HopeSprings

Nikki -- I'm sorry, I am stuck in the same boat as you. I do have some positive test results on inner ear tests and they still don't know exactly what the problem is. There seems to be a lot of us out there with vestibular symptoms, that are probably inner ear related, but the science just isn't there to help us yet. The general explanation I have gotten is that there is too much fluid in the inner ear (and one Dr. said there may be leak) which causes the symptoms of dizziness/unbalance. The standard treatment is to follow a low salt diet and possibly take diuretics to reduce the amount of fluid in the body (therefore the inner ear), but this is the OPPOSITE advice as what to do to treat POTS -- add salt and fluid. What a catch 22.

Yup I feel high too.

It's awful, I know. I have a hard time sorting out what part of the dizziness is from the POTS and what is caused by the inner ear disorder. Have you been to a neuro-otologist?

Dizziness is my worst symptom too. It's not a spinning dizzy -- it's an off balance, floaty feeling in my head, hard to focus my eyes, sorta drunk, spacey feeling. It's horrible and constant. Some days are worse than others, but it is always there. I also get the second type of dizziness you mentioned when going from bending to standing or laying to standing -- but it IS different -- that one is more a lightheaded feeling and usally passes. Have you been evaluated by a neuro-otologist? Vertigo could be a symptom of Meniere's or another inner ear disorder.

"There is a Dr. in Dallas that does a trans cranial doppler during a TTT. " Are you near Dallas? Can you get the test done? This is the test I would like. I'll have to research and see if it's available somewhere in my area. I really have found nothing that helps besides laying down and my morning dose of coffee. If only there were a way to push the blood UP.

I find this is the typical Dr. experience. My secondary frustration with this illness is dealing with the Dr's who are supposed to be there to help. Why most of them chose this profession is baffling to me. Sorry you went through this.

Brain fog is my worst symptom too... along with feeling off balance and like I can't see straight. Do you find that laying down helps the brain fog? I do and so conclude that brain blood flow is a part of the problem. I do get that pressure sensation in the back of the head and neck and when I have it, I am feeling really bad in my head, much worse. I have never experienced that sudden sensation of a pressure release/clearing. It does sound like a clue. I took part in some research that looked at blood flow to the brain in POTS patients while laying and standing. I don't know what MY results were because when I asked for them they told me I didn't do this test -- uh, yes I did... they obviously lost my results? So annoying, as this information was critical to me. Anyway, the results of this research did show reduced brain blood flow in POTS patients. I wonder if this test is available outside of a research setting ...available to patients?

I have the same problem -- can't take anything! I usually just stick with Advil -- this at least helps with pain and will maybe reduce some inflammation.

Sounds like it had to do with being suddenly awakened out of a deep sleep. Like everybody else said I also feel very weird when I first wake up -- just really out there, REALLY REALLY tired and sort of a drunk feeling. It takes lots of coffee and about an hour before I start to feel more functional. I know my blood pressure drops very low when I sleep and wonder if this is why. Have you taken your BP when you first wake up? Maybe there is a clue there. Also just wanted to mention my POTS began with episodes of --just as I was falling asleep, a sudden sensation of spinning, nausea, chest pain and racing heart, followed by gasping for air. It is scary when new episodes start to take place-- hopefully this was a one time thing.

So glad you finally got your diagnosis. That must have been maddening dealing with the first guy who was looking for somatization disorder. I got that diagnosis early on and was thoroughly offended! I think these Dr's (especially older male ones) see how young and healthy looking we appear and assume it must be in our heads. I started on my quest for a diagnosis in my mid-twenties (I am now 38) and had a very hard time getting anyone to take me seriously. We don't want to have a disease of course, but getting that diagnosis is so mentally reassuring --to put a name to this thing that causes so much suffering... to understand WHY we have these symptoms. Well I hope now that you are officially diagnosed, there will be someone who can HELP you.

Julie-- I like your method better too! Sue-- Yes, visual symptoms are a HUGE part of my problem. My vision tests fine, but I feel like I can't see straight -- like things are hazy. I also have ear symptoms --tinnitus and clogged feelings, some hearing loss. And like you the more cloggy my ear feels, the more off balance I feel. Airplane rides, driving through hills, mountains all makes it worse. I am also worse when I am in any situation with lots of visual stimuli -- movies, malls, parties, museums etc. It's like a constant spacey, floaty, sorta drunk feeling in my head. It is my worst symptom. It also causes me cognitive problems. I have been confused too as to how much of this sensation is caused by POTS. I do feel somewhat better when I lay down -- so then I think is it because of blood flow to the brain -- POTS? I don't know -- I think for me it may be a combination of both. I do feel if I can solve the ear problem that it may be half the battle. I also wonder if inner ear problems can contribute to POTS (I have said it here many times). There are articles that talk about the relationship between the vestibular system and blood pressure/heart rate control. So that's all I know. I am still on the fence about the test. I am so ridiculously sensitive to anything I put in my body -- I am scared.

Yes, the glycerol would be ingested. I don't know exactly HOW it works, but I guess it's similar to a diuretic -- except according to him it doesn't work systemically, just mostly affects the inner ear. This is hard to believe. The test (in his opinion) can help confirm this inner ear fluid problem. I have also read the test is done to help diagnose Meniere's. The teatment for this condition would be either a diuretic (which is not a viable option for me) or there is a possible surgery. The surgery is the thing I might consider.

I don't know if anyone can help me on this one. I saw a neuro-otologist to see about my dizziness/balance issues. He thinks I may have a peri-lymph fistula -- a tear near the inner ear which allows fluid to seep ...into the inner ear? From what I have read it's a pretty controversial diagnosis with no real good test to confirm it. I have previously been diagnosed with "borderline meniere's" and another Dr. called it "hydrops." This Dr. said I do not have Meniere's. It's all the same premise having to do with too much fluid in the inner ear. I don't really get it -- excuse my poor explanation. Anyway this new Dr. wants to do a test where they give me a diuretic -- which reduces fluid in the inner ear and then do hearing/inner ear tests at 1 hour intervals over the the course of three hours. Somehow this can help with diagnosis. When I told him about the POTS he said maybe we shouldn't do the diuretic, but he can use Gylcerin (Glycerol) instead. Glycerol he said doesn't dehydrate the whole body, but focuses more on the inner ear. Then I read the possible side of effects of Glycerin -- nausea, dizziness, headache -- uhhh, no thanks? Plus it says Glycerol is a derivitive of alcohol? I can't even take a sip of alcohol without becoming symptomatic. But I don't know if it's "alcohol" in that sense. However, the diuretic "Lasix" can have a slew of side effects as well. So I don't know what to do. Do I go forward with the test and which do I take ...the diuretic or the Glycerin? I had a blood volume test done and it did NOT show low blood volume, so is it a big deal for me to lose water? -- I know this is a theory with POTS -- but is it JUST a theory? I felt so confused after I left his office and feel so hopeless. I feel like I just keep running into brick walls. I would appreciate any input. Thanks.

Maybe you're getting sick? I just went through this. About a week ago all of a sudden the dizziness was through the roof, heart going crazy. I had no idea why-- three days later cold symptoms appeared. I have had a nasty cold since Thursday. POTS knew before I did. Maybe something is brewing?

How does one determine if they have "sphlanic pooling" ? I feel this may be an issue for me because I can FEEL IT when I get out of bed in the morning -- if I sort of squeeze around my waist -- it helps. Also, I get very dizzy after eating. Just wondering though if there is a test to prove this? thanks

Oh my goodness, what a predicament. Hard to know whom to believe right? I have neck issues as well. I have two herniated discs, one at C5/6 which "indents the left thecal sac and contacts the cord and exiting nerve root." I have definite weakness in the left arm due to this. I was scared when I heard these results-- what, it's pushing on my spinal cord?? I saw three neuro-surgoens -- one said "YOU NEED SURGERY --look, look at the MRI-- it's pushing in right there." Two others said I did not need surgery and they seemed confident about it. I decided not to do it. It still scares me -- is it possible that if I turn the wrong way or fall or something that I can become paralyzed?? It's very difficult to make a decision when you have conflicting Dr. opinions. If I were you I'd get a couple more opinions.

Caterpilly -- we have so much in common and have gone down the same Dr. roads. I currently have two pending appointments, one with a neuro-opthamologist and one with a neuro-otologist. I agree "neuro" is the way to go. Please let me know if you learn anything new. I am especailly interested in the MRI focusing on the inner ear because I was told the inner ear cannot be SEEN except at autopsy! Please please keep me posted. Oh by the way, I tried the Valtrex because there is a theory that the herpes virus may cause Menieres -- didn't work for me, but others have been helped by it. Naomi

Oh here's another more concrete one: http://www.ncbi.nlm.nih.gov/pubmed/9674521

I am also super sensitive to any sort of artificial smells like perfumes, cleaners etc. They trigger my symptoms really badly. After doing a little searching online, yes there is a direct relationship between the vestibular and autonomic nervous systems, but there hasn't been much research done on it to conclude anything. (that I could find anyway) But here's an abstract that kind of talks about what I am thinking. I e-mailed the researcher... can't hurt to just look into it. http://www.ncbi.nlm.nih.gov/pubmed/9416585

I was responding to a post about ears and talking about the vestibular system and decided to make this topic its own post. I have noticed A LOT of people here have ear problems and the type of dizziness and other symptoms that go along with vestibular disorders. I have read (not in much detail because I find reading difficult) that there is a relationship between the autonomic and vestibular systems. Is it possible that we have an inner ear disorder that is causing the "POTS" ? Hey, there are a lot of theories... I don't think we've explored this one yet? Any thoughts would be appreciated.

I have ear problems as well. I have the sensation of fullness/pressure in my ears constantly. And the worse the "cloggy" feeling is, usually the more dizzy/spacey I feel. I posted about ears a long time ago and got a ton of "me too" responses. It seems to come up a lot here. So many of us have ear, as well as vestibular symptoms. I have mentioned before that there is a relationship between the vestibular and autonomic systems (heart rate/BP etc.)and have often wondered if a damaged vestibular system is sending the wrong signals to our autonomic nervous systems (or vice versa?). I made an appointment today to see a neuro-otologist -- a road I have been down before -- but he is supposedly very good (we'll see). If I were you I would check with another ENT -- can't hurt.

Just wanted to add a "me too" to this post. I also noticed around 4-5pm not only am I more tired, but more dizzy/spaced out and I get really cold. I start my day feeling hot when I wake up, heart racing and HOT. As the day goes on I get colder and colder, until late evening, and then things seem to even out again. It's the same roller coaster ride everyday.

What a coincidence, I was just discussing this with my husband tonight. I used to have really nice thick hair. Ever since becoming ill 13 years ago my hair has just gotten thinner and thinner. I am on no medication, so I think it's just somehow part of this disease. Not a pretty side effect of POTS!

If this can happen at The MAYO CLINIC -- (one of the most renowned treatment facilities in the U.S.) I am really disheartened! 126 is not a normal heartrate. Anything above 100 is tachycardic right? And if he started (at 80 for example) he'd certainly meet the criteria for POTS -- not that the criteria for POTS is even adequately defined in my opinion. Glad you are moving on to a better Dr.!

Sue: The radiologist said it wasn't enough to qualify as Nutcracker Syndrome and the vascular Dr. thought nothing of it either. Do you really think I should pursue this further?