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Well I think I have hyperpots. -panic attacks -strong urge to constantly be moving -sweaty palms -hot flushes -anxiety -BP increases probably some other symptoms I'm currently forgetting.

say whaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa .........aaaaaaaaaaaaaaaaa t? I'll look it up. EDIT: Flyingsquirrel pretty much summed up my opinion.

I started exercising heavy duty again since last month. Still feeling bad since my last relapse, but I'm getting periods of time where I'm feeling better again. This mirrors my experience from march-april (the two months I was feeling a lot better)

http://www.springerlink.com/content/h213vprx561k5p10/

E Soskis, thanks for writing this, I found it helpful and very clearly stated. However, I do want to say that the issue of cerebral autoregulation is not decided in POTS patients. It might even perhaps be partitioned amongst the various POTS subtypes. You mention AAG, that is often associated with low blood pressure. For me though, my blood pressure actually goes up while I stand. What I mean is, there was a study here: http://jap.physiolog...t/99/3/828.full That said that cerebral autoregulation and brain blood flow is comparable to control patients. Now, there was another study by Dr. Stewart which had the opposite conclusion. The difference could likely be due to different types of POTS patients used in either study. I think if we're talking about POTS in the context of low blood pressure or shock as you mentioned, then hypoperfusion and subsequent syncope is likely. For my POTS however, where I have not fainted, but yet still experience significant presyncope, I think it's more of excessive norepinephrine which is throwing off the proper autoregulation of the endothelial cells both in the brain and elsewhere which is causing the symptoms despite having normal/high blood pressure. This could be through a variety of mechanisms, probably both direct and indirect (excessive norepinephrine disrupting the renin-angiotensin-aldosterone system)

Do you know what's happened to Rama? Haven't seen him post in a while. Ya, I can state the obvious in that it's difficult for POTS people to work jobs that require lots of standing. (lol) I guess the only constructive advice I can give is to find a job that doesn't require standing (for prolonged periods of time anyway) and I do know that Lemons has been able to adapt to it. Today I'm feeling better.

Didn't get to run this morning (running in the morning seems to preemptively diminish POTS symptoms that would have occurred later on) So I recently got a full time job in an office. Worked there for 2 weeks, managing ok and all. Today I had to cover for someone who's shift is predominately standing. First 2 hours I was ok, but then after standing for that long it started to get to me. My body began feeling flushed and hot. My lightheadedness kicked up, and I just really felt disoriented. At that point I tried sitting down, but I find once my POTS has crossed that line, there's no going back until I've laid down for a while. Right now I'm just feeling like bleh, and it's so discouraging to have this kick me like it is. I just want to get better so I can live a normal life, but no matter how far I think I go I just can't seem to shake out of this.

I said "POTS" and "Dysautonomia" and I spoke to the receptionist who then spoke to the doctor. So I don't know. I'm wondering if anyone has ever had that experience? (a local random doc being an expert on POTS) The doctor's specialty is a neurologist. But even still, I've seen neurologists in the past, many haven't heard of POTS, and the newer doctors seem to know just the basics of it, but not really much.

So I called around my area, and one of the doctors mentioned that she treats POTS patients nearly everyday. I find that difficult to believe given my experience with other physicians I would say 75% of whom haven't heard of POTS prior to my coming, and the rest have maybe heard of it, but haven't really dealt with it. Could this really be true? Am I getting my hopes up? I'll withhold my excitement until I actually see them.

Nowwhat, those studies you're referencing are generally citing pathology that's leading to alzheimers. I.E. if you have the same pathology, then MCI would indicate 6-7 years alzheimers. However, it's not known whether your MCI is stable as you mentioned. I don't understand why your doctors are being complacent with the UBOs on the MRI, it might be a good idea to try for further testing. If you're desaturating to 72%, even for brief periods that is something that your doctors are going to want to treat.

I would say it warrants a tilt table test, yes. You're getting near 30+ bpm rises just from standing.

I do think that POTS can cause cognitive impairment in the sense that hypoperfusion of blood will limit your working memory, attention, and ability to concentrate. However, when we're talking about neurodegenerative illness in the sense of activating a process that leads to neuronal death, that is something else to consider. Given the fact that the cerebral hypoperfusion is similar between POTS and IST patients, we can probably safely include data from both patient sets in our analysis. In both patient populations, it does not appear that they are at a significantly increased risk of developing dementia than the general population, and there are studies that follow patients prognosis out for many years. Of course there is also the informal analysis that there are doctors who have patients who have had POTS or IST for decades, and if there was a strong correlation between such patients and neurodegeneration, I know they would have published on the finding by now.

Well sleep apnea is well known to cause mild cognitive impairment. Keep in mind sleep apnea can get worse, especially if the obesity is recent as gaining weight can exacerbate the condition. Since you've had untreated sleep apnea for years that can definitely be your go to culprit for correcting your MCI.

Yes, when I turn my head side to side I hear a clicking popping sound.

I haven't been able to find a study on this issue but I would not be surprised given that heart failure patients seem to improve with endurance exercise and of course HF has been correlated to increased NE and NET deficiency. Also excessive NE in POTS patients seems to respond to endurance exercise and of course there is a strong ideation of NET being involved with POTS as well. This study is also of interest though:http://www.ncbi.nlm.nih.gov/pubmed/8044969 Which suggests that exercise can ameliorate vasoconstriction caused by NE. This vasoconstriction might have an etiological role in POTS for a variety of reasons.

I don't want to sound like I'm bragging but today I had a pretty good workout that I'm proud of. I did weight lifting for an entire hour. Intense weightlifting too, where I was lifting to failure most of the time. I squatted 265 pounds three times which is my new best. My heart was exploding afterwards, but honestly if I can stand with 265 pounds on my back, I figure I'm helping the muscles that will eventually get me better.

Yes puppylove, I also notice that lights trigger my symptoms as well. Definitely feel better in dark surroundings. I suppose the photophobia is due to some type of CNS sensitization we have, sunglasses can help!

Dani, did you get any followup with the brain mri? Hope you get some useful answers from this autoimmune diagnosis.

FB, back in January I tried hydration therapy and I also noticed that I would urinate out the excess usually within minutes of taking it down. One thing I've noticed though is that my exercise program has made it so I can keep down larger volumes of liquid + salt. I am noticing symptom improvement after about 4-5 glasses of salt water.

I haven't yet tried a saline infusion, but I see a lot of people seem to improve with ~2 liters of Saline given over a 2 hour period. Doing some quick math I see that 2 liters of saline would approximately be equal to 9 glasses of salt water. I'm thinking about just trying to down 9 glasses of relatively same concentration salt water over a 2 hour period and seeing if that can produce the same effects. Has anyone tried this amount and had success with it?

Over the past few months I have had brief interludes of symptoms. These periods of remission remind me that it is possible to get better but unfortunately they don't last long. Hopefully one day ill get that remission that finally does last.

I can't really answer your questions as I'm not going through the same things you are (I will defer the answers to these specific questions to other members). It sounds like your POTS is on the severe side of the spectrum. Even though you got a diagnosis of POTS from your tilt table test, that is not enough if the symptoms are having this severe of effects on your life. There are currently some recognized subtypes of POTS and emerging subtypes of POTS being identified. -Hyperadrenergic pots -Ehler Danlos associated pots -autoimmune pots -deconditioning induced pots -MCAD pots -venuous malformation pots -low vitamin D induced pots -other connective tissue associated pots -NET deficiency pots and there are probably others I'm forgetting. There are centers for autonomic dysfunction that can test you for the specific cause of your pots, Vanderbilt or Dr. Grubb at the university of Toledo would probably be good people to go to if possible. Coping strategies. Well, for me I've found that exercise improves my symptoms, I started slowly and worked my way up to a more vigorous program. This would have to be something you would probably need to do under supervision if your symptoms are severe enough to limit your ability to stand for periods of time.

This might not be true for others but for me I find that doing exercise before a stressful event makes me feel better during that time. For instance I might go for a jog before I have a meeting of some sort. This would most likely work if you don't crash after your exercises.