Migraine

Hello there everyone! Hope all are doing okay. My name is Lori and I have been diagnosed with Hemiplegic Migraine. I was wondering if there is anyone on the site that has this rare form of migraine disease. If so, I would love to chat with you. I have had this since 1993 but just recently been diagnosed. Doctor's thought it was Bell's Palsy and Dystonia. It has progressively gotten worse since 2003 in which I am unable to work or drive. I have been disabled due to this. Once again, if there is anyone that has this or knows of anyone, please get in touch with me. I would greatly appreciate any input you have.

Hi Lori! Welcome to the family! Oh, Hemiplegic Migraines huh? We have a few members here that have been diagnosed with this. Also here is some info to get you started off: Hemiplegic Migraine - The basics. I know that this type of migraine can mimic different types of disorders - such as the Bells Palsy and stroke like symptoms. I assume by doctor - you are seeing a headache specialist for this?

Settle in and if you have any questions ask away! Glad you found us!

Welcome to MyMigraineConnection, Lori.

You must find it a relief to finally have the right diagnosis. Did a Migraine specialist diagnose you? Eileen gave you our information on Hemiplegic Migraine. True motor weakness is one of the only ways to tell for sure if it is HM.

Treating HM can be tricky, and triptans aren't used to treat this type of Migraine. If you get an attack occasionally then abortive and pain medications would be the answer, such as NSAID's, antiemetics(antinausea) and narcotic analgescis.

As Eileen said we have a few members with FHM, familial Hemiplegic Migraine, some of who are children. I'm sure they will be along to talk with you.

Let us know how we can help.

hi they have now decided that i may suffer from these two following a tia/stroke 2 yrs ago though my gp says there is no actual diagnosis anywhere to prove this the other gp in the practice has put me on pizotifen(another story) i lost my job back in feb so no what its like to adjust. these attacks are really scary i think evan though i understand why they happen they can take me totally by suprise and lay me up for days my little lad has adapted brilliantly and tells everyone that his mam has a wonky leftside and talks backwards. i personally can cope with it all and have come to terms with not been superwoman anymore because at the end of the day iam here alive and happy evan if ive got a wonky left side. good luck and keep smiling.

Hi Red,

Welcome to MyMigraineConnection. You sound like you have been through quite a bit in the last few months.

Diagnosing Familial or Sporadic Hemiplegic Migraine(FHM and SHM respectively) can be difficult. A full neurologcial work up,careful review of your history and symptoms is imperative to rule out other possible conditions and confirm a diagnosis of FHM or SHM. Is there any family history of FHM? A http://www.healthcentral.com/migraine/headache-specialists.html?ic=4018 would be the best doctor to treat this rare from of Migraine disease.

Pizotifen is an anti-histamine that has been used for Migraine prevention, but I don't think it will do much for FHM. Are you taking any other preventive medications? Some doctors prescribe verapamil for FHM.

Let us know how we can help you further, and we look forward to having you share with us.

Hi Red!

Welcome to the site! Settle in and if you have any questions, ask away! Nancy already gave you some great information to get you started, so anything else you need, give a yell!

quote:

Originally posted by DeputyLori2296:
Hello there everyone! Hope all are doing okay. My name is Lori and I have been diagnosed with Hemiplegic Migraine. I was wondering if there is anyone on the site that has this rare form of migraine disease. If so, I would love to chat with you. I have had this since 1993 but just recently been diagnosed. Doctor's thought it was Bell's Palsy and Dystonia. It has progressively gotten worse since 2003 in which I am unable to work or drive. I have been disabled due to this. Once again, if there is anyone that has this or knows of anyone, please get in touch with me. I would greatly appreciate any input you have.

Hi Lori!
Add my welcome to the pile! Glad you found us!

Hi, Lori!

droolie welcome hugs are on the way ~ a whole googob's worth!

Hi Lori & Red,

My son, Chuckie, is ten yrs old and has been diagnosed with hemiplegic migraines. They are extremely scary to witness.

He has slurred speech, extreme pain in his right eye, spits, disorientated, says things that don't make any sense, limbs/face goes to sleep, vomiting, headache, nauseau, blurred/no vision in strips/or black box in field of vision, right leg collapses and he drags it.

After a bad episode, he takes about a week to fully recover. He gets very clumsy and stumbles. He can't find the words he wants to use. He gets his "b"s and "d"s mixed up. And can't do basic math skills.

Luckily, we have found a wonderful pediatric headache specialist about 2 hrs away. It took us over 2 1/2 years to find her and get the correct diagnosis.

He is weaning off Lyrica and is tapering up on Verapamil. He takes several supplements: Q10, Magnesium, Fish Oil, B Complex. This combo has really helped. His duration and intensity have come way down. He has not had a bad episode since July 3rd.

I wish you both luck with your hemiplegic migraines. The best advice I can give you is to don't give up! If you don't feel confident with your headache specialist-keep looking until you find the perfect one for you.

Take care.

Yvonne-MigraineMom

hi sorry had two bad days feeling a bit more normal but apologise if if get spelling wrong. thanks for the info have read up on this looads but knowing i can shout for help or just have a gripe is great. decided to stop the tablets not doing anygood and at the request of my litle boy who wants his normal wonky left sided mum back (bless puts up with a lot) ive kept positive all through this n not going to stop now what with ramipril for blood pressure simvastatin for cholestral and aspirin (may be physcological but i swear by it) take enough tablets as it is dont no what will happen at docs not due back for month but will show diary my gp great its the new one causing problems luckly shes gone off on maternity now so back to normal as i said before i can cope got good family and friends to call on when needed my problem two independent n want to do it all but i give in sometimes. thanks again.

Hi Red,

Do you mean you stopped pizotifen?

If you contineu to be in pain and are feeling badly you really ought to see some doctor. Is there any other doctor taking her place?


Hang in there.

Hi. I just wanted to add my "welcome!"
This is the best place to be for us migrainers.
Everyone here is so nice and supportive.
At least now you have a diagnosis and can get on the right track for proper treatment.


Sherry

hi Nancy
no have reduced dosage as told by gp if i feel they doing more harm than good. the gp off is not who i class as my dr my gp says that no one has actually diagnosed hemiplegic migraines it has been suggested. think iam caught up in between a battle of dr's find it quite amusing. anyway guna ask about any tablets i can take as and when i have an attack dont like takin too many only young. any advice gladlly received.

thanks

Hi Red,

Please forgive me if I repeat myself sweetie, but a Migraine specialst is the way to go when dealing with a rare from of Migraine disease like Hemiplegic Migraine. It is important to either rule out and make sure everything else checks out ok.

Hang in there.

Lori - dear? Are you still with us? Let us know how you are doing ok?