Fibromyalgia Support Group

Hi--I know this isn't a fibro question, but you all have helped me out with other medical questions, so thought i would give it a try. As you know from a post last week (I think) I have been feeling pretty bad lately. My neuro thinks this---SHM-- might be what I have. Anyone heard of it, know someone with it, anything, any info. I have looked it up and boy it sounds scary. I don't know how someone with this condition would drive among other things. Any info, or support would be appreciated. thanks

I m sorry {{{hurtallover}}} but I have never heard of such headaches.

Before you scare yourself into a panic attack or Fibro flare from stress and worry, why don t you give your dr. office a call and ask for a better explanation.

{{{HUGS}}} Marilyn

I've never heard of it either. I'm with Auntie. I'd call the neuro and ask him to explain it to you.

I just looked it up and would have to say that I have had that type of migraine/cluster headache many times. When I get the headache in my right eye, my right side of my face feels numb and/or tingles. Sporadic means whether or not anyone else in the family has the same type of headache. My father had migraines severely but didn't talk about them much. If the entire side of the body goes numb, it can be frightening because one might think it's a stroke but the numbness usually is only temporary.

I forgot to see how old this message was before I replied, I'm new here, have many chronic ailments including Fibromyalgia, dysautonomia and Migrianes. I was just diagnosed with what the doctor calls "Complicated Migraines" which are the same as the Sporadic Hemiplegic Migraines. The first 2 times it happened I was hospitalized for a TIA (Mini-Stroke). Now we know that it was a SHM. Today I say the neurologist and he prescribed Topomax. This is a new medicine for me as I usually use Imitrex Stat-Dose.

I've been having these SHM's for a long time, and I'm glad to finally know what they are!

New Friend,

Cammy1970

From reading the posts, are these miagrains where you get numbness in your face? I do get those from time to time, my face and ears will go numb. Another thing that will happen to me and I cannot remember the name of it but the neuro called it something, anyway, I will get spots in my head that will go numb and then it will feel like warm water running down my head. I do not have pain then and sometimes pain may come a few days later and sometimes not at all. It is a really weird feeling but at first it was scarry because I thought it was blood running in my head.

The numbness isn't limited to the side of the face, although it might be in some cases, I don't know, just learning myself. My numbness is on my entire right side and lasts from a few minutes to almost a whole day on a couple of occasions. ~Cammy1970

Cammy1970--It is so great to finally "meet" someone who is familiar with SHM. I was on Topamax, and it did help, but it affected my vision so I had to quit taking it. I didn't want to stop taking it, so my neuro tried all sorts of dosage changes to try and help the vision, but nothing worked. We worked with Topa for almost 7 months to figure something out. I am now on Verapamil 160mg 2X a day, it does not work as well for me. I am surprised that your doc let you take Imitrex, mine says all triptans are a big no-no. In fact I have migraines with aura as well,and he won't even prescribe any triptans for those migraines, even though I can tell the difference in the migraine (between HM'S, and MWA) he still will not let me take them.

bc1028--in my experiences HM's include all of one side of the body, not just the face. But this is my experience only, my left side arm, leg, face, all are numb to the point where I can't walk correctly and I trip and stumble because my left leg will drag. I have also had speech involvement on a few occasions where I am unable to talk. This usually only lasts about 1-2- hours for me. But after I have a lot of difficulty finding the right words to talk. Weird I know!!!

I would be interested to know how Topamax works for you once you get started on it. I know it takes quite a while to get built up in your system, and I started out on a very low dose. Have you tried any other meds that have worked...or not. Keep in touch!

I have taken topamax for a while now and it does ok. It really is for my nerve pain and jumps that I have and it does no do well for the jumps or spasms. I can only take 2 a day because they make me tired although I was supposed to work myself up to 5 a day. When I hit 3 daily, it makes me almost comatose. I have tried the lyrica but my body got immune to it and the neurotin I was taken off of because I took it for so long and my live enzymes went up and they thought that was part of the problem.

I bet that is scarry when you do that, it almost sounds like a mini stroke.

I tried Lyrica as well. I think it was moderately helpful, however the cost is what prevented me from continuing to take it. I would like to be able to take Topamax, it was the best preventative I have tried so far for my migraines. But I need to be able to read. I have compared a HM to a mini stroke, in fact I have read about people who are hospitalized for stroke, and later find that it is HM. Cammy1970 is one of those "lucky ones" to have the misdiagnosis. It is a very frustrating thing. I find myself almost having anxiety problems thinking about when the next one will happen. When I'm driving, in public, at my kids events, on and on. Kind of crazy I know, but when the "episode" happens it isn't very fun to see, and I would like to always be home in the privacy of my house. I had one at work in front of some co-workers, boy did they look at me like I had a serious problem, and these people are my friends. Imagine it happening around strangers. Oh well, I have no control over it so shouldn't worry so much.