Hi to you all, This is my story (Hemiplegic Migraines) and other problems

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Hi to you all, This is my story (Hemiplegic Migraines) and other problems

Post by dodgybrain on Fri May 06, 2011 11:18 am

Hi my real name is Rachel (Rach) and this is my story so far! in May 2007 after never suffering anything like a headache/migraine before around lunchtime at home i suddenly became very drowsy/weak couldnt stand, couldnt open my eyes and so disorientated so i decided to phone 999 it was presumed or thought i had suffered a hemorrage/ bleed on the brain so was rushed to hospital only to be sent home later that evening told it was only a virus/ infection. 2 days later at lunchtime again (obviously not a good time for me as i later discover this seems to be my worst or kick off time!!) my partners says he was unable to awaken me, i finally become concious 3 hours later in A&E unaware of anything with complete right sided weakness? again sent home told its a virus.a week later feeling very woosy called out paramedics (just so happens to be same guy as last week absolutely brilliant and is not giving in to the virus excuse so discuss my case personally with my GP face to face and calls me back ) 2 weeks later i have my first appt with neurologist (told u he was good Smile still having weakness in right side so was told it was hemiplegic migraine and given verapamil and discharged.
That was that for the year. Next year, one episode done, moved on then next year the same !!! this continued until about 2 years ago approx, then out of the blue (well more and more stress, I am a mum of two a Daughter now 17yrs and son nearly 16yrs (he has severe learning disabilities, severe autism, ADHD, severe communication diffficulties, and VERY CHALLENGING BEHAVIOUR/EPISODES)they have become more often and more irregular can be anything from every 2 weeks to every 2 months who knows when they are gonna strike. I have also developed what seems to be a daily headache as well which doesnt help:(
2 yrs ago i was referred back to the neurologist who requested a mri scan as when the got worse ct scan were not showing anything new. Anyway mri scan came back with more news then i was expecting !!! it showed apparently there was excess csf fluid (hydrocephalus) apparently in the third and lateral ventricle on the other side of the brain, and i apparently have a partial agenesis of the corpus callosum, (pathway/nerves to the brain didnt fully develope at birth??) oh and on visiting the GP i was reading his computer screen and the neurologist had written that i also have a Arnold-Chiari-malformation, which i have now looked up and discovered is a tonsilor piece at the base of the cerebellum that can leak through and cause pressure on the spinal cord (great isnt it the news gets better and better lol) since the migraines have become more frequent, i have experienced totally different symptoms and they seem to change each time. It seems to affect my face and mouth more each time, speech seems to be worse even to the point of actually completely going for 24hrs or more, and it is now even changing sides after only affecting my right side it has started affecting my left side, so we are at the point of trying different meds. I am now on 400mgs verapamil throughout a day, Nortryptyline,toparimate as well as anti sickness and pain killers almost daily so i dont know where we go from here but like so many others I know or have spoken to I feel like one of the lucky ones and try to remember that some one out there is proberbly feeling worse then me Smile
I am sorry if i have gone on too long but its good to let it explode sometimes especially when there are some lovely people out there that do understand and know what its like (and some of them now already cause I have told them how wonderful they help me and others through it all xx (i will shut up now i promise xx)
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Re: Hi to you all, This is my story (Hemiplegic Migraines) and other problems

Post by whitzendJane on Fri May 06, 2011 7:33 pm

Hi and welcome...you are amongst people who understand so don't feel you have to 'shut up'. The whole point of this forum is that we can let off steam and talk about or problems with out feeling like we are alone with or illness.

This is a very isolating condition and I feel the internet has been a great help to sufferers who are often house bound (barr the trips to neuro and A&E).

I am sorry you have had such a frightening time and I do understand about being a mum with responsibilities etc. My twin boys have rare and severe respiratory problems ..so if it's not me in hospital it's one of them. Although not the same issues as you have to deal with I do know what a balancing act it is managing your medication and your children's well being. (((BIG HUG))))

I am sure the others wll be along soon to welcome you.

Jane
xx
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Re: Hi to you all, This is my story (Hemiplegic Migraines) and other problems

Post by Sarah on Fri May 06, 2011 10:16 pm

Hi and nice to meet you. Smile I love the username! Sounds like you've had a rough time. Sad
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Re: Hi to you all, This is my story (Hemiplegic Migraines) and other problems

Post by Sheena Hulston on Sat May 07, 2011 12:05 am

Hi sounds as bad as mine we've all been through it....cut down on the daily pain relief though they can cause rebound headaches though x x Sad
You are with friends here weve all curled up in a ball I used to do it with a wheat bag so hot it burned in a dark room with dark glasses on Doh! All "7" of our kids are grown up sort of but so missed enjoying the grand babies when I was really bad as they are my life.
Remember with friends x x
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Re: Hi to you all, This is my story (Hemiplegic Migraines) and other problems

Post by Tee on Sat May 07, 2011 6:26 am

Hi

Welcome Smile

I am so sorry to read your story - as the others have already said you are amongst friends - and you can talk as much as you like - you do not even have to make sense! We have all been there and all understand. Smile

Being a mum is hard work - so hats off to you - I can not imagine having this and having such a responsibility. I do have 7 in total (3 have left home) but my husband is just amazing and does a lot of the childcare, when I am out of it.

Sheena is right - how many pain killers are you taking? - it might be just the way we are reading your post - but normally you are restricted in their use because they can effect the way the preventatives work and cause rebound headache. I was taking them daily at one point too and was told off by my consultant - it is very hard letting them go but after a few weeks I did feel better on my daily headache pain. I am only allowed 4 a week now. Shocked

Working through the medication list is hard work (I am just coming off Epilm) so I wish you all the luck that you find a suitable mix soon. There are threads about the different types of medication and treatments, would be interested to hear what meds you have tried and how you have got on?

You all know - It makes me smile - that we all have such a crap illness, which never lets up - we deal with this everyday - yet every single one on here is positive and thankful. Maybe its a trait of the illness, only effects damn stubborn people lol - we will not be beat and one day there WILL BE a breakthrough Very Happy

Tee x
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My Story Too

Post by whatgoes? on Thu Sep 22, 2011 7:01 am

Thank you all for posting your stories and comments. It is so helpful when one is struggling with something rare like this. I was diagnosed with Basliar or Hemiplegic migraines in July 2008 after I was rushed to the ER for possible stroke. I was in the hospital for a week for diagnostics and rest and observation, although my symptoms (aura) had long past at admission. Since then I have had a few minor attacks and was further diagnosed as these being Hemiplegic Migraines. Some of my migraines since then have come with the typical aura symptoms as you has listed, while most have been what I would call typical migraines. Since summer of 2008 I have only had about 4 Hemiplegic Migraines (hence for HM).

I am a 58 year old female, happily married for 38 years, 4 great adult children and soon to be 6 grandchildren, all who live near by. I am post menopausal after a complete hysterectomy in 1994. All together, I have a good life, though I did have to retire early do to other health issues. Still I have lots of hobbies, was doing volunteer work, despite my other health problems. This had been my best summer and period of my life health wise for at least 15 or 20 years. I was so happy and grateful, though I did not think I was over doing things. Then out of the blue, on Aug 23 the bottom dropped out when I had my worst HM ever.

The first sensation I noticed was a strange vibration inside my stomach that worked it's way down into my legs. It lasted for several hours before other the symptoms of the typical HM aura began to unfold, one after another, each lasting 5 to 15 minutes in quick succession: vertigo, weak legs and arms, an odd pressure or heaviness in my head, difficulty speaking, inability to keep my eye lids open, double vision, blurred vision, slurred and drawn out speech, mental confusion, feeling like I could not a deep breath, loss of dexterity, profuse hot sweats followed by bone shaking chills, a sense of falling into a deep troubling sleep, sensitivity to sound, loss of central vision, and unable to move or speak, loss of dexterity, light and sound sensitivity, paralasys that migrated about my body parts (arms, legs, face. ) At the end of this I got a headache but not one I would say was that horrible either. The only thing is, this time I was left with some lingering symptoms ( vertigo and weak legs, speech difficulties, peripheral neuropathy) for a full two weeks before they almost completely were gone. At the beginning of the onset, I was seen by an Emergency Care group, had and EKG, blood work, etc, and nothing abnormal was detected. i was sent home with meds for vertigo. I followed up with my neurologist who confirmed I had another HM but did not have much more to add to the picture. He was not sure why I still was having problems walking and talking.

Just as the lingering effects were starting to go away, I had another attack, bad but not as bad as the previous one. I happened to have an appt to see my endocrinologist for my annual appt that day and he was so concerned he sent me straight way to the ER. There they repeated all the previous tests and did a CT Scan. All came back negative again except my electrolytes were a bit low particularly my potassium. I was really troubled with two lingering symptoms this time in addition to the vertigo, weak legs and speech difficulties. THe Peripheral Neuropathy (hot burning, pins and needles with prickly sensation) was in both hands and arms with some in my feet in legs lasting from early morning hours to mid day then returning the next day. The other being a punch in the stomach feeling, like I can't breath, am weak, can't stand up straight, or move very well. almost a total exhaustion feeling. At this point right now, the peripheral neuropathy and most of the speech problem has gone. I do find I have to speak slower and some times have a problem with words.

Since Aug 23rd, I have had repeated HM migraines with similar auras, only the whole aura pattern is the one hour typical kind not like Aug 23rd one which had lasted more than a day. Each episode or HM has been a different set of symptoms and/ or intensities, as well as a different strength of headache, if any at all. Most headache pain is now on the right side, back of neck and or looped around and across my skull to my temple and into the right eye. Since Aug 23rd's episode, each HM leaves me with lingering effects, of vertigo, weak legs, disorientation kind of brain fog, and a punched in the stomach weak feeling. It has now been a full 4 weeks since Aug 23rd, and frankly I am concerned why these have come and are lasting and even more, why the lingering effects. I question, will ever go away? Oh, I do hope so. My neurologist is a great guy but other than his diagnosis, he has not been very helpful in what I can or should do. This has brought me to the point that I am going for a second opinion next week, and if things go well I may transfer doctors though I wish I didn't have to.

We had a family reunion to go to last weekend and I had to tell my husband to go ahead and take him mom and go on the 4 day trip without me. He was not happy about that, but does not seem to understand what this is really like for me either. He thought the distraction would do me good. I don't know about any of you, but it is true I can mask or over ride some of the symptoms (in a way) or push beyond them even though it is not easy. I explained to him that for me, it is like walking a tight rope. It is do-able, but it is not natural, and it can only be done for so long or far. My body is telling me something different than what I am making it do and to over ride it means that it requires intense focus and control. This kind of control and focus is not easy to do, much less for any length of time. Plus the stress of pushing things seems to make the whole things worse. If I am in a setting with other people when these symptoms come on and I try to push myself beyond them (to speak clearly, to see through the haze, to walk against the vertigo and weak legs) it is all I can do to hurry and get myself to a safe, home setting. There are times I have been doing something and I have had to complete a necessary task that would be dangerous left undone, and I then began to get really jittery jerky muscle movements, body tremors, and it was not a good thing, and I think also made the HM worse over al. For me, I just want to be in a quiet, safe setting and pretty much alone when I am going through one of these migraines.

My first migraines started when I was just entering puberty and were horribly painful, something I dealt with all my adult life until about a year or two after my hysterectomy. I don't know if they were HMs, they seemed different. Still I also know that since my high school years I have dealt with episodes of one or just a few weird symptoms like those in a HM aura. I would tell doctors and they would shake their head at me, tell me it was just in my head, others seemed sympathetic but could find nothing. After my hysterectomy I had a lot of migraines and they began to change patterns. I think it was somewhere in that time they turned to the HMs, with a few symptoms but often with a very strong headache afterwards. Now the headache is often to a much lesser degree but these wild roller coaster ride symptoms. It can be pretty scary for sure, though I know that getting scared, adding stress, is the worse thing to do.

I feel for all of you or your family that have deal share these HM headaches and symptoms. They can be pretty scary and certainly are not healthy. It is certainly not a healthy thing, though we have no choice as far as I can see. I have tried to enjoy a healthy diet, to get exercise, and in fact it is when I start to be more active that my worst HMs come along. And one last thing, I have also noticed that with several of the recent ones that I will be having what I think is a really good day, a real "sense of well being," and then that is when they come along. Is it the calm before the storm? So many questions and so few answers.

Hopefully if we can share our experiences and things we learn though our headaches, doctor visits, and reading research. If we just knew if there were ways to prevent them, lessen them, and means to treat them could be so helpful, indeed WONDERFUL!! I have felt so alone in all of this up until now, so I am so very grateful for this website. Again my deep appreciation to all of you for sharing your stories and the knowledge you have. Best wishes to all, Jerri

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Re: Hi to you all, This is my story (Hemiplegic Migraines) and other problems

Post by Tee on Thu Sep 22, 2011 11:05 am

Welcome whatgoes Smile

That is one amazing post - it describes what so many of us go through - thank you for sharing - I know that must have taken some time and energy to write Smile

I am sorry however to read that things are getting worse for you - there is so much in the post I can relate to - the starting young and it hurting, having odd turns in my 20s and no doc having any idea what it was and then the HM attacks. Even the aura you list - I am just the same, head pain can be mild at times and everything else can be at 100% - leaving you a total wreak.


I even understand your ability to concentrate and mask it - I did this a lot in my early days with HM - but I have to say that will make things worse. My huge HM was 5 yrs ago now and is an experience I wish on no-one - I went into status migraines for almost 3 yrs - yep that is everyday for 3 yrs. I have no idea how we coped, but I was that ill at the time I did not care lol

Like you I had big HMs one after the other and never finished one before another one started.

How did I get to where I am today..................... well I changed lots of things - it was not one thing.

Firstly I gave into it and stopped fighting it all day and everyday - you can mask it for a while and push yourself, but you pay the price afterwards. My turning point was one conversation with a very nice doctor - who told me not to push it - he said ' do what you do today for one minute only two minutes tomorrow' I realised that by pushing myself I never had time to heal. HM is not like any other migraine type; the neurological effects it has can take a long time to heal and you have to give yourself time to do that.

One thing that did help on the hubby front - was to take him to all the appointments- this was good as he could ask questions and remember the answers too Wink - it is at these meetings he realised that this is a life long condition for which there is no cure - just better management. And that management starts with you slowing down and giving yourself some time. Be selfish and do not feel guilty. I gave up the running of the house and the parenting of my kids for a while - I just needed me time.

The other thing was getting a great doctor - and I think getting a second opionion is a great idea - you need a doc who is willing to work with you for a long time and one that understands HM.

Next step is to work out your triggers - there is a list on here - but I found in the early days it was everything- even the good feelings you mention (in fact one of my worse ones, was when I was laughing to myself!) So I tried to keep things on an even keal - not easy, but it can be done. Baby steps. Once you know the triggers you stop doing them - thinking was one of my big ones and descion making - even to the extent of deciding which brand of bread to have.

Then comes the drugs and there are loads- you just have to work through a list and this takes time - as they need to be in your system a few months to get the benefit. A good doc will draw up a plan for you. And there are threads on here for most of them and if you cannot find a thread - start a new one - we will not mind Smile

There is also the alternative stuff - I found that mediating helped a lot - it put me in a calm place and made me switch off - in time I was able to lower my pain levels. I would find in those early days, that just thinking made things worse. The other thing which has helped me is magnesium - it is worth asking for blood work to see if you are short of any minerals. Also indian head massage - sounds an odd one - but it is bliss Smile

The one thing to remember is that even though we all have the same illness the treatments all work differently on each person- this is because there is no migraine only drug available, they were all invented for something else - what works for one person may not work for another. So they are all worth a try.

I am so sorry you are going through this and please do let us know how you got on at the new docs - and what the plan ahead is - and please feel free to fire any questions.

Hug

Tee x


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Re: Hi to you all, This is my story (Hemiplegic Migraines) and other problems

Post by Sheena Hulston on Sat Sep 24, 2011 10:17 pm

HI the more I read about us all being rushed to ER and being diagnosed with stroke like symptoms and then finding its not I now wonder why it takes so long for consultants and GPs to Diagnose HM.
We surly are only the tip of the iceberg that find our way on to here there must be so many of us out there that have eventualy been diagnosed and so many still struggling to get there!!!
It makes my blood boil really that more is not done to get our symptoms OUT THERE so we can get help quicker.
I am having a bad time at the moment and on a bit of a downer as I usually do when a bit sore!! But the more I read of our struggle to initially get diagnosed the angrier I become! More should be done I have pointed this out to my GP on several occasions but all I get from him is that this is rare.... but I point out the signs are startlingly obvious all stroke related!!! with no stroke!! confusion lack of comunication skills loss of sight and the list goes on and on surly its easy to diagnose from this point..... its a simple fact of a sign up in ER and the stroke unit to be aware of HM.
Thats my little rant over with and I think maybe a little bit of pressure on MPs for a sign up may be the way to go for awareness,
what say the rest of you?
Sheena x x On a bad week xxx
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Re: Hi to you all, This is my story (Hemiplegic Migraines) and other problems

Post by Tee on Sun Sep 25, 2011 7:45 am

Go girl:)

Totally 100% agree with you - I have written to my MP and he has written to the health minster - its worth asking yours to do the same - the more letters she gets about this the better Smile

One problem is the amount of time given to doctors during training - only 4 hrs for migraine!

The other problem is getting the media to write about it- I have been involved with 4 articles and all apart from one where turned down by national press because it was "too rare an illness"!

And as you say the symptoms are so easy to spot............ grrrr

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Re: Hi to you all, This is my story (Hemiplegic Migraines) and other problems

Post by whatgoes? on Sun Sep 25, 2011 11:36 am

Thanks so much for your great response Tee. And I am sorry to hear Sheena's story and being in this same party boat with us. This is one kind of party I wish on no one. Tee, many of your suggestions are indeed things I have either done, do, or will try. I agree with you 100%, and I need to revamp my list of dos and don'ts again. Thank you all for bearing your soul and sharing your experiences and suggestions. They do make such a difference.
There was a real reason why I had to keep running once my HM started again. It is kind of hard to believe but I really can no longer doubt it. Not only had my thyroid numbers dropped very low, but we experienced two natural disasters with in days of each other. I believe in emergency preparedness which brings great peace in the time of disaster and I was not really that stressed either. First we had an earth quake then the hurricane. My cousin and I have both noticed that we have problems with certain atmospheric conditions, especially barometric pressure. Why shouldn't it effect our bodies in some way, after all, birds and other animals know to run before earthquakes, tsunamis, hurricanes, etc?
I grew up in another part of the country where we had earthquakes quite frequently, but they were different than the ones we have had here and scientist have confirmed that. These came on slowly, lasted a much longer time, and were very rythmatic in nature. The first I noticed was what sounded and felt like an approaching helicopter, then it was like my washing machine was out of balance, then it was as if the helicopter was landing on my roof, then everything in reverse. When the quake ended, I could feel the internal tremors, not out of fear, but this thing I feel as apart of my HMs. It started and took hours before it stopped. Then each time there was an after shock, whether I consciously noticed it or not. along came the internal tremors and peripheral neuropathy followed by the laundry list of aura symptoms. When I later looked at the quake activity in our area, it closely matched up to the HMs I had. The hurricane came a few days later and I was caring for both my elderly mother-in-law and my adult mentally handicapped brother for a number of days. Being on top of what was happening, and our safety was crucial. Luckily we came through alright though lost power for a number of days and refrigerated and frozen food, and other things were a necessary focus. To make matters worse, my doctors were unreachable due to their offices closed due to the power and distraction problems. Normally I could have and would have backed off, rested, and been kinder to my needs.

For those not familiar with this aspect, vibrations, flashing lights, rhythmic sounds, and similar things can all perpetuate both seizures and migraines. And I do know these things have been some of my triggers in the past as well. I am sure some of you think this sounds weird, but it is true, yes every word of it.

I am looking forward to seeing this new doctor. And should he not be the right doctor, I will keep looking to find one who, as you said will work with me. I have been seeing a Pain Specialist for a number of years and have been through the barrage of medications and combination trials. Now with new information that these headaches were not a fluke but reoccurring, we can begin to make better progress. I now see things that happened in the past that I did not know to link to these migraines. Also, I do look forward to reading your other threads and learning from all of you. Yes, I will keep you posted on my appt and what goes on with this episode of HMs. Again, I am so grateful to all of you, and especially Tee for having this great forum. At last, I don't feel so all alone. Jerri in VA USA

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Re: Hi to you all, This is my story (Hemiplegic Migraines) and other problems

Post by Tee on Mon Sep 26, 2011 2:55 am

I am so sorry you have had such big things to deal with and I am sure the 'flight or fight' instinct in you kicked in big time and has such changed the chemical balance in the brain - whilst you can keep that going for a few days, you are bound to get a let down and pow off goes a HM. But life is life and we cannot avoid all these incidents - although to be fair an earthquake and hurricane is extreme Sad

I agree with you about weather changes and air pressure, I can tell when a storm is coming, as can quite a few on here.

Like a lot of us, you sound up beat and ready to focus on sorting this out - you have a plan and that is half the problem.

I do hope this new doctor will be able to help Smile

tee x

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Re: Hi to you all, This is my story (Hemiplegic Migraines) and other problems

Post by ridsy1969 on Mon Sep 26, 2011 8:18 am

Hi
I am having trouble with coping with HM and my other problems right now. I started with migraines with paralysis in my left arm when I was in my early teens. I had no idea it was hemiplegic migraine back then. I can just remember having a really bad pain in my head and eye and begging my mum to help me as I thought I had broke my arm. (she just thought I wanted a day off school!). We had serious problems in our family and so I wasn't a priority. I was under a lot of stress thoughout my childhood. I kept having difficulty with processing words and although I had been a good pupil with good grades up to 13yrs old on day I woke up with this bad head and eye pain so intense and weak left side and very sick. Then It was just as if I couldn't read and write anymore. Not totally...but my spelling was all wrong and when I read I couldn't pronounce words and they did not make sense to me and all the words in a story were just words. I was in class and made to read out loud. I couldn't. I didn't know what had happened to me. It went on for weeks and I was mocked and picked on, back and forth to eye clinic and docs and then sent to a special reading centre (special school) 3 times a week for 18mths. I cannot say what put me under that stress but once I had got help with that side of things and family life settled I gradually seemed to get back to normal and it seemed at the time really odd to me that I could just suddenly process things in my mind again and read and write again. Since then I have had numerous episodes of this to the extent of me wanting to end my life at 26. Simply because I didn't know what it was or who could help me. Nobody understood. I have always worked full time all the way through until 6 mths ago and now work 30 hours. I became very ill in 2001 when I was bitten by a sandfly in Greece and I now have a heart condition, an arrythmia, fibromyalgia and have finally been diagnosed with Hemiplegic Migraine, which I now realise was what was happening to me all those years ago right through to now. I was a driving instructor until 2006 and now a credit controller. I have just lost my licence to HM as I had my second very big attack but this one whislt driving. I am awaiting DLA. I have had a blue badge since 2010. I am suffering memory loss and having daily attacks. I have left the gas cooker on 3 times this week and I think my partner Debbie is an angel for putting up with me as I am not safe to be around right now! I have been banned now from using the cooker....jml oven only for me!!!! Dawn. X.

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Re: Hi to you all, This is my story (Hemiplegic Migraines) and other problems

Post by whatgoes? on Mon Sep 26, 2011 10:09 am

Dawn, you have really been through the ringer and my hat is off to you for your courage to keep going. Don't give up, never give up, or lose hope, even if you are banned from the cooker. Look around you and there are many positives in life. This evening while I wobbled my way to the dinner table I saw some little chickadees at my bird feeder. It was so cute. There are always good things we can find and others far worse off than we are. Plus as you said you have your Angel Debbie with you. Stick with the site as I am sure that like me you will find comfort in friends who understand and have had similar experiences. I had actually forgotten that I too had a similar experience that came on suddenly in high school. I suddenly unable to read or make sense of written words. felt like I was having an out of body experience which I hated. I never did drugs through many of my classmates did and there I was with a free "high." I too was made to read out loud in class, and fumbled and blundered my way through it, humiliated before my classmates. Life can be cruel, but you got through it and so did I. There are better days came. Times may be hard right now, but the good days will come again. And remember that here with friends, there is strength in numbers. Jerri .... wish I could give ya a big old hug.

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Re: Hi to you all, This is my story (Hemiplegic Migraines) and other problems

Post by Tee on Mon Sep 26, 2011 8:03 pm

BIG Hug Dawn

So pleased you made it to here Smile

I am so so so sorry you have had to go through this since a very small age - migraine in children still sadly goes undetected many many times

But like you and Jerri - I too had times of word and spelling loss - and reading out loud was one of my big anxieties as a child - same reasons as you - could not pronounce the words and sometimes they moved about on the page - I now know this if be aura - I was however a A student and went onto uni and secured a very good job in the city. But have always had writing problems - which I hid very well - god bless spell checker lol I even remember my step father coming to the school to complain that the English teacher was rubbish or I needed special help - so you are not alone.

Just wish there was more media coverage of this - so it gets picked up on early. One of the reasons I started this forum, is that I could not stand to think of someone out there right now a child, teen or young adult - going through want we have gone through and still no one listening - if this forum helps but one person to understand before its too late - I shall be one happy person.

Dawn - Jerri is right - but I already know you are one hell of lady and you have a great sense of humour and a fab partner Smile You could write a cookery book on JML cooking Very Happy

I am sorry about the driving, I know that has been a big blow, but hey you have some really cool wheels still Smile

I hope DLA hurries up for you - there is a back log at the moment - a lot of people are getting that standard letter of we are dealing with it.

Take one day at a time = there is always hope.

xx




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Re: Hi to you all, This is my story (Hemiplegic Migraines) and other problems

Post by whatgoes? on Tue Sep 27, 2011 8:50 am

A word to share about the earthquake and migraines. I have now found several other migraines who said they thought they were the only ones and that they have been in a surge since that time as well. Also a website about "Do Earthquakes cause Migraines." Have not had a chance to read as it was a busy day, my daughter-in-law blessed us with another beautiful granddaughter today. Of course she is absolutely BEAUTIFUL! Bye for now, Jerri

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Re: Hi to you all, This is my story (Hemiplegic Migraines) and other problems

Post by Tee on Tue Sep 27, 2011 10:26 am

Congratulations Smile

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Re: Hi to you all, This is my story (Hemiplegic Migraines) and other problems

Post by ridsy1969 on Wed Sep 28, 2011 7:36 am

Thank you. I have spelling troubles and suffer with OCD so this makes life interesting...which is why I am now constantly asking my partner to help me spell. I do use spell checker at work and am trying to hide this as mush as I can at the moment. It's my 2nd major attack in 2 years. When I say major I mean where they have taken my brain and side and person! haha! Last time it took me 14 months to get back on track and I was still struggling phisically but my brain was getting I thought a bit better. Kept having smaller attacks and never got full strength back in left side or balance. Walk with crutches. But Second big attack at end off May this year and this has been the worst that I think my brain has been affected with memory and processing simple things. I fell asleep on riverbank yesterday while eating my dinner. I get exhausted. BY 2pm im done. I could have been mugged or anything! My mobile rang and I woke. My head was nearly on my knee? I can tell you guys but I don't want to tell work or fail in life. I am/was good at my job and blagging it at the moment. But Ive been getting a fuzzy head and just really so so tired and if I close my eyes at my desk I will be gone. I can't sleep well at night. My boss relies on me. I am known as 'the clown, the joker, the funny one at work.....but what they don't know is that I'm sad and lonely and that it's hard being the funny one in an unfunny world??? ... That said... Humour is the best way forward because I have forgotten how to cry! I feel so sorry that you guys are suffering. I never realised so many people were like me. I have blagged my way through life with this and only now is it getting the better of me. I will get my own back on HM!!! Whilst I have not posted on here until recent I have read your stories and I am amazed how strong and supportive everyone is. Tracey - you are so kind. I don't feel so alone anymore. x...sorry for going on!

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Re: Hi to you all, This is my story (Hemiplegic Migraines) and other problems

Post by Tee on Wed Sep 28, 2011 9:38 am

hmmmm people never see the tears of a clown Sad

I am so sorry, you are having to fight this everyday. I know exactly where you are coming from - my last very big one - now 5yrs ago - knocked me for six and it took years for me to get my brain and body back.

Simple tasks like:

cutting a cucumber - impossible
making a descion - even what brand of bread to buy - impossible
reading, writing, even watching TV - impossible
holding long conversations - impossible

Its so damn hard and oh how I wish I had a magic wand and could sort it for you now....... all I can say is that the brain is a very powerful thing and it can reprogram itself - it just takes time and in some cases a damn long time Sad

The best advance I was ever given-was from a great doctor - who told me 'NOT to push it and what I did today for 1 min you do tomorrow for 2 mins' I am amazed you are holding down a job, hats off to you girl - there is one suborn lady in there Smile But is there anyway you can take a break from work - a leave of absence - just to give you time to heal???

Meds can be good and supplements also, avoiding triggers obviously - but making life style changes too - giving time for 'you' time to just switch off and rest. (I have found both mediation and Indian head massage of help to relax and sleep better.)

I used to sleep soooooo much -a lot of people under estimate the fatigue this causes. Again - it does get better. But sleep helps you to get better - its the bodies way of telling you to slow down.

One thing I did find helpful on the brain front was the brain trainer on the DS - sounds a little odd - but it was something I could do in small steps and see results. I started with an age of about 85 and only did 5 mins to start with - but I did it every day for a year or so and slowly improvement was made Smile

Its a case of baby steps - one day at a time....

Big hugs xxx

PS sweetie - you moan as much as you like - never be sorry Smile


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Re: Hi to you all, This is my story (Hemiplegic Migraines) and other problems

Post by sybs02 on Tue Oct 11, 2011 11:28 pm

Hi, my 12 year old daughter is a sufferer. About 2 years ago, she was terrified at school when she suddenly couldn't see parts of the teachers face, then got pins and needles in one of her arms, then her leg on the same side kept slipping out from under her when she tried to walk. I decided to take her to the A&E department at our local hospital and was made to wait a while (7th in the queue). She rapidly grew worse, and started vomiting every few minutes, and talking gibberish and was also very confused by her surroundings, and saying that she just wanted to go to sleep. When she was eventually seen, she was whizzed upstairs to a ward because she had no fever/temperature ruling out a virus. A children's specialist came round to see her and tried several tests to check the "balance" of her face when smiling, etc. He could not get answers from her to very simple questions - she didn't seem to have a clue where she was. So she was sent for a CT scan. It was normal (Thank God) but we were told that she was probably suffering a migraine with Todds Paralysis. We had to have all this explained to us as this was the first we'd heard of this. She was prescribed Sumotriptan to take at the onset of a migraine. This was completely ineffective. Over that year, she had about 1-2 episodes a month which she and we could live with. She then had a check up with a Neurologist who diagnosed Hemiplegic migraines and said that it was probably hormone related. Sure enough, she started her period the very next day. Her migraines became more frequent to about 4-5 per month so she was prescribed Amitriptyline which was very effective and she went down to having very occasional episodes. However, after a year of this medication it was decided by us and the specialist that we should take her off them and see how she got on. For about a month afterwards she was fine and we were very hopeful. However, the migraines have come back with a frequency and severity worse than before. We tried her on another prophylactic medication which I can't remember the name of but she had a terrible migraine after 1 week and I read damning reviews so I decided to try her on Propranolol which I have read good reviews about. Does anyone else have an experience of Propranolol and how long does it take to work. She has been on it for 1 week but is having a bad migraine today. She is being so brave but it's heartbreaking to sit by and feel helpless and is obviously disrupting her school and social life. Many thanks for listening.

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Re: Hi to you all, This is my story (Hemiplegic Migraines) and other problems

Post by Tee on Wed Oct 12, 2011 2:31 am

Hello there and welcome to the forum..

I am sorry to read your story............... brings back a lot of memories...... hormone migraines are one of the hardest to manage:( But you can grow out of them............ I am not sure where you are - but the London Migraine Clinic have a very good reputation for dealing with hormone related migs a doctor called McGregor is well done in this field.

I wish I had a magic wand for you,,,,,,,, but sadly not, I will say that if she follows the 'norm' pattern, you may find she gets better in her 20's.......... but sadly it can come back in the 30's+.

There are a lot of medications and treatments out there; the Sumatriptan she was given is from a group of Triptans of which there are 7 in the UK. They all work different in different people and its well worth working through the list to find which one works best for her - she should take them at the very first sign of a mig happening and give each one a good try ie a month or so. Does she keep a migraine diary? We have samples on here.

The Propranolol is a preventative - I have not tried this one - but I a sure others who have will comment. The thing with preventatives is you really do have to take them for a few months before you see how you are going to get on with them (assuming you do not have trouble with the side effects) something as a mum you should be aware of - some of these preventatives have horrid side effects.

As I a fellow mum of a child with migs - I would recommend you read the BASH guidelines, it will give you the heads up on what is possible.

http://migrainetalk.forumotion.co.uk/t551-if-you-are-in-the-uk-your-doctor-should-be-following-the-bash-guidelines

The only things it does not mention is a good drug called Flunarazine, which is a calcium channel blocker and is not licensed in the UK - it is perfectly safe - it is just a money thing between medications manufacturers which prevent it getting a UK licence. A good neuro can get it for you from overseas. It is the one which has shown to have the best results statically. The other thing it does not mention is the new Botox treatment - this is still in the early stages and funding is still being sort - but maybe something to keep in mind for the future.

There is a site run by the Migraine Action Charity for migraine in children http://www.migraine4kids.org.uk/ I have not had a look for a while. But it may help.

Big hugs to you both

Tee



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HM number 2 in four months.

Post by TWORTHIN on Sun Oct 16, 2011 6:34 am

HI everyone - HM number two yesterday! Sad
I feel really confused and that I am a failure today! Last night, went to the ER with increasing facial numbness and by the time I got there, my sppeech was slurring and my leg was getting weak. Not as major as June 15th, but still number #2. Had a CAT and MRI - both came back normal. HM is the diagnosis - they have upped the verapumil to see if that can stop the migraines and now I cannot drive again.

I know I am venting but I realy feel down today. I had got the go ahead to return part time to work on the 31st, but my speech is affected again and how can I teach if I am not smooth in my talking?!!

What do others take to ge tover the residual headache I now have? Last time it took 7days to wear off and it was exhausting! I hope this time as the HM was mild, it won't be so bad.

Also, do you need to go to the ER every time? If facial and leg numbness and speech are my big three symtoms, should I go to the ER next time? The information on the internet is mixed but there is the warning of HMs causing strokes or comas.

Thanks to everyone for listening.
Tracy

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Re: Hi to you all, This is my story (Hemiplegic Migraines) and other problems

Post by Tee on Sun Oct 16, 2011 8:40 pm

Morning Tracy

Sorry you have had another one Sad

I have just at the end of one too Sad I take codine to help with the after headache, but only a max of 4 - the rest of the time I hid away and rest...not much else you can do sadly - you just have to stop and rid it out.

Do you know what triggered it?

As for ER - I never go now, but then I have had so many over the years at various levels, that I know what is going on - I only go if something is different. Ironically I was actual in hospital when my last very very big one happened, and stayed there for 8 days and the jury is still out as to whether that was a stroke or HM??? It was different in how it happened so stroke is more likely.

It is something you need to judge on each attack, and decide then. But if doubt - GO.

The key to HM is trigger avoidance - so if you can work out what it was that triggered this last one, you may be able to prevent one again?

Hope you feel better soon - rest as much as you can.

Hug

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Re: Hi to you all, This is my story (Hemiplegic Migraines) and other problems

Post by robbo on Sun Nov 13, 2011 4:34 am

with my hemiplegic migraine , the consultants at my local hospital have never heard of hm, and some of the ones that do think its a minor affair and patronise you terribly.
i think people dont ralise how debilitating they can be , youd think the medical proffesion would know better and be more helpful. im terribly unstable and have had 6 now inside 3 months , and been hospitalised twice . ive got a migraine clinic in december so ill see what good that does..... ive heard that alternate therapies help so im going down that route ..
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Re: Hi to you all, This is my story (Hemiplegic Migraines) and other problems

Post by Tee on Sun Nov 13, 2011 8:36 am

Sorry to read you have had so many in such a short space of time - you must be worn out Sad

Do let us know which alternative stuff you are going to try - a lot of us are trying this now - have a look at some of the other threads.

I am still taking magnesium, zinc and having Indian head massage. I also meditate and beuko breath and all these do help me.

Would be very interested to know what your doing / planning and how it goes


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Re: Hi to you all, This is my story (Hemiplegic Migraines) and other problems

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