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POTS come and go?


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Can i get some enlightenment please..

I have pots condition more than 15 years. it happens quite a lot too. (HR 30-40bpm more than 100bpm from supine to standing)

But there are days/weeks where it doesnt happen or it got better. when my overall condition better/more fit/healthier. 

But when i get a little unwell/worse it appears.

Problem is the condition is not known here, theres no specialist of Pots. So im clueless. :( if i try to talk to them they usually say i dont have pots cause sometimes i dont get symptomatic.

also im confused cause the heart issues often happen when sleeping/after sleeping/woken up. Although i read that dysautonomia can caused it too.

Other than pots i also have other issues like. Muscle joints pain, digestive issues, food/chemical sensitivities/intolerances, tightband on waist, constant cracked lips, apnea, temperature issue, vertigo, insomnia etc.

Thank you for whoever reply. :)

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All the symptoms you describe sound like dysautonomia symptoms. Who have you seen ( cardiologist? ) and what have they prescribed for your symptoms? Are you on any meds? Are you doing fluids, salt, compression? --- Yes, POTS symptoms commonly flactuate. Good and bad days are normal, even weeks of either are common. The most important thing is to listen to your body and rest when you get tired and be more active when you can. Have you seen a GI for your stomach problems? I would highly suggest that because the digestive issues can be quite severe in POTS. The cracked lips lead me to suspect you might have deficiencies, like B12 , ferritin and Vit D. These often are low in dysautonomia. Ask your PCP to check them for you. I felt much better after supplementing all of these. --- There is no specialist in my state either, I drive 8 hours each way to see my specialist ( Dr Grubb ). It's worth every mile! He has a one year waiting list but he spends a lot of time with you. And after you are established you can send him questions or concerns over the portal and they respond within 2 days. I only have to see him every 3 years in order to stay an active patient, of course if I get bad or need meds adjusted then I see him. But there are many physicians listed on the physicians list on this site, you might find someone closer to you? If you don't feel that your current docs understand your condition or do not know how to help you a trip to a specialist would be wise, even if it is far. Many members here travel quite far for their appointments. Best of luck - please keep us posted on how you are doing!!!!

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Guest KiminOrlando

I drive 6 1/2 hours to my POTS specialist. It is worth it, even if you just get diagnosed, then see them once a year to oversee your local doctor. 

Did they check your ANA? Some of the stuff you are talking about are common with autoimmune diseases and autoimmune can run in tandem with dysautonomia. Maybe your primary would run that blood test to see if you would benefit from seeing a Rheumatologist. Get a copy of the bloodwork though. Sometimes they tell you it is negative when it is inconclusive or mildly positive. 

Your symptoms sound like mine early on. It took me a long time to find someone who could help me. Don't give up.

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Not sure where you live but there are clinics cross the US that could get you started. Then a local doctor can continue your care. Some of the clinics I am aware of are Mayo clinic, Cleveland Clinic, and Vanderbilt. I drive 3 hours for my specialist I see a few times a year and honestly having that specialist can be very reassuring. They know what they are doing and don't treat you like a hypochondriac. 

POTS symptoms can come and go. A lot depends on your underlying cause. I suspect I have had mine since I was a teenager but it didn't get bad til 3 years ago. Since I have been on medication for it I have noticed there are days my HR is fine, but my other symptoms can go haywire. In theory controlling the HR should control the symptoms but it doesn't seem to work that way. At least for me. I would definitely try to see a specialist and see what they say or could do for you. 

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@Pistol @StayAtHomeMom @KiminOrlando

Thank you so much for the helpfull information. Unfortunately i dont live in US. I live in southeast asia :(some doctors ive seen dont know about pots. I just got betablocker. I try to get test and diagnosis. But i dont know which test available here. Maybe just the standard one. I read about autoimmune test, aldoesterone renin, blood cathecolamine, urine electrolyte? Which are the important tests? I usually just check for serum potassium sodium magnesium calium. 

Was pots also affecting adrenal insulin? Cause sometimes i get hypoglycemic symptoms randomly but it doesnt happen a lot.

My vit d is below normal and anna test is possitive 1 but doctor said its because im low n vit d. 

I thought dehydration sign is crack lips? Cause i already drink tons of water but still...

i havent got endoscopy cause im worried about the anesthesia 😕 i go on a diet that stay away from problematic food.

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Well - I will tell you what I had done: most important is rule out pheochromocytoma in blood and urine. I also had autonomic testing dome, 2 TTT's, echo, stress-echo. stress test, numerous halter monitors including an implanted one that recorded for 3 years, I had serum catecholamines ( which confirmed hyperadrenergic POTS ), EGD, gastric emptying studies, MRI's, CT's, blood work: thyroid, autoimmune panel, all the regular labs, B12, iron panel, VitD, I had longterm EEG for syncope and seizures ( confirmed cerebral hypoxia from vaso constriction ), neuro-psychological evaluation for brain fog and memory problems, neurological evaluations and most importantly - seeing my autonomic specialist. I am sorry that there no specialists where you live - maybe you can ask your local doctors to check for at least the deficiencies and aslo - IV saline infusions have been proven to be very effective for POTS symptoms that are not controlled by meds or other treatments. Here are some common meds prescribed for POTS: SSRI/SNRI, beta blocker, Midodrine, Fludrocortisone, Pyridostigmine, Ritalin or Modafinil … your doctor's might be able to pinpoint which type of POTS you have and then try the meds that are usually well tolerated for that type of POTS? --- I truly wish you only the best. The best I can recommend again is to listen to your body and rest when needed, be active when possible, drink fluids, load salt and try compression garments. 

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I have had full PFTs, echocardiogram, EKG, 24 Holter monitor, 2 TTT, 2 urine catacholmine tests, basic blood work, 3 ANA blood tests, rheumatoid panel, ultrasound of upper right abdominal quadrant, endoscopy, 2 sinus CTs, a brain MRI, 2 chest x-rays, chest CT and a nerve conduction study. I am sure I have had more testing but I can't think of anymore. 

The anesthesia for the endoscopy I handled well. CT contrast not so much, MRI contrast was fine. 

I have low vit d (18 at last check) and my ANA comes back negative. An elevated ANA may cause vitamin deficiencies but only because autoimmune is linked to low vitamin d. I have never heard of it causing it. 

One sign of dehydration is cracked lips but other things can cause it. If you have no other signs of dehydration I would look at something else causing it. Have you ever been tested for Sjogren's? 

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@Pistol @StayAtHomeMom

Thanks a lot for the reply and info. 

For the cathecolamine test, shouldnt the symptoms have to be, epinerphrine rush everyday? What if i dont get it but only occasionally, there are times when i dont get it for days?

I usually get surge contribute to sleep/when sleeping.

The ANA test brought me back when googled and read many research said that betablocker could raise antibody/autoimmune. When you test it do you take long term BB? I worried since it said BB could induced autoimmune. And wonder if mine test positive becauase of it. But i also read that autoimmune could be the culprit of pots. But it came out positive low though its long time ago.

May i know the tests in autonomic testing are?

Neuro evaluation, nerve study, those arent familiar to me.

Stress echo test seems important but i never got it. Only the ecg stress test.

An autonomic specialist supposed to be different than the regular neurologist right?

Seems like the regular neurologist more knowledge in pinch nerve, stroke and stuff like that. At least thats what i see here

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Dear @kisekis - an autonomic specialist can be neurologist or cardiologist or even endocrinonologist, it is a doctor who specializes in autonomic dysfunction. Most often they are cardiologists because the most severe symptoms are tachycardia and cardiovascular problems. --- About the ANA: don't worry necessarily about the BB, I have taken different BB's for almost 10 years and my ANA etc is always normal. Replenishing the Vit D is very important. Here in the US they order loading doses of up to 50,000 Units Vit D weekly for up to 3 months and then 2000 units daily. Just supplementing daily with a maintenance dose is not enough to bring the levels up. I would try to find a cardiologist who is familiar with dysautonomia if there is one in your country. 

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Not sure about the catacholmine test needing surges everyday. 

BBs and ANA shouldn't be an issue. I take BB and I have yet to test positive for ANA. I suspect I have autoimmune but I can't prove it. Yes autoimmune can cause POTS as well as a host of other things. 

Autonomic testing is at minimum a Tilt Table Test, blood work, and urine catacholmine. Doctor can do more testing such as an echocardiogram to check heart structure, MRI, and nerve conduction studies to check the nerves in your body. 

I am not sure about your neurologist question. My neurologist is my POTS specialist. And the only one I have seen. He sees all things though. Feels weird waiting in his waiting room though because I am one of the few younger people there. Most of his patients seem to be older. 

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