Wave-like symptoms in head...

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Wave-like symptoms in head...

Postby cathylt » Sun Mar 11, 2012 1:31 pm

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 :-D
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Re: Wave-like symptoms in head...

Postby DougL » Mon Mar 12, 2012 3:54 am

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
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Re: Wave-like symptoms in head...

Postby Quest56 » Mon Mar 12, 2012 8:34 am

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.

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Re: Wave-like symptoms in head...

Postby cathylt » Mon Mar 12, 2012 8:48 am

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.

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Re: Wave-like symptoms in head...

Postby DougL » Mon Mar 12, 2012 9:04 am

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.
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Re: Wave-like symptoms in head...

Postby cathylt » Mon Mar 12, 2012 9:16 am

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.
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Re: Wave-like symptoms in head...

Postby littlered13 » Mon Jun 11, 2012 8:02 pm

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).
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Re: Wave-like symptoms in head...

Postby rblaine67 » Sat Sep 12, 2015 1:03 pm

Hello, my name is Romona, and this is the first time I have felt this strange wave like sensation in my head going ffrom ear to ear with tense pressure as well, which makes you feel out of sorts, I have been trying to explain it, but it is difficult, I told my husband it feels like my equilibrium is off, when it happens all I can do is close my eyes and hold my head until it's over, there's no specific time when it happens I can be walking, sitting or even laying down resting. When I stand up and I'm walking around I'm dizzy and feel off balanced, and yes I am nauseated, this is something new that I have never experienced and I went to the E.R last night, they say it's migraines, but it's so very different from any migraine I have ever had, and I have been having them since I was a child and I'm in my 40's now, so this is a little scary, so if someone has any information please advise.

Thanks in advance Rblain67
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Re: Wave-like symptoms in head...

Postby Scott1 » Sun Sep 13, 2015 3:22 am


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 - regimens-f22/topic24019.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

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Re: Wave-like symptoms in head...

Postby Joann » Fri Oct 28, 2016 8:58 pm

Hi Cathy, I was just diagnosed with dementia two weeks ago, actually Rapid Progressive Dementia. I am attempting to figure out how, when and where I got this disease as I am only 64 and the MRI reflects my brain in the same condition as an 85 and up senior. I thought I would see if the wave-like sensations I experience, only once in a while now but a few years ago it was constant, has anything to do with the dementia.

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.
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Re: Wave-like symptoms in head...

Postby Noon » Wed Mar 08, 2017 5:35 am

Hi Cathy, just read your post and I can relate to what you're experiencing but I don't just get them in my head I get them all over me like wave feelings.
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.
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Re: Wave-like symptoms in head...

Postby jimmylegs » Wed Mar 08, 2017 7:32 am

hi noon, welcome to TiMS. cathy has not posted since 2012 so you may not receive a response from that particular user. you can see a pattern above showing more recent activity on this topic aligned with the day a new member joins. still, currently active readers may be able to relate.
take control of your own health
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!
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Re: Wave-like symptoms in head...

Postby mslife » Sun Jun 18, 2017 4:37 am

Hi Cathy,

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.
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Re: Wave-like symptoms in head...

Postby Pastryqueen80 » Sun Sep 17, 2017 12:42 am

I am 36 and being investigated for MS or possibly Systemic Lupus.

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!!

Thank you
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Re: Wave-like symptoms in head...

Postby Zyklon » Sun Sep 17, 2017 1:13 pm

Hey you are not alone.

I experienced a very similar thing. It was a panic attack. Please read this: introductions-f20/topic28969-150.html#p249455

Get well soon, visit a psychiatrist. You are much stronger than you think...
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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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