HopeSprings

I'm confused. What was the reason for the appointment? Did she diagnose anorexia as in -- starving yourself because of a distorted body image-- or anorexia as in, skinny because you aren't eating due to trying avoid physical symptoms brought on by eating? What kind of outpatient treatment would this be?

I don't know what this symptom is called, but I feel exactly the same. I keep saying "I can't see straight" (which nobody quite understands because I have perfect 20/20 vision) and it is the way you describe. My eyes have been checked over and over, including by 2 neuro-opthamologists, who both concluded it has to be vestibular. Balance problems can make it *feel* like it's your eyes. Is this a new symptom? I am assuming the eye Dr. looked at everything and ruled out any eye disease or disorder? It's the worst ...I know.

Your BP and heart rate are very similar to mine and at the same times of day. My numbers look almost exactly like yours. I also get the strong urge to pee (assume this is what you meant) during the night and arms go dead. So yes, I think this IS all from POTS.

Just curious if laying down helps her with the lightheadedness? Thinking a lot lately about blood flow to the brain.

I had a sleep study done a few years ago. It showed reduced DEEP SLEEP- forget if their was a technical term for this. But the Dr. didn't really follow up with me or offer suggestions (typical unfortunately). I know poor quality sleep is either a partial cause of the symptoms or a result of my dysautonomia. Let us know what happens with your results.

No limp, but like Sarah said I get a heavy legged feeling as well, which does make it very hard to walk. It's a really weird feeling. I also get burning sensations in my feet (really like they are on fire) --usually only at night when laying down. And a big YES to my arms falling asleep in my sleep. I wake up and they are completely dead like you described. Not a good feeling.

Ok I didn't know you had to wait between BP readings. That could explain some funny results I have gotten. How long do you need to wait in between readings?

WOW! This article addresses exactly what I have been wondering and searching for. WHERE did you find it!? I keep wondering if POTS and my unclassified "inner ear condition" are related. Have also wondered about blood flow to the brain while standing because I feel less spacey/dizzy laying down. The study brought ALL these components together. I printed it out and am going to over it line by line, but the part that stands out most is "In addition to the above mentioned autonomic dysfunction in patients with vertigo, their vertebral blood flow was significicantly lower in response to passive tilt up." I don't have (spinning)vertigo, but I'll bet this could also apply to other types of dizziness. Thanks for sharing this.

Welcome! I don't discuss my situation with aquaintances, but when relationships get closer, I feel I have to let the person know that I am NOT OK. I have so many limitations -- it would become quite obvious that things are not quite right. I want the person to be aware of what the problem is, rather than think I am just weird! Most people don't get it or remember anyway, despite my efforts to explain it -- so I just give up. I have one friend whom I have known for 6 years -- I have explained to her on a number of occassions that I am sick, that I am dizzy all the time etc. and she keeps suggesting that once my 2 year old is in school I get a job. Hellllllooooo???? Other people in my life -- close family members I have told repeatedly that I am hypersensitive to perfumes, that once exposed I feel very sick-- do they remember not to wear it around me? --NOOO. So NO, I guess I am doing the opposite of trying to hide it. People are in their own little world -- I think we overestimate how much they think about us, so I guess it doesn't really matter whether we hide it or expose it 'cause they don't really care anyway! As far as trying to lose weight -- I have been trying to lose the same 5 lbs for like 2 years. I think I would have to eat close to nothing to make it happen. I don't think it's POTS related though -- I don't know your age, but for me I think it just gets harder to lose weight as I get older. Good luck with everything --hope you have a good Dr. to work with.

Isn't it so annoying when you get tested and your body doesn't malfunction the way it normally does! You want to be able to SHOW the Dr. what happens on a daily basis and all of a sudden your body decides to cooperate. This happened to me during a tilt test -HR went up by 38 beats, but only rose to 108. When I get up in the morning it can go as high as 120-140 and be 110 just doing minor stuff around the house. Anyway as a result of that test, I was diagnosed with "mild" orthostatic intolerance -- uh, there is nothing "mild" about this. Your BP readings do sound funny -- I'd make sure your monitor is functioning properly. A lot of us do have low BP - I think this is part of POTS. O.H. I believe is when your BP drops 20 or more points upon standing. Hopefully you'll get some more informed responses from people here who know a little more than me. I hope you find a good Dr. who can help you.

I went to see my Neuro-Otologist to re-hash all of my symptoms for one last time (mainly dizziness). She suggested I try steroid nose sprays --when I told her I crash after coming off of steroid nose sprays (get extreme exhaustion, like I have been hit by a truck) she suggested I try Singulair. She said it's a non steroid and may help with inflammation that could be causing Eustachian Tube Dysfunction which could be causing my dizziness. I am SO leary of taking any kind of medication. I seem to have a bad reaction to everything, but feel like I have to try SOMETHING. I most fear neurologic side effects and she said this drug can cause nightmares. Great. She did give me a pediatric dose -- they're chewable! Anyone have experience with this drug? Tell me good and bad. Also, what has been your experience with steroid nose sprays (Nasonex etc.). I don't understand why I feel so bad after discontinuing them. Thanks.

I know. I feel the same way most days. It is hard to accept that we aren't able to do as much as we once did and it gets so frustrating! But we have to come to some level of acceptance and try to manage it from there. Treat yourself gently and do the best you can. There are days when I am feeling just a tiny bit better and it gives me hope, which helps me to continue on. I have two small children and like you, if it weren't for them I think I would be tempted to just give up. Not suicide, but I would probably just lay in bed everyday until a cure was found. They force me to get up, get moving, get out and live. And it's hard -- sometimes REALLY hard just to do the little things to get through a day, but I always get through it. And honestly I can usually find something to laugh at or smile about -- there are always small moments of joy. But I understand we don't want to just "get through it" - we want to live, to enjoy life. The one consolation is at least we aren't alone. It took me YEARS to get a diagnosis and that whole time I felt completely alone, stuck in this weird/debilitating illness that had no name, with most Dr's not believing me and my family & friends baffled and probably thinking it was all in my head. It's just nice to have a place to come and talk with others who know exactly how we feel. I have most of my hope in research. There are many Doctors/scientists working on this and I am really optimistic that they are going to figure it out - hopefully before we're 90! Plus all of us who are constantly searching, reading, researching -- we will eventually figure this out I believe. Sorry I don't have more words of wisdom except to say hang in there, be gentle with yourself and try not to lose all hope. This can't be all there is for us.

I get worse (dizzier) with altitude too and it doesn't have to be all that HIGH either -- just going to the Poconos makes me worse.

Coffee helps me a lot in the morning. It does bring up my heartrate, which I don't like, but it helps a lot with brain fog and just the extreme exhaustion and confusion I feel when I first wake up. Maybe try 1/2 a cup and see how you do. I do 1/2 regular 1/2 decaf and mix them together.

I agree with the advice given -- see a high risk OBGYN with knowledge of POTS and weigh the risks vs. benefits of the medication. I personally don't trust most drugs in pregnancy (or at all for that matter), but if she is gonna pass out without them, I don't know! Maybe if salt loading helps your wife, the extra fluid of pregancy will help and she won't need medication? There are some women with POTS who feel better while pregnant, maybe she will be one of the lucky ones. Another thing I want to mention (I just went through this two years ago) is maybe have her get a consultation with the anesthesiologist if she thinks she may have an epidural. The epidural can cause issues for us. Good luck -- I really hope she has a smooth pregnancy.

Oh my Gosh, I just went through this last month. I started feeling much worse and didn't know why. My heart was pounding more than usual and I was much more dizzy. A week later, cold symptoms started. I had a nasty cold and then just as I was getting better, caught another cold and started my period. I don't understand why the POTS symptoms get so much before/with a cold. It's like the body just completely overreacts. And my period defintely makes POTS worse --usually the first three days are the worst. Anyway it has taken over a month to *start* feeling a little better. So I feel your pain ... and hope this passes quickly for you.

MWise -- Glad the results were negative for Cancer. Did they scan your brain as well? I am interested specifically in brain blood flow, which I think the PET looks at.

I tried Midodrine once and felt dizzier with a fast heart rate. I am guilty of --if a medication causes any problems-- I immediately dump it. I am so sensitive (it seems to everything)and so scared of making things worse. What happened when you took it?

CMRuls -- you are very smart to do it this way. Hope you have an ok time with it.

Can I ask what you are taking it for and why for a few weeks? I would never tell someone not to take their Dr's recommendation, but let me just tell you about my own experience. I was on Klonopin several times a week for about 6 months and became very addicted to it. I had a horrible time trying to get off of it. Every time I tried, I would go into a horrible withdrawal. I finally went off cold turkey (which was a VERY BAD thing to do to) and went into acute withdrawal. It took me years to get rid of the "withdrawal" symptoms and some -even ten years later- never went away. I really hate this class of drugs. I am probably an extreme example of what can happen, but I would just say to you - be careful.

I have been diagnosed with it, but wasn't given any reasonable treatment for it. The Dr. who diagnosed it wanted me to take some powerful sleeping pill (forget the name, but it's the "date rape" drug) -- I said uh, no thanks. He seemed to think the "POTS" (or orthostatic intolerance or dysautonomia) is just a symptom of the larger picture, which is actually CFS. Apparently a lot of people with CFS also have autonomic nervous system symptoms.

I don't know, but when you find out can you please let us know? What did your Dr. say about it? I think it definitely shows more than an MRI. My worst symptoms are cognitive and would love it if there was a test that could pinpoint WHY.

Nunntrio- I had the blood volume test done too and it came back normal. Looking back at medical records I also have always had low blood pressure -- long before having POTS. At the same time, it can't be "normal" to have BP in the 80's or 90's, can it? So maybe there is a relationship --just not sure what it is. The Florinef/Salt/Water recommendation seems to be the first line of treatment recommended by Doctors. They seem to be STUCK on this even when (like in our case) it doesn't really seem to apply. I just keep reading about salt, water, florinef, (ad nauseum)and think why even bother. I think we need blood to move UP (our brains) not out (expanding every blood vessel).

Just wondering for those with low BP, do you feel noticeably worse when your blood pressure is low? My worst symptom is dizziness/brain fog/drunk feelings, but I can't correlate it to low blood pressure. My blood pressure ranges anywhere from 80/40 to 109/76 (highest reading out of 25). There are times I am so spacey and dizzy and think it HAS to be my blood pressure, then I'll check and it's my high normal. I just don't get... is the dizziness in POTS supposed to be due to low BP? And if BP isn't the thing causing the symptoms, then what would be the point of taking medication or doing things (salt/water)that raise it? I may be horribly misinformed. Thanks.

Google "Cardiac Syndrome X" Here's one link: http://heartdisease.about.com/cs/coronarydisease/a/CSX.htm