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
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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.
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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.
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 in advance Rblain67
I'm going back a long way here to bring this up but I had similar attacks before I was diagnosed. At the same time I also felt I moved more slowly than I should have and was more tired than I should have been. It would not last long and then seem to resolve itself. I later found problems looking at groups of people that I was walking towards- they appeared to shudder. I thought I was a bit mental and must have developed a dislike of crowds. It was my eyeballs moving at different speeds. The reality was I wasn't diagnosed and had no strategy to avoid slowly declining.
What you're experiencing might be just a little warning that you should start looking for coincident symptoms like fatigue and looking at strategies to improve your health.
There is no end of ideas about MS attacks and how to manage them.
My ideas are here - http://www.thisisms.com/forum/regimens- ... 24019.html so I wont repeat them.
If this is your only symptom, then with benefit of two decades experiences I would do the following-
1) always go to bed at the same time even if you're not tired (you can read)
2) Take at least 300mg of Coenzyme Q10 before bed
3) Consider reading a lot more about the sort of stuff I and others write about as you will need to learn the language (gets easier)
4) Review the usefulness of the medications you take
5) Consider what other people have found useful
6) Ask a forum like this a lot of questions
These sensations were almost constant for a couple of years, from 2010 to 2013. At the time, I was taking care of my terminally ill mother, had just been laid off from the position I had held for ten years and had no health insurance to even consider going to my neurologist who had performed trigemental neuralsia surgery back in 2000.
The waves would wake me up from sleep and were like an ocean inside of my head. I really hadn't considered calling them waves until I read your post. I thought of them as someone lightly caressing the sides of my head over and over again. Scared me, but did not hurt.
If you find out what it is (obviously nerves) please comment and I will check back. Just wanted you to know that you are not alone.
They can just come on at any time and (I think) go off at any time.
I've had them since a kid and just got used to them been there.
They don't wake me up like one of the other post said.
Yes I get them all over my legs,arms,body and head, like waves swishing from side to side and up and down all over me. Never been to sought help as I've just got used to them, but I now know that this isn't normal.
Any help or advice would be greatly appreciated.
Thanks in advance.
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
I'm sure you've found an answer to your question by now, but thought it might be useful to reply for others who might come across this thread.
I've been living with multiple sclerosis for over a decade now. One of the strange annoyances I experience is exactly what you're describing, but throughout my entire body. A wavelike pulsation feeling that is hard to explain so others can understand. The best way I've come up with is to imagine the feeling a guitar string would have when it is plucked. Now slow the string down to the point where you can see the vibration of the string oscillating back and forth. Now imagine you're the string and have the ability to feel the oscillating. That is the feeling I get and what I believe you're trying to find an explanation for yourself.
I have no idea why multiple sclerosis activity presents itself in this manner. I only know that it comes and goes from time to time. No reason why. No warning. Eventually it goes away. Sometimes it can last a long time. But luckily it's possible to function even though this bizarre feeling is happening.
The crazy thing for me is that no one will ever know it's happening as they're walking by or talking to you. It's a strange concept in that respect. And it's very annoying when you need to explain that something is wrong to someone and their response is, "oh you look fine to me."
Well I hope this post helps someone out there understand what is going on inside their body. If you're reading this and are saying to yourself this sounds like what you're experiencing, then look for a Multiple Sclerosis specialist. The MS Society can be a good reference for help.
Hope you're alright Cathy.
Yesterday I had THE MOST terrifying experience!!!
I was sitting down legs up on my chaise and looked at my cell all of a sudden this warm (non painful) wave came over my head and it was instant and threw me so off kilter I wasnt sure what was happening I felt like I wasnt there in my head and instantly felt like I was going to pass out. Everything seemed to move in slow motion and everything was not registering with me as my daughter was asking me something.
It almost felt like when youre given a high dose of pain meds in hospital.
I am NOT on any meds of any kind btw.....but this/it threw me for such a loop I couldn't move or speak to my daughter or call to my mother for help. I am so afraid of this whatever it is.....it was a horrible feeling like I was not in my body.
Could someone please help??? My father his brother and 28 others in our family have/had MS.....I say had as my father and his brother both passed from issues (neurological, stroke) associated with their MS. I am on the MS clinic wait list to see someone after my MRI showed 17-18 lesions. I am very afraid.
I have no one left to talk to about this as my dad passed last year and his brother at my age my other family members cant help me either.
I dont know my fathers side of the family who carry the gene.....and the ones I did know have passed on. I am a single mom who lost her fiance to cancer a few years ago and am so so shaken and terrified I do not want to leave my daughter without a parent. Please help if you can Im feeling quite alone with everything!!
I experienced a very similar thing. It was a panic attack. Please read this: http://www.thisisms.com/forum/introduct ... ml#p249455
Get well soon, visit a psychiatrist. You are much stronger than you think...
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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