Is There More To Pots Then Bp And Hr?

[roxie]

HI!! This has been bothering me for a while b/c I just don't understand.. is there more going on in our body with POTS then just lbp and tachycardia???

For a while now I have been on meds that have helped both my bp and hr, however I don't feel anywhere close to normal, so I just don't understand... does anyone??

Madeline

[pat57]

http://www.nymc.edu/fhp/centers/syncope/POTS.htm

[DSM3KIDZ]

I feel the same way, I get my bp and hr settled and I still feel sick as a dog. I wish it was just hr and bp because maybe it would be easier to solve. I think our whole bodies are out of wack.

Hang in there

Dayna

[yogini]

Apart from a few episodes here and there, my BP and HR have been regulated by meds since being diagnosed. I still felt pretty miserable even though my BP and HR looked "normal". The main symptoms I was having were dizziness, fatigue nausea and headaches. For a while, my doctors even kept insisting that I was fine and these symptoms weren't POTS-related. After a lot of back and forth and seeing many different specialists (and finding this forum), I finally figured out the symptoms WERE indeed POTS. So I'm someone who can attest that it is definitely possible to have symptoms even when your HR and BP aren't acting up.

I agree with Dayna that something is off in our bodies - it's like the meds we take can help with actual HR and BP, but not necessarily whatever is going on in our bodies to cause the HR and BP to be off in the first place. (Not to mention that the meds themselves have side effects. I know that my BB makes me really tired.) You may want to check out the DINET main page - there is a good explanation about the mechanisms of POTS and the various symptoms.

[masumeh]

I read somewhere that the vitals they take laying vs standing (my office calls them orthostatics) which includes hr and bp during changes of position are generally considered some kind of telltale sign by which the doctors can guage overall recovery from POTS. I'm doubting that myself, however. My doctor insists that all symptoms--gastric, cardio, muscular, the whole thing--recover together in a gradual fashion. He's a cardiologist and seems to think it starts with cardiovascular weakness and that affects other organ systems....because he always explains recovery symptoms in terms of, "Oh, that is because your __muscle, ears, whatever it is__ have been deprived of adequate blood flow for so long, they are just now waking up!" This implies that if a medication helps alleviate that key symptom of cardiovascular health, it is probably helping all symptoms or will eventually. Sounds like a cardiologists' perspective, to me, though. I wonder whether a neurologist, who sees the disease from another view point, would concur. I doubt it. It is nerve damage in the area of the nervous system that regulates all organs...however, how much of that system, which specific areas, are damaged for each individual probably differs. I had some experience with Liver dysfunction, GI track problems, breathing, heart rate, but my hormones are fine. So it seems to me like liver, GI, lungs and heart are most affected for me. For others, it seems to be kidneys, adrenal glands, and endocrine system included.... But the common factor seems to be heart and lungs....perhaps because those are affected first? There is so much more that the medical community needs to know about POTS and dysautonomia in general. One problem in understanding the disease is that it affects so many systems, and there is not a single doctor who can specialize in all these areas. So, it seems to me, the disease is not understood holistically...just piece by piece from different specialists without many connections between them. Each specialist treats what he/she knows, and believes that is the most important. It would be really good if there were a POTS treatment center that combined a team of specialists in all the relevant areas, who would coordinate with one another and share perspectives and expertise.

[roxie]

I agree with you mamuseh!!! a bunch of dr's should collaberate b/c each one has their own ideas

[deucykub]

There is, and I'm always having to remind myself of that.

BP and HR are the empirical medical signs that go along with all of the symptoms. Doctors seem to focus on those because 1. they are vitals and 2. they are readily measurable. My understanding is POTS is a disorder of the autonomic nervous system, which controls pretty much everything you don't think about until something goes wrong. There are medicines available that raise/lower blood pressure and lower/control heart rates, so those are prescribed - known problem/known solution - but those medicines don't seem to directly address the overall ANS dysfunction. Things are still going wrong in the ANS. We just have splints to help with the signs and symptoms (like a splint for a muscle injury, it doesn't cure the injury, just restrains it).

That's my theory today at least.

[doctorguest]

Deucykub,

Yours is a pretty accurate understanding of the disorder. Unfortunately, many medical conditions have unknown mechanism and symptomatic treatment only. The difference is that conditions of the autonomic dysfunction is a relatively new field in medicine, and therefore, recognition and knowledge of these disorders by mainstream physicians is limited compared to the well-known conditions, although younger physicians appear to be much more knowledgeable in these because of better education and training in the area of autonomic dysfunction now compared to 10-20 years ago.

[deucykub]

Well, I guess I'll hang to that theory a little longer then. Thanks, Doctorguest!