Hemiplegic migraines

[Cookingcookie]

Hello everyone I am just reaching out to be in touch with others with hemiplegic migraine as I have never met anybody else who has it apart from my daughter. I have suffered from migraines since I was a young teenager with Aura and I developed hemiplegic migraines in my late 20s I'm now in my early 50s it's nearly 30 years! I have a long story but I am most interested in meeting others with hemiplegic migraine especially if it runs in your family it has been heartbreaking for me me to see my daughter develop the same condition sending the best regards to you all out there to be honest I have tried to make the most of my life and enjoy every day the good bits and get the most out of my family and friends and have many hobbies my life has not turned out as I thought but I have had many happy choice moments in between terrible suffering and disability it has been heartbreaking from me to see the same condition in my daughter who is currently managing well and under a specialist we are a very close family at least there is understanding and compassion within these four walls and amongst our family and friends I just wonder if there is anybody else out there with hemiplegic migraine that runs in the family all the best to you all and a Happy New Year

[marigoldtea]

I have a diagnosis of Hemiplegic Migraine with severe aura. I really feel for you. I could identify with the way you describe your life, particularly the terrible suffering and disability. It does not run in my family far as I am aware and do not have any children. I am so sorry for your heartache. I hope you find the support you are looking for.

[Cookingcookie in reply to marigoldtea]

Thanks.....i really appreciate you replying and it's good meet another person who has the same condition it's honestly has never happened to me! Very kind of you to reply thinking of you and hoping you are having a better day with all best regards

[marigoldtea in reply to Cookingcookie]

I think its very rare, so difficult to find others with it. I have it particularly severely. It sounds good that you have the support of your family. Thanks so much for your good wishes.

[Cookingcookie in reply to marigoldtea]

Which was why I am so glD you replied thanks xxxx

[Cookingcookie]

Thank you for replying it was very kind and I am sorry that you have a particularly severe form of hemiplegic migraine. During the time I have been suffering I have had some very severe attacks some prolonged and protracted and very severe and I am certainly chronically affected. I would have been lost without the care of my family. There you go we seem to be in the same boat! Wishing you all the very best

[TurtleWings]

I have Hemiplegic migraines and at first none of the doctors I seemed to see knew anything about them. It was really scary for a couple of years until I discovered the symptoms for this kind of migraine and asked a doctor who agreed. Doctors sending me to counselors when I couldn't even talk made this extremely frustrating. I know now I'm physically sick. I have vasculitis an inflammation of blood vessels. And numerous other problems showing up. Now current doctors are looking into Neuro Behcet's disease which can cause migraines. However, that being said I now have 1 out of 3 kids with it and my granddaughter is starting to struggle with migraines also. So I think I have genetic component but my illness exacerbated the problem.

[Cookingcookie in reply to TurtleWings]

Hello it was kind of you to reply I was very moved to hear of your history and that of your family. Do you talk amongst yourselves about ways of coping and treatments of this rare condition? I was so so sorry to hear that you have to deal with other conditions and on top of your hemiplegic migraine which is exacerbated by these. I went to an MS centre about 15 years ago and I was impressed that they had physios and and places for people to meet for a cup of tea and access to counselling if needed and advice for living with the condition I dream of the day when we could have a charity for hemiplegic migraine not just migraine charities and fund more research into hemiplegic migraine and maybe have centres locally for those who are suffering with hemiplegic migraine with a similar setup. This condition is not very well understood and and you really need specialists in the field to be looking after people with this debilitating condition we could do with more research into the condition and academic studies into to which treatments have been tried which treatments have work the best and which treatments are not effective I know people try different things and different things work for different people very much like any chronic condition. I suffered from migraines since I was a teenager and realised that things like my lifestyle as in coffee chocolate citrus fruits bananas even and menstrual periods were all triggers along with being overtired over work stress for example an exam and strip lighting and strong smells such as paint could all be triggers I suppose I learnt overtime to avoid these triggers I remember this of my husband who has a daily ritual of putting on the stove is coffee percolator and then enjoys his shot of caffeine before he starts his day! I am fortunate to live in a house where we are all compassionate towards each other and support you in our hours of need days and weeks and years in my case! I think this is a rare condition and many doctors do not understand it's or are educated about it and when they see it in reality and it looks like a stroke it is frightening for them along with the patient! I'll be happy for you to contact me privately anytime I'm sending all the best wishes to you and your family please get in touch kindest regards being sent you away

[Sophiebun11 in reply to TurtleWings]

I'm just kidding, but it turned out it really was "all in your head" just not the way they meant LOL

I think that regardless the ailment Drs. like to think it's all in our heads until some test proves otherwise, and migraine doesn't have a blood test or xray to "prove" our diagnosis. It is so frustrating and painful but to not be believed is crap frosting on the cake.

Best of luck to you.

[TurtleWings]

Thank you for your kind words. We definitely need more advocacy for many conditions but migraine seems to be poorly understood in the actual medical field. I found when my brain started working again in a manner that allowed me to be able to think again and express myself by saying what I meant to say and not a jumbled mess I could take control with my doctor's and say I have this. I know I do and not just from googling it. Let them rule it out vs ignoring it. Forces their hand when you tell them this is what I need and want done. I can't believe I was left with stroke like symptoms such as stuttering, facial paralysis on one side, seizures, body paralysis on one side diplopia and vision changes, memory problems, an inability to talk clearly and a migraine that stayed for years after original event and numerous other problems that showed up all in one day not over time then was left with no diagnosis, no treatment, and no hope. Go see a counselor I kelp hearing for years but I was already in counseling. My counselor thought I was sick and couldn't understand about doctors not treating me. My family also did not understand and assumed if doctors aren't finding anything wrong it must be mental. I'm still fighting this stigma after they now know doctors have diagnosed me with a lot and it's getting worst. But I had to get better first at least to a degree I could take up for myself. I'm glad to hear your family is really supportive. It's encouraging to hear others that don't struggle with this aspect of their sickness. I was convinced for years nobody cared about any of us. Migraines are tormenting, suffering unlike anything I ever thought I'd have to endure. My migraines and seizures are under control now and I never thought I'd say that. Funny I still don't have complete diagnosis but treatment for vasculitis via immune suppression Azathioprine, is what finally seemed to help a lot. Took a decade but finally some relief. I'd be happy to talk to you anytime.

[Cookingcookie]

It certainly sounds like you have been through a really serious and very horrendous time. I think that many of us migraine sufferers especially with Aura and especially hemiplegic migraine have a similar testimony of experience. I am glad that you were able to find a doctor who worked with you to find out what was going on and also were able to to find out about the vasculitis on top and find treatment for that condition I have really felt for you reading what has happened to you during your hemiplegic migraine and ongoing years of suffering. I think you are right I do not think doctors really understand this condition and also that there is a variation in attacks something more severe than others with serious consequences. I have no idea how to send you a chat message it would be lovely to keep in touch I have suffered from severe form of hemiplegic migraine at* extremely severe over 20-years although I have had migraines since I was a teenager I just wanted to wish you all the very best and please feel free to get in touch for a chat anytime I'm privately wishing you all the very best my heart goes out to you you you have been through so much this is a very misunderstood condition and even the experts don't really understand the mechanism they have the better and standing now and the date and I think that will carry on as the research carries on but there is very little that going on in this field and as he say we could do with more advocates for our condition and your feet on the ground who can care for us I would have been lost without my family and I am fortunate I have a good GP which warmest and kindest of regards

[marigoldtea]

I only just saw that there are more posts on your thread. I am very badly impacted cognitively by frequent daily paralysis that I am not able to communicate very often. I agree that there needs to be more information available for people with Hemiplegic Migraine and better help to recognise symptoms. I am glad you have found others answering your post too.

[Cookingcookie in reply to marigoldtea]

Hello!No problems 😊 I completely understand!

I am unfortunately 😔 in the same boat.......not good day for me either ......shall keep it short but look forward to hearing from you again .....sending my very best regards thinking of you......we should have charity for hemiplegic migraine in this country .....shall we set one up .....as a going concern?

[marigoldtea]

It’s a great idea. Much needed. I could not do it right now, sadly, as I am too badly cognitively affected. Mostly I cannot understand incoming information.

[Cookingcookie in reply to marigoldtea]

I understand......I am in u.k have had diagnosis of hemiplegic migraine 10 years ago .....although had 25 ...migraine since teenager! Can remembermy first one.......vomiting......horrendous experience.....didn't know then what it was.....as I grew older my father just told me it was migraine....wasn't until older I even went to Dr's after years of self management.........but ket getting pulled into m.s investigations.......been under neurologist........but in .need specialist in hemiplegic migraine........no sure where to turn just faced with disbelief and understanding ........I am severely affected ......chronically also........wish could find specialist....want to be as proactive as possible but not sure who to trust to move forward in positive direction........

Thinking of you would love to keep in touch obviously I understand what you going through as same thing is a symptom that I find affects me especially during migraine attacks....sometimes can't speak or totally wiped out.....cognitive problems come with this condition ......I have lists for lists but my carer reminds me of everything daily ....found my phone good with alarms calendar etc

All the best to you.......can you recommend any specialists.....contact me privately if you not up to it ......no problems.......be lovely to keep in touch as and when you can

Take care kindest regards

[marigoldtea]

I have just sent you a private message. I hope you can access it okay. Thanks.

[Twinkle912]

Hi I have migraines with aura and also hemiplegic migraines on occasion leaving me paralysed down my left hand side. My GP had me on preventatives for several years and just said that the paralysis and pins and needles when it didn’t end up getting as far as my left hand side being totally uncooperative as being just part of Migraine. I’ve became a creature of habit - keeping to routines as much as I can to try to reduce the amount of migraines I get and to try to catch them before the develop- easier said than done.

However, my last attack led my husband ( an absolute jewel - he really is) took me to A&E, leading to a hospital admission so at least now Ive spoken with a Neurologist who has explained to me a little about my sensory overload issues.

Both my children suffer from migraine and I am just hoping that they don’t end up with hemiplegic migraines too or ET.

Although hemiplegic migraine doesn’t seem to run in my family other neurological conditions do ( MS, Charles Bonnet, Parkinson’s) just a constant worry about if I’ve passed some horrible genes onto my kids. My daughter is particularly bothered by migraine and has been on preventatives since she was a teenager.

[Kel75 in reply to Twinkle912]

I also suffer with hemiplegic migraine and it has been an eye opener, reading this forum.I am so sorry to hear about the continued issues you have had. I have been struggling with my attack consistently for the past 5 weeks. They started about 9 years ago and when the attack starts I seem to get them in 5-6 week blocks. This time it is behaving very differently and is impairing my mobility 24/7. In the past the severity of my symptoms increased, during attacks, under strip lights. I have left side weakness and sometimes complete loss of feeling, struggle walking, brain fizz and pressure on my brain not headache really, consistently feeling drunken/dizzy, cognitive disfunction, sometimes speech. My neurologist said they are all normal symptoms and there's nothing she can do. Just for me to manage it!

In the past I've been able to understand and manage it (understand it and struggle to cope) but it is behaving different this time. I am normally a very active person. My mobility is really impaired at time. In the past my mobility deteriorated more under lights,. This time, I struggle outside also. Very unpredictable and I am completely lost as to what triggers are intensifying my physical symptoms.

The only meds I have is flunarizine. These were the only ones that calmed it 9 years ago, after trialing others. I'm starting to think, this time, that they no longer work. As I am struggling and it is behaving in similar ways to the times when they were trialing me on meds that didn't work. What medication is out there? I'm told I can't have triptans, as flunarizine is a calcium channel blocker. Has anyone else experienced meds that have no impact. I mean, flunarizine is meant to be for dizziness too, but doesn't do what it says on the tin, clearly!

This is the only place that I have been able to find out some information. Any help or feedback would be much appreciated.

[Cookingcookie in reply to Kel75]

HiKel75 and everyone

I was interested in you trying flunarizine a drug offered to me by one neuro..i saw private........then stopped by a neuro nhs who was anti drug and offered latrimogone as pain clinicians thinking I have neuropathic pain.....n no understanding of hm.

Honestly........found I hsd low b12 after asking g.p to test to point of being deficiency....needing b12 injections.....month later pain improved.....but on channel blocker diltazem for vasospastic angina and wonder if all helping.......

My daughter having very bad time working through preventative medication under specialist neurologist ,........but running up against side effects ...chronic daily and very badly hm.

Any one heard of bubble echo? N hole in heart causing hm?

Some research done long ago ...found micro hole enough for micro clots to form ....mind you low b12 not good either as can cause raised crp n inflammatory states ...... I feel like I've had a stroke when I have h.m and my daughter has worse paralysis affecting her

So very frustrating.........if anyone out there could recommend the top 5 preventative with least side effects.....???

Hm scares the he'll out of me ....but also those who love me and those Dr's who care for me....faced so much disbelief .........but go from belief.... investigations ....to disbelief if nothing on a scan !!! even affected my mobility over 25 years of having severe attacks don't know if by now accumulation effect?

Hm so severe causes inability to talk move ......my daughter seen in local hospital.....faced belief scaned then disbelief...but still had paralysis.....neuro wrote cryptic letter like has hm but paralysis all in the head???

Outrageous Honestly.......then neuro who believes slow With preventative....n trialing different ones but hitting brick walls with side effects........its breaking my heart seeing my daughter suffer so ....chronically and daily........varies in intensity......paralysis affecting one side lasts very badly from weeks to months.....we all relieved when that improves but it comes back n chronically daily affected.......

Fighting to keep trying preventative meds but side effects all interrupting treatment as not working well enough to justify such side effects.....

Top 5 preventative with least side effects.....I don't think even neuro knows this as every patient different...h.m so rare and getting to believe...migraine with aura yes but something plus? ....or just variant....migraine with aura .....not all preventative work same ...so really what I'm asking is top 5 preventative meds least side effects for h.m........any one done a list....I'd settle just for one......of anyone's best working with least side effects....

Can anyone offer their experience?

Even neuro says h.m rare for his experience!

Atleast he's honest and trying and believing. Worth so very much .

Thanks health unlocked community ...national migraine.