TXPOTS

YES... I had a severe reaction of very uncomfortable anxiety, bordering on rage. I took 2.5mg on two separate occasions and stopped. I also had the chills and goosebumps which didn't bother me in the least. It's hard to describe, but it's not a "true anxiety", but I would call it more an extreme restlessness. It does not feel like my regular POTS adrenaline surges. Oh, the Midodrine also caused a severe headache, though my blood pressure was normal. So, in conclusion, yes, I can relate.

Thank you for posting this, firewatcher. I could not agree more and am happy that the AAP recognizes POTS as a chronic condition with unknown, possible heterogeneous pathology. As an avid exerciser with high blood volume and POTS, I hope the researchers persist and research all angles. It would be a disservice to declare all of us deconditioned.

Thank you. I have to confess that I'm one of these mutants who enjoy exercise.

I have some residual POTS symptoms, but after 14 months of exercise, I've been able to stop my other POTS medications (with the exception of one daily tablet of DDAVP). My heart rate and blood pressure are normal when up and about. I function close to 80% capacity. Pretty amazing when I was bedridden for a year. I was not part of Dr. Levine's protocol. I did my own thing after guidance from another POTS cardiologist. I have been a lifelong athlete and was very fit when I first got POTS, so I was skeptical, but ecstatic that I was cleared to exercise. This is just ME, but it took me more exercise and a longer time frame than the patients in Dr. Levine's study. I saw Dr. Levine for a second opinion in January. My blood volume is "like an athlete's" and my catecholamines are normal. I wish I were "cured", but this is good enough for now. I seem to be moving slowly in the right direction. Exercise is like brushing my teeth. I do it every day, no matter what.

Sue, It's good that you do not get the pain. I find the higher my blood pressure, the worse the pain. I am sure it is a compensatory mechanism to get blood up to the brain. I completely understand what you are describing. Even when I am supine, it is hard to relax my muscles, and I wake up with a very sore neck and shoulders. I often walk around hunched over in a desperate attempt to relieve the tension.

My understanding from physicians is the coat hanger pain is caused by lack of blood supply to the bulky muscle groups of the neck, shoulders, and back of the head. The blood doesn't quite make it's way up in many of us with dysautonomia. Muscle tension can make this worse. I am sure I tense up as the day marches on. The pain goes away if I get in a recliner and lean back. This takes the orthostatic strain and tension off the muscles. I have even tried nitroglycerin since this is a crampy, ischemic type pain, but it ended up almost making me pass out. I have tried physical therapy on the neck and shoulders with no luck, as well as massage.

I think at one point I read that Julie had coat hanger pain, and that is my absolute worse symptom. When I first got POTS, I was very athletic, but I quickly went from being extremely fit to completely bedridden. My husband had to help me to the restroom and wash my hair. It was degrading. I was like this for a good year. My mom bought me this special recumbent bike that allowed me to lean back and pedal. I gradually made my come back. I feel so much better, but I am only a semi functional person with debilitating symptoms everyday. I'll take the 50% improvement though.

They told me I am leaps and bounds beyond their exercise protocol, so they wanted me to continue my own regimen. I have an athlete's blood volume. I have been told the jest of the exercise protocol, and for me, it wouldn't be much of a work-out. I'm training for a half marathon. Yes, I still have POTS, but I can run until the cows come home. I just saw him in general for POTS. It wasn't particularly helpful, but he may be great for patients who need to start an exercise program. It's weird to be able to run, but not sit up straight or stand. Annoying. I had the CO rebreather for blood volume.

Yes, especially since I have reconditioned myself. I imagine the skeletal muscle pump is working fine, but the autonomic nervous system is supposed to kick in when we are quietly standing or sitting, and here may be the problem for some?

Count me in to the orthostatic hypertensive group. I can't blame dehydration because a recent blood volume analysis showed my blood volume was high, not low. I can't blame excess catecholamines, because they did not show a significant rise when standing. I had these tests done by Dr. Levine's team. The only explanation I got was possible parasympathetic withdrawal. My guess is the parasympathetic withdrawal is compensatory. I also notice that higher blood pressure= lower heart rate, but I am just as symptomatic as lower blood pressure with higher heart rate. My opinion changes with the season, but I like the theory of peripheral denervation or even NET deficiency/ hypermethylation of NET, since my ang II levels are low/ normal.

I can relate to simply not being able to eat. At the worst of the worst, I can recall being in a hospital bed willing myself to be able to take one bite of the meal set before me. I felt like I was on an episode of Fear Factor, trying to eat gross things, but gagging it back up. You are doing the right thing by trying to get down the Ensure. Just keep plugging away at it. I did gain my appetite back! I enjoy food and lots of it these days. As for the Lexapro, Dr. Grubb and others recommend SSRIs for some POTS patients, so why not give it a go? You can always stop it if it makes you feel worse.

Nunntrio, Since becoming afflicted with this lemon of a condition, family, friends, and neighbors have taken my heart rate challenge. This what I have noticed from my very limited population study. There are some people, like my husband, that only have a heart rate increase immediately when standing, but the rate quickly returns to baseline. They can stand in one place for great lengths of time. Other people have an increase in 10-15 bpm which is sustained. Then, there is my mother and another female friend who have sustained heart rate jumps between 20-30 bpm, AND it is very uncomfortable for the two of them to stand in one place. They start feeling pressure in their legs and dizziness. My friend and my mom do not have POTS. Some people have better orthostatic tolerance than others. It becomes a problem when the heart rate jump is excessive or accompanied by symptoms affecting your day to day quality of life. I bet there is a large subset of the regular population that find it uncomfortable to stand still in one place. I think you have a valid question. My heart rate jump was huge when I first got sick, but now my heart rate is under control, but I still have symptoms.

Ah, the classic Florinef headache. Not fun! You may need to tinker around with the dose with your doctor's permission. Maybe 1.5 tablets? The tablets can be broken in halves and even fourths. It is a balancing act between finding a dose that is helpful and not going overboard. 0.1-0.2mg is a middle of the line dose. Maybe you are noticing the pooling of blood now that you have more due to Florinef. You should report swelling to your doctor. Yes, Florinef promotes sodium and fluid retention by mimicking aldosterone. It also has mild vasoconstrictive properties.

I have the results here, and my METS were 10.8 or 125% of reference (whatever that means). However, it has Functional Capacity: 10.8 METS. Are METS and functional capacity one in the same? Later on it says above normal functional capacity, but it does not assign a class. Breathing Reserve: Normal; BP response: Normal. There are a slew of other measurements like anaerobic threshold and VOmax, Work, etc, etc, etc... Wish I could help more, but I do not understand the test well enough.

As a general rule... If the half life of a drug is 24 hours, then 50% of the drug will be out of the patient's system in 24 hours. At 48 hours, 25% of the drug will be out the patient's system. At 72 hours, 12.5%.... and so forth. The half life is NOT the same in everyone's body. There is generally a range. The range of Klonopin is 18-50 hours, depending on the individual. Many drugs do not follow a neat, linear pattern, and there is a whole field called pharmacokinetics that delves into this issue.

My CO2 test result.

The high expiratory CO2 and high respiratory quotient I had at rest ended up being not clinically significant and the result of not having the test performed under a well controlled environment. A cardiologist at a research facility that is well versed in performing and reading these tests said it was basically garbage and not something to be concerned about. A couple pulmonologists concurred.

This is the first time using the "quote" in reply, so don't know if it worked. Funny, funny!! We sooo know what is NOT causing our POTS!! Still looking for that elusive cause.... LOL Nunntrio and sue, That's how I felt when I got my ang II levels, and countless other tests.... After my last appointment, I told them out of frustration that I was done until the researchers go back to the drawing board and come up with some new ideas. I think I'm just as likely to find what works for me. No more medication experimentation for now.

Elfie, Your progress seems in line with mine. I especially understand being able to go further with less symptoms if I keep a brisk pace. I can jog until the cows come home, but I have difficulty slowly walking around. On one hand, it is very frustrating to still have POTS, but on a positive note, I am overjoyed that I can exercise. During some very dark days, I thought I would never be able to jog again. Boy, was I wrong. I am happy to smash the stereotype that all POTS patients are "deconditioned". I will be running my first 10K and then half marathon this year. I find that if I try to keep moving throughout the day that I feel better. Feel free to PM me.

Thanks yuliya, If it makes you feel better, I can't walk around for 10 minutes without getting dizzy, blurred vision, and pain in my neck and shoulders. All of this goes away when I start exercising. My doctors say the increased cardiac output and use of the skeletal muscle pump during exercise work to pump blood back up to the brain once you are conditioned. I know we're all different though and some patients are unable to exercise or have a tougher go at at it.

I could hardly stand during my worst day with POTS. Now I can exercise a good deal more than an average person. It has not by any means cured my POTS, but has significantly improved my symptoms. I started on a recumbent bike and progressed to weights and upright exercise. Today I can jog 8 miles. I would start with very small goals.

Thank you for taking part in the POTS study, nunntrio. I would love to see the full text as well. Dh may have to make a medical library trip. Goodness, I would want to know what MY results showed, or at the very least, get a follow up call before the study came out.

Lissy, Is your high bilirubin primarily uncongugated/ indirect? There is a benign condition that is very prevalent (3-9%) in the general population called Gilbert's syndrome. I have this syndrome and my bilirubin ranges between 2 and 3 mg/dl. It is totally benign and has nothing to due with liver failure. We have a defective enzyme in the liver that makes it challenging to break down bilirubin.

Exactly, I am skeptical the sample was handled with such diligence.

Dr. Stewart and his team were the first to find elevated ang II levels in some POTS patients. I believe these were patients from his "low flow" category. I had my ang II level measured and sent to the same Quest lab that Dr. Stewart used. Mine was low, not high. I also had low renin and low aldosterone, so I was curious if I could fit this category. I have not read the full text of this new Vandy study, but it would be interesting to know how they measured ang II. I was on a high sodium diet at the time, and I noticed sodium levels were controlled. Theoretically, an angiotensin receptor blocker, like losartan, may be helpful. I have been prescribed losartan, but I am too fearful to try it since my ang II levels were not high.