New problem: Vertigo

[Nielk]

I have a new symptom. I don't know if it has anything to do with CFS. It's vertigo. I get very dizzy with any movement of my head.
When I look down, the everything starts twirling.
Does anyone have experience with this? Any advice of how to get rid of it?It just came on out of the blue.

 

[Merry]

Hi, Nielk. Sorry to hear that you have a new symptom to cope with.

Yes, I've had vertigo from time to time. Fortunately a minor symptom (bothered me most in the 90s). It has come and gone, and all I've done is wait for it to be replaced by another symptom.

If I recall correctly, vertigo has been a major problem for Laura Hillenbrand.

Good luck.

 

[Nielk]

Hi, Nielk. Sorry to hear that you have a new symptom to cope with.

Yes, I've had vertigo from time to time. Fortunately a minor symptom (bothered me most in the 90s). It has come and gone, and all I've done is wait for it to be replaced by another symptom.

If I recall correctly, vertigo has been a major problem for Laura Hillenbrand.

Good luck.

Thanks Merry for your reply. Sorry to hear you also had to cope with this. I'm happy to hear it's gone now.

 

[Sushi]

I have a new symptom. I don't know if it has anything to do with CFS. It's vertigo. I get very dizzy with any movement of my head.

I've had acute attacks of vertigo twice and I do think it is associated with this disease. Each time it lasted about a week and both times were when I was either on a heavy detox regime or subjected to outside toxicity--last time it was smoke from forest fires.

It just went away and I never discovered anything that helped it.

Hope yours goes soon.
Sushi

 

[maryb]

Neilk I suffer from this too, In my case I suspected its when the EBV virus is activated - I had tests after a couple of attacks and it showed this to be so. Unfortunately my last severe attack has left with an ongoing milder problem which is a bind on a daily basis, whilst not as debilitating its an absolute pain. On a postive note for you, I have completely recovered from them in the past.

 

[Sallysblooms]

Make sure your B12 level is good. I stopped eating red meat for a few years and boy did I pay for it. My levels will nill! I was living with vertigo daily. That is something easy to look at. Blood flow also can be looked at. I also had problems years before with a rare death of my vestibular nerve. I had surgery for that, that is very rare. Sinus, colds, ear infections can cause it. There are many reasons but starting with the easy fix is good.

There are meds to help also. Good luck, that is NOT fun, very scary and awful.

 

[anniekim]

Sorry to hear you've got this new symptom. My mum who also has m.e has bouts of it, thankfully it comes and goes for her

Sallyblooms, when you say 'blood flow can be looked at'. May I ask how? Is there testing? Many thanks

 

[Sallysblooms]

I am sure there are tests for that but I guess I meant if you have POTS or OI, that could be the lack of oxygen. Blood doesn't stay in the brain, pools with gravity. Lots of people with POTS have vertigo and of course dizziness and lightheadedness. Just a thought. Trying to give you some ideas. I almost didn't want to even look at the post, it brings back memories when I had it all the time. I hate to hear when people have this problem.

 

[Nielk]

Thanks everyone for your reply. I never had this before, so it's pretty scary. Everyone says that it just goes away. That is good to hear. So far, I have had it for 10 days and it's gotten a little better. I was given Alevert which helps a little. I am kind of on a detox regimen, so what Sushi says rings true. Sally says there is a connection to B12 defficiency which might also be true for me. I stopped taking it a few months ago but am back on it now.
I guess as long as I know that this will not last forever, it's easier to manage.
Thank you for all the replies

 

[alice1]

i also have had this vertigo for the last 2 days and haven't experienced it before so it's great to read it will go away at some point.i haven't been doing anything different so i wasn't sure what to do..time seems to be the answer.
feel better nielk.

 

[Nielk]

i also have had this vertigo for the last 2 days and haven't experienced it before so it's great to read it will go away at some point.i haven't been doing anything different so i wasn't sure what to do..time seems to be the answer.
feel better nielk.

Thanks Alice, you too!

 

[taniaaust1]

I had a bout of it years ago which left me on the floor holding myself up just to be able to sit and about to throw up. Fortunately it left as fast as it came in my case. I have no idea at all what set it off. It was scary (room was spinning so fast.. I felt like I was on a fun fair ride).

 

[Nielk]

Yes, it is very scary and jst came on suddenly. No warning for spinning rooms. left me on the floor fainting. It's gotten better, but still feel dizzy two seekd later.
I found ways to minimize the effects by not taking sudden movements and not turning my head or looking down. Hope it disappears soon!

 

[Parismountain]

It's weird to preface a post like this but if you have insurance I'd check into possibly getting a sleep study done. I had that same vertigo dizzy move your head and swim feeling and my doc and I chased it down. Thought it was a deep seated ear infection to heart trouble and then low and behold I took a sleep study and I was in severe apnea in my REM sleep. I effectively wasn't getting any REM sleep due to waking up to breathe when my air passage closed down. Got rid of the dizziness after about three days on the CPAP machine.

 

[November Girl]

Like others, my experience has been that it comes and goes, mostly for no reason that I can tell. On a humorous note, I did once see an ENT for this. He told me it sometimes helps to cut back on drinking. I told him that I only had a glass of wine a few times a year. He looked at me strangely, then laughed. He meant liquids in general, not alcoholic beverages. Obviously, excess fluid in the body isn't a problem for us.

 

[hurtingallthetimet]

i get dizzy alot and very off balance...my doctor had my to stand and close eyes and i was wobbly and falling down...i was also diangnosed with vertigo after becoming ill...i was told the dizzy from from the fibro/cfs....

i was given antivert i think the generic...it helped some....at worse i was nausea and throwing up and room spining...but mostly thankfuly it is just dizzy...off balance and falling...and disoriented...i take several medications and try to keep the anitvert for only when so bad throwing up and room moving to try to save money... i hate the dizzness and tilting to side etc...i know i probably look drunk when im out but i never drink a drop...

my hubby had veritgo and it was from his ears and he also took medications and felt better.. hope you feel better

 

[Nielk]

i get dizzy alot and very off balance...my doctor had my to stand and close eyes and i was wobbly and falling down...i was also diangnosed with vertigo after becoming ill...i was told the dizzy from from the fibro/cfs....

i was given antivert i think the generic...it helped some....at worse i was nausea and throwing up and room spining...but mostly thankfuly it is just dizzy...off balance and falling...and disoriented...i take several medications and try to keep the anitvert for only when so bad throwing up and room moving to try to save money... i hate the dizzness and tilting to side etc...i know i probably look drunk when im out but i never drink a drop...

my hubby had veritgo and it was from his ears and he also took medications and felt better.. hope you feel better

Thanks,
I feel a little better. It seems like many people have this problem off and on. How was your husband diagnozed that it was an ear problem? Did he go for specialized testing?

 

[Freddd]

I have a new symptom. I don't know if it has anything to do with CFS. It's vertigo. I get very dizzy with any movement of my head.
When I look down, the everything starts twirling.
Does anyone have experience with this? Any advice of how to get rid of it?It just came on out of the blue.

Hi Nielk,

9 years ago I used to have vertigo for hours at a time. I was quite ataxic too. Jarrow methylb12 at a suitable dose, ttitrate up from 1mg to 25mg daily sublingual held for 45-120 minutes each tablet ot grouo iof tablets. Plus adenosylb12 and Metafolin. See the active b12 basics. Mine went away rapidly. It took about 7 years to get rid of the ataxia.

 

[Mij]

My onset was severe vertigo, more of a postional type vertigo. I have to be very careful not to move my head too quickly from side to side or up and down. I tilt my head up a little when I sleep.

I had a brain stem auditory test and some other test where they pour cool water in your ears and leave you in the dark to count backwards from 100 by yourself while your head is spinning around. What a scary trip that is.

My problem was eventually diagnosed as viral. It comes and goes over the years so I no longer panic when it happens, it's usually worse in the morning.

 

[Nielk]

Thank you everyone for your great advice here.
I never paid attention to this problem before, but, now that I have it, I keep hearing from more and more people who suffer from this problem and it seems to come and go for many.
It's strange as to the cause of it. It might be an inner ear problem. A lack of vitamin B12. It might be a virus. It seems hard to know which one is the culprit. Someone also mentioned excess water retention?
I started with the sublingual B12 a week ago, so I'm hoping that will help. It definitely comes and goes. I thought I was getting better and now it's getting worse.
Definitely just keeping the face straight with no movements helps. In addition sleeping on more pillows also helps. When the doctor checked my eyes by asking me to follow a light, he said my eyes were wobbly but, the good news is that they were each equally wobbly. Not sure what that means.
Anyway, thanks to all