Hemiplegic Migraine Question, please help!

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Yuurei
New Member


Date Joined Mar 2012
Total Posts : 2
   Posted 3/21/2012 8:57 AM (GMT -6)   
Hi everyone and thank you for taking the time to read and, hopefully, respond to this post.
I am a 26 year-old female who has had the great misfortune of experiencing a hemiplegic migraine.
I suffer from silent migraines daily, and have seen a neurologist about it but those I can deal with. What frightens me are the stroke-like symptoms with the HM.

With a normal migraine I will first experience the blind spot-where if you look at someone in the face, their nose and mouth disappears? Then I get the zig-zag lines and after those fade away, the pain strikes. Then it's usually nap time and after I wake up, I feel a little sore but for the most part, I'm back to normal.

The first time I had a HM was when I was 18. I noticed my hand felt hot and numb and I couldn't feel my ring or pinky fingers. about 15 minutes later I had difficulty with speech. This was terrifying, I had no idea what was wrong. The people I was with chalked it up to low blood sugar, but I felt so sick I couldn't eat and for days after that I couldn't calm down. I was thoroughly shaken. Finally I was seen by a doctor and then to a neurologist who told me what they where.

8 years pass and I hadn't had one since until a couple weeks ago. The migraine started out like any other, blind spot- zigzag- pain hit but the zig-zag came back and I remember telling my husband this was like a double migraine. After that my hand and nose and teeth started feeling numb and then I lost all feeling in my arm and hand. I couldn't feel texture with my hand, I couldn't feel the pinch and I panicked. The worst part of it was when I suddenly couldn't speak. It was as if my tongue locked up and, knowing the warning signs of a stroke, I stuck my tongue out for my husband and he immediately said, "Alright, let's go to the hospital." I couldn't get it to go straight. My tongue kept veering off to the side. It lasted for only a couple of minutes before it went back to normal but I don't know if that's because of the surge of adrenaline I had or if it was from the migraine, or if it really was a mini stroke. :s

I guess my first question is, has anyone else ever had that problem with an HM before? Having their tongue lock up and ever have it shoot off to the side? Everyone tells me that if it were a stroke then the symptoms would have lasted a lot longer than a couple of minutes, but I can't stop worrying. The ER doctors asked me if I knew where I was and I couldn't find the words to respond. I wasn't able to tell them what day it was or when my own birthday was. It has left me terrified that at any moment it's going to come back.
In the end they told me it was just a panic attack and they discharged me, giving me some ativan, since i do have a history of severe anxiety and I will say it does help. Maybe not with the migraines but it's keeping me sane long enough to try and reach out.

If someone could tell me if they have had the same symptoms, especially with the tongue, maybe it would give me some comfort.
Also, does anyone else feel weak at a certain time of the day? Since the migraine I wake up feeling good but half way through my day I suddenly feel weak, extremely tired, sick to my stomach and it feels like it takes more effort to breathe in. I was wondering if this could be because of hypoglycemia and/or low iron in the blood?

I've scheduled an appointment to see a doctor, but without insurance I wont be seen until May 16th, so I am trying to be proactive and find help in the meantime.

Anything would help- also! Before I forget, I was put on topamax when I was first diagnosed, but it caused my feet to hurt really bad. They would be sitting there, comfortable as can be, and I would get a sudden painful pins and needles sensation in them, when they had perfectly adequate blood-flow. Has anyone else ever experienced something like that while on this medication? And is there any other kind of meds or preventative measures they could recommend for anxiety and HM?

Sorry for the book, I've had a lot on my mind. I await eagerly for your response, thank you all again very much!
Please take care and best health to you all!

Your Friend,

Sasha L.

Daphnie
New Member


Date Joined Mar 2012
Total Posts : 4
   Posted 3/21/2012 11:07 PM (GMT -6)   
Hi Sasha L, I am sorry to hear that you have suffered a HM! I have also been having these kinds of migraines for years. I am 29 yrs old and have many different kinds of migraines... Aura, daily,tention,and just in the last year or so I finally had a Doc mention she thought i was having HM . I had never heard of them before. I have to say the HM are so scary, no matter how many times i have them it makes me so nervous! I had a baby about a year ago and had to be induced because i was having an HM every other day. I stopped having them for a long time but have now had 2 this week... 1 of those being tonight. I have had all of your symptoms and they can consume your thoughts. How could this be normal? I am still weak 2 hrs after my HM. I have an appt next week to do more testing,i hope they have a fix! I have tried Topamax and I had the same reaction except it was in my hands and feet... I hated taking that drug! If you have never suffered a HM its hard to explain the fear that it puts in u. The thought of a stroke makes me and my husband wonder wether or not to go to the hospital everytime.. I am truly sorry, but do know you are not alone! Good luck ..

Yuurei
New Member


Date Joined Mar 2012
Total Posts : 2
   Posted 3/22/2012 4:02 AM (GMT -6)   
Hey Daphnie! Thank you so much for taking the time to read and respond to my post, I really appreciate it. You made my day!
I am so sorry to hear that you suffer from HM as well! I will say that just knowing I'm not the only one dealing with these scary head-aches does help a lot! Sorry to hear you had one just today! They're so rotten and rough! I don't know which is worse- dealing with the headache itself or dealing with the fear when another one will return.
I think I've been having them all week, not fully blown, thankfully. But my nose goes numb and tingly, as does my left ear-lobe and it feels like it's difficult to walk with my right foot. I wish there was a way to avoid them, but it seems like it's all reliant on medication. I heard some things about Verapamil, which is a blood pressure medication, and supposedly works better for some people than Topamax. When I can finally get in to see a doctor I think I will talk to them about that. It might be something to consider when you see your doc next week. :o
Anyways, thanks again for reaching out, I can't express my gratitude and how much better you've made me feel, just having someone who's been there. If you want to keep in contact, for support, you are more than welcome to email me or find me on facebook! http://www.facebook.com/reigaaru or yuurei_onnanoko@yahoo.com.
I hope you are feeling better soon and that you can find a break in between your migraines to get some rest! Best thoughts!

Sincerely,
Sasha :)

fhmno1
New Member


Date Joined Mar 2012
Total Posts : 4
   Posted 3/23/2012 6:19 AM (GMT -6)   
Hi,
I really feel for you i also suffer from this horrible fhm.
 
Can i ask you if you still have issues with balance, tiredness and concentration ?
I'm so bad some days i avoid going out, its actually completly changed my life.
 
I,m having trouble with being able to work to is this also the case for you?
 
Hope your having a fhm free day!
Take care.
 
fhmno1

Daphnie
New Member


Date Joined Mar 2012
Total Posts : 4
   Posted 3/23/2012 1:40 PM (GMT -6)   
I personally have issues wit being tired and concentration. But i also have Fibromyalgia! I get so tired sometimes before i get a migraine,it feels like I took sleeping pills. I wish i had answers on why what and when. I will never stop trying to have a normal life! I also have lots of visual disturbances. They linger for days some times! It has changed my life and not for the better:/ It hasn't been all bad, I have learned to have compassion for other people and just because u cant see there problems it doesn't mean they are not real! I am sorry your dealing with such a hard illness!

fhmno1
New Member


Date Joined Mar 2012
Total Posts : 4
   Posted 3/23/2012 2:56 PM (GMT -6)   
Hi Daphnie,

thanks for your reply. I also thought i may have had this as my body hurts in all kinds of places and its diff every day but doctors have
not been much help regarding this. I suggested to him that i think i may have this and he looked at me as tho i was mad !.

I really understand the compassion for other people just wish most people would think in that way and not look as us as tho we are just going on and on about nothing :-).

Hope you have a good weekend with at least 1 free hour in which u feel normal.

Thanks Again.

Daphnie
New Member


Date Joined Mar 2012
Total Posts : 4
   Posted 3/23/2012 4:19 PM (GMT -6)   
You probaBly do have Fibro! Migraines and Fibro seem to go hand in hand. I hate how the doctors make you feel about it all. Why would I or anyone else for that matter drag on a sickness for years? It is not in our heads. If i was doing it for attention I would get in a more fantastic way! Right? I rarely tell people about my fibro, to many people dont know enough to know its real, or care enough to find out! The trick is to find a doc that believes fibro is real. Ask before you even schedule an appt. If not move on! Good luck

Not So Fancy
Regular Member


Date Joined Sep 2011
Total Posts : 41
   Posted 3/26/2012 10:38 AM (GMT -6)   
Hi there!

Topomax does the same thing to my feet. Makes them hurt so bad I cry. I find soaking them in hot water helps, or just getting up and walking around helps a tiny bit. It only happened 2-3 times a week. Enough that I quit the medicine (though sometimes I wish I hadn't). Topomax was a miracle drug for me minus a few things (seizures, hallucinations and pain in the feet). If it wasn't messing up my work productivity so badly I probably would still take it. I like my mini adventures into topomax crazy-land. Unfortunately, I'd find myself staring into space for 10-15 minutes at a time.

I've never had complete verbal lock-up. Usually I just start spouting gibberish that is somewhat relevant to what I want to say. I'll get hung up on words and just repeat the same phrase (incorrectly) over and over and over like a record until it stops. My hands, lips, and feet go numb. My left eye starts to bubble (no other way to explain it) and then the clouds form.

about 30 minutes later I have a horrible headache and my arms and neck ache so badly it is hard to function.

Anywho, just my input!

I am currently not on medication -- Lyrica didn't help and the side effects for topamax were too bad. Cymbalta did nothing but make me spontaneously vomit all over the place.

opie
Regular Member


Date Joined Jul 2006
Total Posts : 39
   Posted 4/10/2012 6:02 AM (GMT -6)   
Hi there,
I am sorry to hear that you,too, have HM. I have had them for about 45 years. I am 50 now.your symptoms sound pretty typical. Just when I think I have figured out a pattern, something new will happen! Can be very disconcerting! Especially if I'm driving! I do wear a Medic alert necklace at all times.
I do take verapamil and a baby aspirin daily. If I get into an extended episode my husband will take me to my neurologist and I will get a shot of Demerol and something for the nausea. Important to stay hydrated during the episodes.
Coming out of a bad spell now. Had 3 full blown episodes in a 10 day period. Yesterday just got the migraine headache without the paralysis.
My family is full of FHM. In fact, researchers from the Netherlands Group were able to identify the chromosome responsible for FHM from my family's blood work.
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