HopeSprings

Mine shoots up while drinking too - don't know if this also happens to normal people.

Thanks Diamond, that was kind of my thinking, but I wasn't sure.

Diabeticgonewild - maybe you can answer this question. A neurologist I saw recently who specializes in neuropathy wants me to have a several hour glucose tolerance test to look for diabetes. I had this test done years ago and it showed the glucose didn't really rise, stayed lowish/normal, but on a flat line over the hours. I've had SO many tests done over the years, I'm thinking if blood sugar was an issue, something would have shown by now. I have occasional low blood glucose, but have never seen a high reading and I've had the A1C test which is always normal. She is insisting the GTT is the best test for diabetes. Is that correct? The drink makes me dizzy and I don't really want to do it if she's wrong.

So in reading a little about this, sounds like some autonomic testing can give clues if blood tests are negative. There is a sero-negative AAG. I would imagine finding a Dr. to diagnose that would be pretty tough though. Soskis- a heart rate in the 20's? I can't imagine how bad that would feel. Is there treatment like IVIG or something for this?

This is what I've wondered.. if POTS is just the beginning sometimes.

:D So happy for you Katie! Expect a PM.

AAG is Autoimmune autonomic ganglionopathy http://www.ncbi.nlm.nih.gov/pubmed/19349706 Do those of you who have AAG also have postural tachycardia? Or orthostatic hypotension?

I was thinking along the same lines as Peace. Seems they're saying her jugular vein was actually blocked?

Oh wow, the Daily News is one of the top newspapers in New York. This is so great! I have a question - is the content of online newspapers the same as the paper version? Meaning if I go buy a copy of the Daily News will this POTS article be in it?

Yup? same question.

I tested negative for the antibodies (forget the test name) for AAG so I don't think it's that. I considered the possibility of dry mouth because my eyes are so dry it would make sense, but it feels more like the muscles don't know what to do. I'm just not sure? Sorry this is such an issue for you, Soskis - it's really unsettling to say the least.

Lieze! I have often thought of you and wondered how you were doing. My hearing is in 2 weeks too and I also worry about trying to convey verbally what this is like. I typed it all out in advance and my attorney submitted it to the hearing office so I'm hoping the judge will refer to that. I think just the act of writing it all down has also helped me to organize my thoughts and the attorney said it's often easier to remember something you have written. I think that's true, especially when there are cognitive/memory issues as in our situation. Glad the POTS is better, but sorry to hear you're still struggling otherwise. Good luck with your hearing and please keep us posted on you. ~~~Good luck KatyBug!!!~~~~

Or is my ANS just dumb? I'm having trouble swallowing. I had a few episodes last summer, but now it's happening almost every time I eat. I can chew and push food to back of my tongue fine, but from there the natural next step to swallow isn't happening. I'm suddenly conscious of this effort and have to mentally prepare to get it down. I feel like I'm going to choke. I told the neurologist when I saw him last month and he asked me if I actually choke and I said no, because I'm chewing my food to death, but then we started talking about other things and never got back to this. It's scaring me - and thoughts of other (scarier) diseases are creeping in. I'm hoping it's one of those symptoms that comes for a little while and then goes away. Anyone else have this and is it all the time or does it come and go etc.?

Carrie - I like what you posted by Dr. Fogoros. And it's true because I do feel somewhat traumatized by the whole experience - but I am trying to channel my resentment into positive action. One of the co-authors here is a Professor who teaches physicians assistants. That's not good. You must be sensitive to this since you are also an educator. I understand the frustration, but I do think as a patient community we can affect change... or at least try.

The thing I don't understand is it appears this patient was handled appropriately. No mention of underlying psychological problems, the right tests were done and significant abnormalities were found, but they still feel the need to mention anxiety and stress in the article. What really bothers me is that this was written by women. Some of my worst experiences while trying to get diagnosed was with female Doctors. Several years into my symptoms I switched to an all female practice. The Dr. tried at first to figure it out, but after a while when tests kept coming back negative she told me I might want to see a psychologist. She had also sent me to an endocrinologist and I only recently learned (while collecting records for my SSDI claim) that the endocrinologist wrote a letter to the PCP stating that she felt my primary problem was "mood." It was while seeing this group of female doctors that I had my first heart, adrenaline and breathing episodes. I went to see them, they did an EKG, and told me I was fine. The episodes persisted so I went to ER. The ER doctor (without my knowledge) called the PCP who informed him not to test me for anything because she felt my problem was psychological, not physical. I did not realize the extent of this until I recently when I read my ER hospital records. How dare she? She is not a licensed psychologist qualified to make that assessment and had no right to direct that the ER Doctor. In fact I had already seen a psychologist who gave me a clean bill of mental health and recommended a neurologist. Needless to say those Doctors got a letter and brochure (you understand if you've been following our Dr. education campaign). I found contact info for one of the authors of the article above and will send out an information packet. I also have an e-mail for one if anyone is interested in sending a polite, informative e-mail. Please PM me if interested.

Saw this one posted on a CFS site. Am I being overly sensitive or does this irritate you too? A lot of the information is really good and then they go and blow it. I feel like e-mailing the authors. Thoughts? http://journals.lww.com/jaapa/Fulltext/2013/05000/A_46_year_old_woman_with_postural_orthostatic.6.aspx "TEACHING POINTS - Postural orthostatic tachycardia syndrome typically affects women between the ages of 20 and 40 years who are experiencing anxiety or underlying stress." "A psychogenic feature has also been suggested for the condition. Researchers at the Mayo Clinic attempting to differentiate a psychological etiology as opposed to a physiologic etiology for deconditioning POTS conducted a study involving 14 POTS patients. In order to replicate the physiologic symptoms of POTS, lower‐body negative pressure (LBNP) was applied to participants in one group to cause peripheral pooling of blood in the legs and decrease central blood volume. The other group of patients was administered a placebo‐type LBNP and exposed to mental stressors. Patients stimulated with LBNP developed tachycardia whereas those who received placebo LBNP and mental stressors did not.7 Although this study helps to substantiate deconditioning POTS as a physiologic process, exaggerated somatic hypervigilance was confirmed with psychological testing in these patients,7 thereby reinforcing a commonly seen symptom in the literature."

Also I wish they would do a really good long term study on prognosis. Do we heal, stay the same, or get worse over the years.

I would really like to understand why so many of us have vestibular issues and how it's related to POTS and also, why the severe cognitive and memory problems at our young age.

I have a thought. I don't know if you want to go this route, but in South Florida there is Dr. Nancy Klimas who treats and researches Chronic Fatigue Syndrome. She knows about POTS because a lot of CFS people also have POTS. I can't guarantee that you won't walk out with a CFS diagnosis, however - lol. Especially since you say you feel like you have the flu. Anyway, she seems really nice and smart and if she wasn't so far away, I would love to see her myself. She seems like the type who would be open to testing for different things, looking for underlying illnesses etc. If that other Dr. doesn't work out, maybe it's something to look into. http://www.nova.edu/nim/

Oooo, this is great - POTS coverage in a popular women's magazine! How exciting! Only thing I didn't like... she was getting IVIG and still developed POTS? I was kind of hoping IVIG would be a good treatment for us.

Yes, constant ear problems - tinnitus, clogged feeling, pressure, hearing loss and the thing you described, as well where it feels like a pressure change and then loud tinnitus (in my non-tinnitus ear). I've asked about this on here before and lots of people with POTS seem to have ear issues.

I have no idea how I get through this. LOL. It is sort of normal to me because I've been sick for so many years, but I've never come to a place of acceptance. I just push through and do the best I can. Those better days help keep me going, allow me to rejuvenate and then push on. If everyday was like one of my worst days... I don't know what I would do. I think the thing that helps me most (mentally) is to follow the research, to know that they are working on it and just hope answers will come soon.

I know what you mean. I don't think I have flares either. I feel unwell everyday, with pretty much the same symptoms. Some days or weeks are worse than others and some days are a little better than others, but I'm never symptom free and doing well and then suddenly have a "flare." I don't know if the really bad days can be considered a flare? I think there are people who do quite a bit better for a while and then get knocked down - which must be really frustrating. And you are not a lazy complainer - you don't feel well and are expressing that which is what we're here for.

Because my understanding is an EMG can potentially diagnose large fiber neuropathy. There may be other reasons for diminished reflexes, but this is just one cause I recently read about.

I was reading about the difference between large and small fiber neuropathy and learned that loss of reflex can be seen in large fiber neuropathy. Have you had an EMG?