Ok I wanted to post some of my wierder symptoms and hope someone knows what I am saying….It is hard to describe them for some one to understand because even if someone had the same symptom they might describe it a different way….First here is a strange one……the veins in my neck feel thick from time to time….I don’t think it is the muscles it feels like the veins….The only thing that I can think of is that migraine is inflammation of blood vessels right? So maybe my neck veins get inflamed and that is why they are uncomfortable and feel swollen…Also occasionally I am light headed and want to be able to chalk that up to migraine and not vaso vagal….Also some days my legs and arms feel weak…That could be due to not much activity…I do some but maybe not enough?? I just would feel better being able to chalk it up to migraine r something benign than worry I have some rare disease or something and rush to my doctors and tell her this strange stuff and have her think I am crazy or a hypochondriac I am sure she probably already thinks that……
It’s really hard to know what to ignore & what to bring to the attention of our doctors. I worry about being considered a whiner and/or hypochondriac, too. I’m going to see my neurologist tomorrow … going to ask him about getting off Topamax because I can’t think straight anymore … can’t come up with words for sentences or spell like I used to. (The other day I actually quit in the middle of a game of Scrabble because it was just too much work - not like me at all!) On one hand I think maybe I’m just gettin old. Maybe I shouldn’t have read the Topamax side-effects. Maybe some of this is just in my mind. But in the back of my mind there’s something telling me to give it a shot - go off the Topa & see if I’m clear-headed again. This all really stinks.
I’ve turned your post into a whine … sorry about that. Let’s see … weird symptoms … hard to separate them from the side-effects thing. One thing I used to think was pretty weird was when my throat would sort of tighten up. My voice would actually change whenever I’d have an ‘attack’. Always thought that was kinda funny. Not as entertaining as the nystagmus though. Now THAT’s a trip!
I always have weird symptoms that are hard to describe, so don’t feel bad. I get that weak feeling in my arms and legs sometimes. I thought the same thing, maybe I wasn’t being active enough. But, I think I get it when maybe I have done too much. Before this MAV, I could keep going and going, now forget it. It doesn’t take much to wear me out. I usually get it after a few days of activity. As for the veins in your neck feeling swollen, my neck feels tight and tense a lot. I think that is different than what you are describing though. I am sure MAV could cause that feeling too though. Like you said, maybe it is the vessels constricting due to migraine. I went out and bought a “bed buddy” - it is a oatmeal smelling, bean filled, long pack with a rope handle on each end. I bought it at Walgreens. They are located by the medicines. My dad has one and uses it on his neck after he broke his neck years ago. I microwave it for 1 1/2 to 2 minutes. I put it on the back of my neck. It seems to loosen my neck up and relax me tremendously. I have used one in the past when my cluster migraines hit. I actually have two of them. They are awesome. Maybe you could try one. They are not expensive at all. I hope you feel better.
I definitely get the weak body feeling, and I think it has different causes in my case. Low blood sugar, general nausea, bad sleep, migraine and a combination of them. I actually have it right now. Plus anxiety and some slight slight shaking.
There are days when I have what I refer to as muscle spasms or twitches in both my arms and legs and at night it is like I can feel my pulse all over when I lay down, which I never did before all this started.
I am going this week to see about the muscle problem as some days it is somewhat painful but some days it is just the spasms and twitches.
Plus today something has upset my stomach and it has been cramping.
It is really hard to tell if all of this is something different than the MAV or if somehow it is all related.
Plus now when anything hurts, twinges the anxiety kicks in cause I wonder what is going to happen next.
Irritable bowel syndrome goes along with migraine. I got abdominal cramps when I was little, long time before I got full blown migraine. On days when I have bad migraine my legs muscles particularly ache and are weak. Also depression goes with it (low serotonin). I can feel depressed all day I have a bad migraine then it lifts with the migraine.
Tinnitus, dizziness, horrendous neckache, burning neuralgia in the back of the head, eyelid drop, red rims round the eyes (permanent black under the eyes), exhaustion, sweating (I tend to go really hot until I take the painkillers, it feels like inflammation), shaky (but I suffer from low blood sugar attacks anyway), weak. Aching behind the legs and knees (anybody else get this?) Stomach problems (they reckon the digestive track slows right down with a migraine). What a list! Just shoot me now
thanks guys i really appreciate it…i wrote to my neuro-otologist so hopefully he let sme know what he thinks
As usual I am a little late in reading the posts and I apologize. Everyone had some great suggestions about the possible “weird” symptoms. I was thinking along the lines of neck tension which is related to the problem you are experiening in your legs, too. This all may stem from blood flow, we know that blood flow is involved in migraine problems, and both our neck and shoulders along with our legs can be affected by poor circulation. I especially like the oatmeal pack suggestion. I use a moist heating pad every night to relieve my tense muscles.
In addition, you may have a problem with your legs due to balance, since you get vertigo you are dealing with dizziness and that affects your balance system, and one of the parts of our vestibular or balance system is our legs. They may be working overtime to compensate for your disorder, resulting in aching muscles there and even in your neck and upper back.
Let us know how you do!
How much nori are you on these days? Has it worked for you much do you think? Have you considered increasing the dose?