• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.


vertigo supersized

I was at first, very dizzy, had trouble balancing. Later, I discovered what I had never known, that vertigo comes in more than one flavor. I had no idea that I could feel as if I were spinning three directions at once, literally in a neurological washing machine. It was constant, nonstop for months. From my bed I thought about death. I knew for a fact I could not sustain life that way. I was way past scared. I was dispassionate about it, as anyone is when in great extremity. I needed it to stop no matter what it took.

Then I found some try-anything-and-get-'em-out-of-here 'cowboy' ER docs who put me on Klonopin. That slowly took the edge off, and righted the world a bit. Over time something must have healed a little as it is seldom that I have true vertigo, now. Mostly dizzy...still on klonopin, thought. And I do an odd thing which is that I automatically hold out my arm, and run my hand along the wall when walking down a hallway..so I don't bump into it, I guess. I would certainly fail a sobriety test.

My story is very long and complex. Most of the things I have found that help me I've found by accident. At one point I did find a doctor into boutique medicine to treat me. He gave me low dose cortef and pharmacy compounded DHEA. That combined with cleocin IVs and oral antib's gave me a very small part of my desire to live back. I was by no means well, but I suffered a great deal less. Doc then dumped all his Medicare clients...I may have told you that. So I became doctorless because it seems no one wants a CFIDS patient without money. Eventually I found a desperate newbie in town who was beginning his practice, he took me on and two years ago dc'd the cortef and the DHEA. I am now back to bedridden and the vertigo is returning though not with a vengeance. It is enough to make me take 'back' streets when I drive and I avoid driving because of the vertigo.

I too am surprised at how few who suffer CFIDS mention vertigo.

Augh..too tired to even find a comma on my keyboard or figure out where this post even ends.



Senior Member
I have also wondered if the fact that many of us (maybe all of us?) have problems with our central nervous system messaging, might contribute to vertigo.

One definition of vertigo is "hallucination of the inner ear". Which means apparently that, since our ears have tons of tiny receptors that pick up information that is sent to the brain to tell us essentially where we are -- standing, lying, upside right or upside down, near that wall, etc. -- if some of the messages are wrong (hallucination aspect) then we are victims of these scrambled messages. End result, we get scrambled too.

It was a relief actually to realize this. Explained why I sometimes felt like I was going to fall down -- though I knew I wasn't -- or why it felt like I was going to hit that wall -- even knowing it was not that close to me -- why it felt like I couldn't make it all the way down the hall when my actual experience was, that I did make it.

Scrambled messages. Misfiring central nervous system. Maybe.:rolleyes:


slightly bedraggled
Hi Jody-- I had the same experience with my chiro's chair. I could not go down on it but would have to climb off and on. He had never seen a patient with that issue but knew the vertigo was real. Then I switched chiros and the new one thought I was being ridiculous (of course, insurance or not, I went back to the first one).

I also have trouble with anyone causing motion, as when a child bounces next to me on my bed or the few times I dared sit in a porch swing. I have a thick enough mattress now that it's not as bad and no more porch swings...but then there's the rest of life.



Killer, Clown, Priestess
Thanks to everyone for talking about this. I agree that it is not discussed freqyently enough.

It first started for me near the end of a period of relative remission when I was able to work part time. At work, I would have to lie down on the floor. When I was driving I would have to pull over and it frequently would trigger a panic attack. I could no longer travel by air. I threw up even on the smoothest flights. I can remember lying on the floor of a physical therapy clinic with the whole world spinning around. I was unable to stand up or leave that place and had to take some sort of benzo med in order to eventually make it home.

Following that period, when my slow descent was suddenly a huge crash, I had trouble lying down on a bed. I needed to be where I could put my hands and arms out and hit solid floor. I still have trouble but wonder if I have not just learned to compensate somehow.



Senior Member
Melbourne, Australia
A degree of Vertigo perhaps?...............and I thought it was my (already diagnosed & on meds) high blood pressure that caused my lightheadedness & dizziness & disorientation.

My cortisol tests & thyroid tests keep coming back normal over & over again, that's for sure.

Often when my GP sees me, he's suspicious of thyroid problems, but the Endocrinologist found nothing with extensive testing in Nov 2006 (except low vitamin D, which I have taken a supplement for, ever since).

I haven't had lots of tests because of suspected CFS.

I've had tests because of the constant high blood pressure, gut symptoms & heart arrythmia. I went through months of episodes every day when I thought I was going to pass out - thought to be "cardiac" problems.

I certainly do remember hanging on to the wall alot so I wouldn't fall over.

But then I had 5 months (or so) of no symptoms whatsoever.

The stress echocardiagram I had set off 13 days of symptoms, but then it all stopped (again).

So frustrating to have symptoms, but by the time I get an appointment with the Dr, I'm much better.

All I can say is, what's the point in going to the Doctor anymore - they rarely find anything wrong. And when they do find something wrong, they put me through a whole lot of tests costing money and the final result is negative.

It's almost like some phantom that invades my body whenever it wants & is invisible whenever it choses.

I cling to the tests that DO show something abnormal because it's the only thing I've got to show I'm not lying or making everything up.

Especially the ECG's that have sent me to the hospital emergency department twice this year. It was symptoms & an abnormal ECG (including long QT stroke & severe chest pain) that sent me to the Cardiologist end March this year. But on the first visit to him, the ECG on that day was completely normal. I was dizzy & falling over every time I bent down to tie my shoe laces, but when I did this for the cardiologist, I was fine.

Once again, the Phantom at work!

I suppose many of us want validation, if nothing else.



Senior Member
Gold Coast Australia
Hi Victoria,
Go read the great book "Solved" by Stephen Langer....in our Gold Coast library if you cant get it down there ...they can send for it here. Chapter in there about FM and low thyroid. He treats all his patients with the old Dr Boda Barnes method , take your temp under arm for 2 mornings before getting out of bed. Should be not under 36.5 degrees celsius. If under he treats with natural thyroid extract. Sometimes he just treats on symptoms alone. Blood tests are not a true indication of thyroid problems....that is becoming well known now...endocrinologists will fight this.

Recently my Doc gave me an article by a visiting endo who did not beleive this rubbish until his wife could not get out of bed after having a child...his theories went in the dust bin and is now a convert to the new old ways of looking at thyroid problems

In the book he claims just so many health problems are caused by not treating the thyroid.

I think we can have normal levels come back but the stimulating hormone that releases it does not work sometimes...like a car full of gas but the ignition wont turn over very well.

Read also Dr. Lowe, Mary Sholom.....gurus in this area. I really recommend the above book.


Senior Member
Melbourne, Australia
Go read the great book "Solved" by Stephen Langer....in our Gold Coast library if you cant get it down there ...they can send for it here. Chapter in there about FM and low thyroid. He treats all his patients with the old Dr Boda Barnes method , take your temp under arm for 2 mornings before getting out of bed. Should be not under 36.5 degrees celsius. If under he treats with natural thyroid extract. Sometimes he just treats on symptoms alone. Blood tests are not a true indication of thyroid problems....that is becoming well known now...endocrinologists will fight this.

Hi Susan,

My GP asks for a thyroid test every quarter when I have my blood sugar, cholesterol & other tests. It always comes back normal (as did the other GP's tests 10 days ago).

In Nov 2006 (at my request, because I'd read that nearly all of FM & CFS sufferers have thyroid imbalance), my regular GP sent me to one of the best Endocrinologists around. She went ahead with a multitude of tests (& thankfully had them "bulkbilled" so I didn't have to pay).

They were all normal except low vitamin D & I queried the below normal pituitary test. She dismissed my query saying "she didn't do that pituitary test for pituitary function". She was so bloody minded as though to say, what right did I have to query her expertise. I also had high blood sugar (classed as pre diabetic) - now under control.

But if you have any test of any kind, and it's well below the normal range, surely there must be a reason? I got so frustrated trying to get an explanation out of this Endocr. for the below normal test.

I'm not medically qualified, but surely a below normal test indicates "something" is amiss.

We had a lengthy discussion on diet, where she told me what I should & shouldn't be eating - which I answered with "I'm already doing all that". I have an excellent diet, probably better than most dietitians.

Anyway, apart from mentioning my heart murmur, I could see that she was not my type of doctor.

I like to discuss & ask questions. Any doctor who is adamant there is nothing wrong with me doesn't deserve my money in my opinion. If there was nothing wrong with me, why do I struggle with the simplest, shortest exercise? Why do I get cognitive problems. Why can't I type a simple email without having to re-read it several times?

And I'm not unfit. I seem to have trouble walking up the simplest slope, but I can walk around on a flat ground level for ages.

Years ago, my Chiropractor said (considering I had a bad back) I was one of the fittest, most flexible patients she saw. My chiro was a fitness fanatic herself & admitted that in those days, I was fitter than her. In fact, while her treatment worked for my back pain & hip pain, I saw her regularly. She was adamant, that I had adrenal stress & some sort of chronic inflammatory colon/bowel problems. At least this fitted in with the eventual IBS diagnosis.

It's like when I was at the local ER department of the hospital with one of my excruciating episodes of pain, their blood tests indicated some sort of chronic inflammatory disease. Whenever I've had blood tests through my GP, the inflammation marker (can't remember what the test is called now) was always normal.

Like I said, I have a phantom which appears & disappears at will.

I pointed out to this Endocrinologist that I was power walking 50km a week for months in 2003/4 (with no visible after effects) & doing about 30 back stretching & toning exercises each morning for many years - about 600 repetitions every morning - now I find it exhausting to do virtually any amount of exercise. Even bending over & cleaning the bath leaves me exhausted. And while I was pretty good for about 2 1/2 years, in recent weeks, I have gone back to exhaustion every day.

I believe in good diet & regular exercise, but if you can't do it, you can't do it.

Read also Dr. Lowe, Mary Sholom.....gurus in this area. I really recommend the above book.

Have read Dr Lowe & Mary Sholom. I agree with alot of what Dr Lowe says. I suspect there is more than just "slow metabolism" as diagnosed by the Gastroenterologist in early 2004 (or Syndrome X as it's commonly called - I have a couple of books on the subject).

My GP has been wonderful over the years referring me where ever I want, but with the lack of test results I was at a dead end, so gave up. Since he was the Staff physician at one of our major hospitals, he seems to have extremely good connections. I have been more that happy with the Neurosurgeon who did my back surgery & the Cardiologists I've seen (so far).

The female GP I saw 2 weeks ago gave me the name of a local GP who nows specialises in CFS - I'm seriously thinking of consulting him & starting all over again.

My deterioration in the last 3-4 weeks is quite obvious & while one can put it down to too much time on the computer, and maybe some MCS issues with the computer & new printer/scanner at home, I have to walk slowly to work now & then it takes 15-20 minutes of remaining very still & not moving at all before I can start work for the day.

And I'm starting to feel exhausted mid afternoon at work again (like back in 2005/6). It seems obvious that if I have to sit still & "pretend" to work for the last hour or so in my office, because I can't think clearly, there is definitely something wrong.

Yep, Susan, I think I will consult that GP I mentioned, but thanks for your advice, I really appreciate it.

Victoria :)

PS For years my temperature was 36.4 (instead of 37) - even my GP agreed that I had a lower than usual temp. Seems to be 37 most of the time now.


The one thing I've found that's helped vertigo and shortness of breath is an electric matress raiser.

It's harder to sleep, but it stops you leaning over on your side and getting vertigo attacks - positional vertigo. And/or laying flat and trigering them this way.
I find the worst vertgio attacks are falling asleep dreaming you're on a boat at sea - and you wake up feeling like you're still on the boat and then all hell breaks loose! :( BPV = Benign paroxysmal positional vertigo (BPPV).

Another things is recognising the warning signs of post exertional vertigo symptoms coming on (orthostatic vertigo), and knowing it should be gone by tommorow if you sit still - but then we tend to ignore this - so then the next day you walk around still (not resting as planned) and BAM you get a full on vertigo episode maybe for days. I call that a 'no blood in my head' vertigo attack that I can usually detect before the actual balance loss occurs. So stop drop and roll... well not roll actually!!! stop and freeze and be extremely patient at having to play statues (on your own) on the sofa.

Lastly is if you're in an attack - keep your head dead level in bed (so look at the wall, not the ceiling) and don't move at all, no walking - nothing. This is exhausting and indeed impossible without a matress raiser that 'props' you up in bed.

Stopping talking to people or looking at them when they talk (uses eyes, eye movements are linked to dizzyness/vertigo) can reduce dizzyness as can distracting yourself and waiting for the hours to tick by. Urinating can trigger balance loss also, so maybe if you're hydrated don't down 10 pints of water during these episodes!

Try and have a back up of someone who can drive (not just the cat), it's impossible to drive a car with vertigo. I tried it and ended up trying to change gear with the fireplace...