Hemiplegic Migraine

[Sticks95]

Hi, Im 21 and was diagnosed with Hemiplegic Migraines in may. They thought i may have had a brain tumour or a bleed on the brain and thankfully they both came back negative. My specialist told me that i had had a 'thunderclap' headache which caused me to be in bed for 6 weeks with the left side of my body being paralysed. I get a hemiplegic migraine every other day now, had to lower my hours at work etc. I have been on about 10 different types of medication all of which were unsuccessful. But recently i had been to a private doctor to have a 'Greater optical nerve block' injection and it has changed my life. For the first time in about 9 months i had no headache or face droop. I have to have one every 10 weeks now. As i cant live and rely on this treatment i will have to try more medications and even botox. This year has been shit to put it plainly lol got to try to stay positive. If anyone else feels my pain please reply I feel very alone aha!!

[MaryF]

Do you have any relatives past or present with autoimmune disease including thyroid, early heart attacks or strokes, migraines and perhaps miscarriages etc, if any of this applies come back to me. MaryF

[Sticks95 in reply to MaryF]

Hi, thank you for your reply. The only thing that comes to mind is miscarriages but nothing else that you mentioned! X

[MaryF in reply to Sticks95]

Just to rule it out, please think about getting your GP to test you for Hughes Syndrome/APS, the tests are simple to do, but do them at the hospital, as the samples taken are time sensitive:

Lupus anticoagulant.

Anti-cardiolipin.

Beta-2 glycoprotein I.

The first test, is not a Lupus test, just rather a misleading an old fashioned name. People with this condition often have some of these symptoms, so a good idea to rule it out:

Sometimes there is a Thyroid problem also in the family.

nhs.uk/Conditions/Hughes-sy...

MaryF

[Sticks95 in reply to MaryF]

Thanks a lot i will get looking into this!

[MaryF in reply to Sticks95]

I have this, plus other things, if you do, think it likely come back to me as I administrate a forum dealing with this autoimmune disease, but do stay on this very good forum, lots of us are on several. MaryF

[Dollychris in reply to MaryF]

Sorry to 'butt in' on your reply to Sticks post MaryF but your reply interests me. I was diagnosed with Hemiplegic Migraine 40 yrs ago after the birth of my first child when it was originally thought that I had suffered a stroke.

I was diagnosed with Hypothyroidism around 6 years ago and both my parents had heart attacks. Interesting to read your post below.

[MaryF in reply to Dollychris]

Yes more common than you realise, the tests above are easy for any GP to order and not expensive, but time sensitive. MaryF

[MaryF in reply to Dollychris]

Also very common to have a Thyroid problem alongside Hughes Syndrome/APS, come back to me if I can help further. MaryF

[Cally01]

Awe Sticks95 welcome 😆 so sorry you've been having such a horrific time. I am glad they have found something that helps you so quickly though 😁 many of us take many many yrs just finding something that helps.

Check out what mary says and stay communicating we're all just a click away 💖

[Sticks95 in reply to Cally01]

Thank you so much! So lovely to know xxx

[Hillbilliej]

Hello! I have just found this forum and see you have heamiplegic migraine too! I took ill in 2007 with a susspected stroke and or MIA's. For 9 months I was having daily episodes where I would have excruciating pain in my head and paralysis down my left side. The episodes would last between 2 and 7 hours each so for nearly a year I was unable to leave the house, look after myself or speak. I was finally diagnosed with cronic cluster heamiplegic migraines and given every kind of medication possible. It took a further 6 months before they eased. Now 10 years later I have at least 3 major clusters a year lasting 3 to 24 days and many smaller one of attacks dotted in. It takes at least 72 hours for my speech to return so what usually happens is one migraine will trigger another so its weeks sometimes before I can speak. Recently the clusters have increased in frequency and I am struggling. I have been waiting for months to see the consultant and now have been told that I won't get an appointment until the new year! I find it really sad that people who are suffering have to suffer for months and months before even being able to get help. I also now have temporal artritis possibly caused by the length of the last cluster! I am just wondering if its just being in south devon that means I have to wait so very long or wether this is a problem everywhere? It is nice though to be able to finally find someone else who has the same as me!!!

[Sticks95 in reply to Hillbilliej]

Hillbilliej thank you for your reply! I can confirm that the wait is the same everywhere to be seen! I live down in suffolk and even to have an MRI to see if i had a brain tumour I would have had to wait 9 months! Luckily my grand parents paid for me to go privately because everyone was so worried so i was seen within a couple of weeks! Im sorry to hear your also having such a terrible time, i dont get trouble with my speech i just cant really think straight and obviously the left side of my body is very weak and my eye droops like ive had a stroke. Ive had loads of tests and medication but i dont feel like anyone takes this very seriously? Are you able to work since you've had this condition can i ask? Ive had to reduce my hours but im still finding it very hard xxxx

[Countrysidegirl]

Hi!

You are not alone with this. I get a milder version of what you speak of with only a little loss of movement down my right side. I tried the nerve block (along with many other things) but it didn't really do much for a long period of time, but I'm really glad it's worked for you!

[Sticks95 in reply to Countrysidegirl]

Yeah the nerve block worked for around 3/4 weeks which i was thankful for i just wish i could find somthing that gets rid of it permanently lol xxx