaira on Fri Jan 20, 2012 12:58 am

I have treated HM successfully, it's not easy and the success rate is lower but if it's a true migraine then yes.

I'll be doing a video blog within a week to explain WHY migraines occur (on a simple level anyway) and will let you know when I post it. Once you see how I describe it, what I do makes a lot of sense Very Happy
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Re: Familial Hemiplegic Migraine and My Family

Post by ladyneb on Fri Jan 20, 2012 1:22 am

Thank you, I will look out for that.

My neurologist is certain it is true migraine, my GP and I were questioning the diagnosis, so he ran through a long list of reasons that made him think it was migraine and there were so many I believe him. He seems to think every little detail is a perfect fit.

I note on here though topics about stress and high blood pressure...I am super chilled and have very low blood pressure, so that seems to be different from the norm? My friends often joke that my brain is wired up wrong, because I am super happy, all the time, and inappropriately so, according to some of them, some of the time. My GP likewise can't understand how I put up with what I do and remain so cheerful, but it's genuine, I'm not putting on a front, I get very tired, but I'm always happy.

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Re: Familial Hemiplegic Migraine and My Family

Post by Dr Pav Khaira on Fri Jan 20, 2012 1:50 am

We don't know WHY migraines occur, but we do know WHAT they are. I've said this before but I'll explain again if thats ok?

Migraines are a disproportionate response by your brain to abnormal sensory modulation to normal sensory input.

What is means is your brain over reacts to part of your sensory system which is telling it that it is receiving more information than it actually is.

What I do is SIGNIFICANTLY reduce sensory input going to the brain and this lets the body cope better.

This also explains why the vast majority of 'triggers' are high sensory input things such as smells, sounds, lights etc.

For me, it's not about chemical releases in the brain, that's when a migraine has already started. It's about sensory regulation to prevent them in the first place
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Re: Familial Hemiplegic Migraine and My Family

Post by ladyneb on Fri Jan 20, 2012 8:58 pm

That makes total sense, we also have strong Autistic traits in the family and hypersensitivity is the primary feature that puts us on the Autistic spectrum.

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Re: Familial Hemiplegic Migraine and My Family

Post by Tee on Fri Jan 20, 2012 9:55 pm

Hi there - glad you joined and posted.... just saw your email will answer that in a min....

I have just started to read a book! (get me) Called The Migraine Brain - not sure I agree with it all, but its interesting that the migraine brain could be different.... I also have found that most people in here have a great sense of humor, are intelligent and can still smile...... even though they have days and days of aura and pain...

What Pav says is very interesting, I have even tried to explain to people that my senses are so acute and all firering at once ..... Botox is the only thing so far which has reduced the daily pain and aura without side effects, so it will be interesting to see what Pav comes up with...

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Re: Familial Hemiplegic Migraine and My Family

Post by Dr Pav Khaira on Fri Jan 20, 2012 10:04 pm

Tee,

LOVE what you're describing!! And that is EXACTLY what is happening. The sensory input coming in is exactly the same, the brain of a migraineur for some reason over responds to this normal sensory input. We know WHAT migraines are, just not WHY they occur.

If we have less sensory input going into the brain, it's more likely to cope better.

It does get MUCH more complicated, simply because 90% of migraineurs have jaw joint problems which nave not been diagnosed correctly or managed correctly, which results in additional unexplained pains. Doctors and neruologists do not look at this aspect because it is not in their training. To be fair, after spending 5 years at uni we only had a total of 5 hours or so worth of training on jaw joint problems, so most dentists don't understand it in a great depth either. When I managed my own migraines and jaw joint problems, it peaked my interest and I've been on a learning crusade ever since!

You can call me a geek if you want but I love the pain management stuff!
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Re: Familial Hemiplegic Migraine and My Family

Post by Tee on Fri Jan 20, 2012 10:34 pm

Smile and I am so glad to call you a 'geek' - we need more of them Very Happy

And you are correct the amount of time any doctor gets on headache / migraine is dismal......... my MP even tried to help, and the Health Secretary just passed to the training board, who never bothered to reply!!.

Personally I think too many things are under the migraine umbrella - and in time - they will find that different things cause the same symptoms - so there may be many different reasons why they happen etc..... maybe why so many meds work different on everyone.

But I totally agree that if you calm your sense input you have better control - once you know your triggers - you avoid them or manage them better - but I am inetersted to see what your working on as it would be nice to go out in a crowd and enjoy something.....like an open air concert...... with no worry about the amount of people, the smell, the noise, the weather Smile

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Re: Familial Hemiplegic Migraine and My Family

Post by ladyneb on Fri Jan 20, 2012 11:02 pm

My dentist has been a great help and he told me all about my jaw problems.....as for the sensory stimulation, or over stimualation, it has a big plus side too, as we seem to see and hear and smell things more intensely, which makes life very vivid and exciting, when I can stand up and or see!

That said I live in the middle of nowhere, so don't run into much of the artifical world, that my body can't handle, or too many people!

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