futurehope

I get something similar if I smell some perfumes or hairspray. My throat feels like it instantaneously closes up and I won't be able to breathe. I believe I have overreactive airways (or something that sounds like that), because they mentioned that during a pulmonary function test. For me, I can quickly overcome the reaction by moving away from the provocation and breathing pollutant-free air. Also, sipping water stops the coughing. How long does a spell last for you? Have you since gotten off of the beta blocker that has started all this? I find it interesting that the benedryl helps you, but the tranquilizer doesn't. As for swallowing, and liquids in particular, I remember another poster on here years back who went to a very specialized doctor at NIH who deals with swallowing difficulties both diagnosing and helping. I also remember him saying that being on tranquilizers long-term affected his swallowing. In your case, I do not understand if your swallowing difficulty is only during a "spell" or any time? Have you found anything that can bring an attack to a halt? One more thing, have you had any back or neck injuries that may have affected the nerves in the area? I hope you get some answers.

The mechanism you are describing there sounds more like normal flow POTS and is pretty similar to my own situation. Low Flow POTS is characterised by a constant state of vasoconstriction. This is caused by reduced nitric oxide bioavailability results in reduced blood flow prettymuch throughout the body - in particular the skin. The hyperadrenergic state is not specific to this or any type of POTS. Pooling in Low Flow POTS is not specific to a particular bodily location, but is apparent to some extent in the legs, pelvis, and abdomin. The good news with this is that its possibly an easier for of POTS to treat although so far its characterisation is limited to the research body that described it. Low Flow POTS has a lot similar to congestive heart failure - both exhibit elevated angiotensin II levels which predispose to increased oxidisive stress. Check out Dr Stewart's website for detailed information on this type of POTS including recent work on the reason there is exercise intolerance in this type of POTS (although it is also apparent in Normal Flow POTS). Normal Flow POTS on the other hand have pooling prettymuch exclusive to the stomach region. These guys have excessive vasoconstriction of their hands (raynauds to a degree) when standing because of the hyperadrenergic response to this blood pooling in their stomach. The hyper. constricts the hands and feet and increases heart rate, BP, etc to try and maintain blood flow to the heart and carotid arteries. if you seem to always have vasoconstriction then you might wonder whether you have Low Flow POTS - if you notice that this symptom seems to occur only under orthostatic stress then you might want to look at Normal Flow POTS (stomach pooling only). You can to some degree try to work out where you pool through visual observation or measurements of your calf, etc at the start and after standing but its a bit of guesswork using this method. Anyway - my point... compression of the legs wont help if you dont have pooling there - infact if you have vasoconstriction there already then it wont do anything. It depends where you pool at the end of the day! (or even if you do) Rama, I appreciate the fact that you can wade through the research and then rewrite the findings so I can understand them. I am going to bring this writeup of low, normal, high flow POTS to my doctor and see what he thinks I am. Thanks for wading through the medical terminology and making it easier to understand. With the info you have learned so far, have you found something to make yourself feel better on a consistant basis? All the characterization is useful to the extent that we can improve our situations. Thanks again.

I've had it done. All I remember is that they took several vials of blood but I guess it was over a period of time. Sorry, it was several years ago.

Great! Thanks for sharing. Would you mind telling where you got yours and what brand? How do they "close" around your middle? Is it velcro, hooks or what? Thanks in advance.

I absolutely think so. I think the adrenal malfunctioning could definitely be a result of ANS malfunction, though, not always. And while we're on the subject, who knows what other system is radically altered because our ANS malfunctions? There is primary malfunctioning and secondary malfunctioning. For example, our heat regulation may be off. That is primary. But then other compensatory mechanisms come into play to counteract the poor heat regulation, like increased heartrate. So then we have secondary malunctioning caused by compensatory mechanisms. Truth be told, my endocrinologist has said some malfunctioning may be caused by POTS, an some malfunctioning may be the result of POTS. We just don't know.

Reality Check: How does anybody know it's not life threatening? I mean, I don't walk around fearful that every day is my last, but, honestly my autonomic nervous system does not work properly, and at this point I do not believe the doctors know enough to "fix" it. So, how can they know whether or not we are at a greater risk? After all, are bodies' are not working properly. Normal people respond a certain way to provocation from bacteria and viruses: we may not be able to respond as well, or more likely, our ANS may really struggle with the infection and go haywire. You know, like I said, I do not live in fear that any day may be my last or that an illness may kill me, but I do not think doctors know enough to state that we are not at a higher risk. Unless... somebody out there can show me where a malfunctioning ANS could be helpful during an infection? I'm not holding my breath. That being said, I hope you get well soon and feel better quickly. I lose my patience with people who make comments that it is not life threatening. I mean, we're not obviously bleeding to death, nor are we walking around with supplemental oxygen, but please, we really don't know the compensatory mechanisms in place both by us, and by our bodies, to keep us functional. I had a need to state my opinion. I hope I didn't upset anybody.

Three OTC uibuprofin (600 mg) + 1 REGULAR strength tylenol. Repeat ibuprofin every 6 hours. Repeat tylenol every 4 hours. This regimen was used for my recent toothache, prescribed by my oral surgeon. Feel better.

I was right in the middle of one of my daily rapid "walks", which I had been doing for years, when my heartrate went through the roof, and I thought I'd need an ambulance. The rest is history. One poster in the past was in the armed services and very fit when her POTS hit. Enough said. I (especially) don't like it when somebody attributes our woes to deconditioning:I know for a fact POTS, in my case, has nothing to do with that.

The problem I had when I first learned of the "recovery" you experienced because of exercise is that, many people on here were in good physical shape when POTS hit. In other words, they were already exercising and such, and POTS grounded them. Now, to take this a step further, once POTS hits, the normal response is to freak out, stop doing things, and deteriorate further. That cannot be good either. So, I suggest, pushing and doing as much as you can, despite the setback. There is a middle ground.

Are all nationalities, races, colors affected by POTS? Just curious. Are there any people of color on here? Are there Asian, Hispanics, of African decent? Thanks in advance.

Since you seem to be interested in research, I wanted to share with you that I am one of the people with a positive Achr anti-body test, which denotes a diagnosis of myasthenia gravis. The interesting (and lucky) thing about my positive titer though, is it has been that way for about 4 years (at least) and I do not display symptoms of MG. After reading your posting above, I am wondering if my "positive" MG titer is actually denoting a positive to an antibody that is not yet identified, a "POTS" antibody, if you will? Food for thought. I will mention this to my neurologist.

I have to be on synthroid as my thyroid was removed for cancer 37 years ago. I can attest to the fact that it is difficult to get to the right dose, and even if you change doses, doctors wait six - eight weeks before retesting. Things change and even medications and supplements you take can change how your body absorbs the synthroid.

Two thoughts: If the drug company could be making more making by diagnosing thyroid conditions more strictly, why aren't they pushing the stricter guidelines? I've thought about this recently. I frequently keep my air conditioner off in order to save money. The temperature where my pills are kept could be going over 85 degrees periodically. I may be rendering my synthroid impotent because of the high temperatures. The pharmacist didn't say too much when I asked him about this because he realistically does not know the temperature fluctuation in my house, or the high temperature. He said, "do not refrigerate the medicine." Anyhow, I think it's a good idea for everybody to be thinking about what you wrote because variations in thyroid can affect many body systems. The problem as I see it with POTS people and autoimmune people, is the VARIATION from day to day and how difficult it is to treat variation. Peace.

I had the caloric test (among others) done at the "Dizzy Clinic" at Hopkins back in 1996. I was dizzy all the time, and did not know I was anemic and probably prone to POTS. My caloric test was normal, but my balance was a bit off of normal for my age when doing a "standing balance" test. (Duh! I probably had POTS for years before I knew about it.) As to what the test shows and whether you have a permanent or temporary deficit, I think you're doctors are going to have to come up with a diagnosis. Interestingly enough, the ENT clinic at Hopkins (the "dizzy clinic"), did not even have a clue or give me any ideas about being tested for POTS, even though, in another area, Dr. Rowe works with children and POTS there. So, not all doctors know to "look for" a diagnosis of POTS. I hope this a one piece of the puzzle for you and ultimately helps give some answers.

I read a little bit about adrenals. It is possible that the hormone secreted by your pituitary gland (ACTH) did not secrete enough, and therefore, your adrenals were not stimulated to secrete enough. IOW, your adrenals may be responding properly, but the hormone that simulates them was insufficient. I don't know. Adrenal crises is nothing to fool around with. I strongly suggest going on a forum that deals with endocrine, and specifically adrenal issues. See : http://hormonesupportgroup.proboards.com/i...?board=adrenals Obviously, your body could not handle coming off of the medication even though it was titrated down. I hope you feel better soon.

Oh, it does.

I have interstitial cystitis, so I am "allowed" to take 50 mg of atarax 3 X/day/ I do not. I usually take 25 mg/day, and on a bad IC flare day (like today), I'll take 50 mgs. It does make restless leg syndrome worse and I hate that. At one time I was taking a low-dose benzo (klonopin) to maybe help the restless leg, but I decided to discontinue that because I kept getting fatter on it. Miriam, Are you saying you CANNOT take something for restless legs because of the atarax? EarthMother, it does have a sedating effect on me. It makes me more tired. The side effect of drowsiness is a pain when you first start, but maybe if you start low and work up, you can bypass this effect? The stuff is great for IC. I tried stopping this last week, and BAM my bladder is hurting again. Good luck.

Today we had perfect weather for POTS people. In the sixties, maybe low seventies, and breezy. The sky was blue with fluffy white clouds. I really appreciate this after days of rain and overcast weather. It was great. We have about 5 days a year like this. Hope all is well.

Amen, sister. God bless your visit to Cleveland clinic.

It helps to know this is not the cause of your problems. You seem to have such good working relations with yours doctors that they just "do the test". I wonder which doctor to ask about this, the allergist maybe? And, then the testing, you have to know which labs to send the urine to, right? Had you had a "flushing episode" prior to the test? And then you had your collection jug and script for the test all ready to go, right? I admire how quickly you can get something to your doctors and have it done.

Boy, You must spend a lot of time researching. I appreciate your sharing. I had to look up the definition of hypocapnia. For other dummies like me, hypocapnia means low CO2 in the blood. I have had some tests where the CO2 was an unexplained high. I must have been hyperventilating or was I hypoventilating? The most useful information for me was from the first article: Hypocapnia and symptoms of orthostatic hypertension are reversible by CO2 rebreathing. That means that when I'm in the mall, walking, and am finding myself SOB (short of breath), I'll breathe into my cupped hands to get my CO2 levels down and hopefully return to normal. Thanks for posting the articles.

Without substantiating evidence, I suspect that my one-year exterminator service contract, and his use of pesticides, did NOT help my health. I would be extra cautious. That's my opinion.

I think all we know at this point is that doctors do not know. I do remain optimistic that some correctable deficit will be found while I'm still on the planet.

I was one of the lucky ones in that from the time the symptoms became debilitating, it was a matter of months. I had narrowed down my symptoms and thought I had mitral valve prolapse, or neuro cardiogenic syncope (without the fainting) so I called Johns Hopkins neurology in Baltimore (where I live) and asked for a doctor who "understood" the above diseases. The doctor at Hopkins works with children only, but I was given a referral to a neurologist in my area who surmised I had POTS after taking my history and doing some "poor-man" tests. It was later confirmed with the tilt table test.

Just an idea. Ignore me if you do not feel like sharing.