This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi Everyone. I'm new on here so hope I'm doing this right. I'm wondering if anyone else gets the same type thing I do. The only way to describe it is it feels like a wave is going through my brain and I'll get one after another. It doesn't hurt - just a weird sensation. It takes a lot out of me and for some reason it is hard to keep my eyes open with they are intense. They can be very disabling. My neuro doesn't know what they are and hadn't heard of them, but a nurse my husband knows said she had seen some MS patients over the years describe the same type thing. Anybody out there get something like this? If so, have they found out what it is or what to do for it? Wishing you all well....Cathy

hi Cathy. welcome to TIMS.

sorry i can't help with your question but i will ask my partner if she feels what you descibe.

i have a question for you. you said it feels like one wave after another. does the timing of waves going thru your brain match the beating of your heart?

when i have a bad pressure headache, each heartbeat causes the pressure (and thus the pain) to be worse. now that i think about it, it could feel like waves. i know its not what you feel but its as close as i can get.

i hope you get some answers

This is something I used to feel when I was younger, in my late teens and early 20s, the sensation has not occurred now for many years. I am in my mid-50s.

You describe it very well, a sensation like a wave or subtle movement of my brain within my head, without pain. In my case, the wave-like sensations were most always disjointed, and never lasted longer than a few seconds.

Back then, I also used to get classic migraines preceded by a visual aura or tingling in my lips or fingers. I now tend to get cluster headaches, with no aura. I take medication that works very well to prevent them.

That was years before I was diagnosed with MS, I have no idea if there was a relation.

The doctors I spoke to about the sensation back then never had any idea what it was. One suggested that it might be a very mild form of seizure.

--Tracy

_________________
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

Thank you Doug and Tracy for your replies.

Tracy mine started out being only a few seconds long and only once or twice a month. I am now getting them much more frequently. My last bout with them lasted 10 days, with waves 7 or 8 hrs each day. I see you have had the liberation treatment - how did it work out for you?

Doug I don't think they match my heart beat - never thought about it actually. I think they are slower than that but next time I have it I will check it out.

Thanks again for your replies. Be well.

Cathy
SPMS
Diagnosed Aug/06

this quote is what i was thinking about when i said matching your heart (and not saying it very good LOL):

My 'waves' went right to left and were associated with very low blood volume - basically not getting enough blood flowing through my veins so that each new beat of my heart was pushing a 'wave' instead of simply helping a steady flow.




everytime i hear things like you posted Cathy it screams CCSVI to me.

Thanks Doug - interesting idea and maybe it does have something to do with the blood flow. Mine tend to go from the back to front but probably doesn't matter which way they go.

I have experienced this a few times. Sometimes it is when I am sitting down, other times when I am walking. I have brought this up to my Neuro. The only thing he could tell me is that it is from the lesions in my brain. He didn't say anything about a mini seizure or anything like that (not to say that isn't true).