Praxxtor

I'm on verapamil which I believe relaxes the muscles of your arteries and causes some vasodilation, but much less so than something like nitro that people take with heart conditions. It doesn't help any of my POTS symptoms other than chest pain/ pressure.

That's interesting. Do you have high blood pressure? So you have something like local vasoconstriction confined to your chest area? Does the medication solely target your chest area or does it have a much wider effect?

Thank you Katie.

Ill utilize the search facility and see what pops up. It feels good to know that it is a viable treatment method for POTS patients.

Hello

Does anyone here take vasodilators for POTS? I have noticed hot showers help me immensley and the only reason I can think of why it is helping is because the heat dilates my blood vessels. Quite frankly I believe my POTS problem stems from too much/uncontrolled vasoconstriction. This is further reinforced when I visited family abroad and their home is very warm and so I noticed how my light sensitivity was completely gone. It was short-lived when I returned back to the UK. My home is more on the cooler side. So i guess what I'm asking is, does anyone here take vasodilators for POTS? I feel kinda ridiculous going to the docs asking for vasodilators as it's not exactly what a POTS patient would take to feel better hah.

Oh it was not a tilt test. I was just sitting then standing with electrodes and blood pressure cuff. Tilt test in a month.

Ahha. Let us know how it goes then.

How long did they have you stand by the way?

"Postural orthostatic tachycardia syndrome are indicated by decreased sympathetic response to standing and reflex tachychardia"

This to me translates as when you were tilted up your sympathetic tone withdrew as a result reflex tachycardia initiated possibly due to vasodilation? Did they say if you had blood pooling?

The catecholamine testing is used to detect hyper pots.

Did they suggest any medication? Treatment methods?

Did they test your catecholamine levels?

My resting heart rate hovers inbetween 40-50 bpm. I have POTS.

Instead of my feet if i raise my arms to shoulder length or higher my arms will emit that pins and needles sensation with numbness.

Hey Rob!

I too showed only heart rate issues when tilted up and besides that is the diagnostic criteria for POTS. It doesn't require any hypo or hypertension, just a 30+ bpm increase or one that exceeds 120 bpm. Obviously they insist that one must also experience symptoms when upright, that the heart rate increase is not necessarily enough. Did they say how much it jumped or what your baseline heart rate was and what it reached at the end of the test?

Thanks Sarah. I shall see what I can get the doctor to try. As for symptoms it would be my digestive system and eyes followed by orthostatic intolerance. I just know the answer is somewhere between the blood vessel constriction and hot showers as i tend to feel much better afterwards. Fingers crossed.

Hi there.

Ive been meaning to ask what sort of treatment is there available for those with normal or mostly normal BP. Well ive come to the conclusion that my BP is normal as no mention of it was made during testing.

I was diagnosed with POTS but given no means of medication. Just the usual volume boosting and whatnot. Salt makes me feel worse and I dont feel the need to drink fluids or more thirsty than usual or have i noticed that my symptoms are due to low blood volume.

From what I gather most if not all medication is out there to mainly solve BP issues. Although I have noticed that hot showers seem to make me temporarily feel much better which is quite the opposite of what most POTS patients would say. I did once ask a reputable 'ask a doc' site about the shower thing and it was mentioned that it is possible to see such relief in hyperadrenergic POTS. Ive had this feeling that my issue stems from some kind of vasoconstriction. Needless to say I found out that there are vasodilators. Im just trying to figure out how to go about requesting a trial based on my clinical picture.

I recovered in 5 minutes.

I actually forgot the most important piece of information that I meant to add in the initial post.

That is, I feel great having hot showers. I can stand under the shower head for long periods of time having the water pour over me. Hot showers alleviate my eye symptoms particularly the light sensitivity. This is the main reason I feel my issue is vasoconstriction.

Of course, it's just all theories in the end!

Trying to figure out why it takes so long for the blood to pool in my legs. To be frank most of the time I feel vasoconstricted and feel this to be the reason for the extreme delay in pooling that happens very slowly. Most of the time I have cold hands with blue nail beds, fingers and palm, pretty much can be the whole hand. Same goes for my feet. I also tend to shiver a whole lot and yawn excessively. With activity/routine I am constantly pale. This has been noted by everyone. Also the more active I am the harder I find it to stay warm and the tiredness takes a toll. I'm only in my 20s but I fall off to sleep in classes, tubes etc. Surprisingly the longer I endure and the colder I feel the worse my eye symptoms are (Extreme light sensitivity amongst other things). That's when I realized that vasoconstriction can cause pupil dilatation. I've seen a few Opthalmologists and all were surprised by my large resting rate of pupils. Unfortunately they weren't able to explain why. Most of the people that I meet usually assume I am on drugs (lol) until I clarify that I am not. The point is I feel there's a connection somewhere.

Anyone able to pitch in?

Thanks in advance!

With Pots blood pressure can remain stable, drop or increase and even fluctuate.

Well the goosebumps you experienced were probably due to sympathetic activation. The fight or flight response system the one pots patients normally have on most of the time heh. As a teen the heart rate increase criteria is 40. High 50s to 95 is just shy of the criteria. Did you feel excessively symptomatic at the 5 min mark? I wouldn't worry though as your muscoskeletal pumps were aiding you in return most probably keeping the heart rate under better control. On the tilt test it'll be different as you'll be leaning.

I am currently awaiting for a doctor's appointment about POTS/dysautonomia. I surfed on the net trying to gain informations but there is a lot of confusing things. I'm complaining of lightheadedness, headaches, blurry vision, nauseous and fatigued especially in the morning, severe polydipsia, hair lost, anhidrosis, dry skin, dilated pupils, sometimes anxious, heat intolerance. I know it's a long list but wanted to be precise. I never measured HR and blood pressure despite occasional palpitations. I'm suffering since developming autoimmune disease in May 2009 and the symptoms are slowly but gradually worsening, I am feeling really bad since mid-2013, not able to do much. My resting HR is in high 50s, standing for some time reaches 90. Don't know if I made that test correctly. And I have some questions:

1) Why the heart speeds up while standing and I started to feel dizzy and has blurry vision and cold hands? Low blood flow?

Due to a malfunctioning autonomic nervous system. Your brain is deprived of blood and so symptoms occur.

2) Is it possible to do some tests at home?

Yes! Try the Poor man tilt test. Lie down 5-10 minutes then take a reading. Stand up and take readings at 2, 4, 6, 8, 10 minutes or 2, 5, and 10. Stop if you feel as if you'll faint!

3) Why am I feeling worse in the mornings?

Seems to be a given for most patients with Dysautonomia. Perhaps it's because it takes time for the body to adjust to upright position after laying down several hours.

4) I prefer colder temperatures, in warmer weather I overheat so easily and then must recover for many hours if not days. Is it normal in dysautonomia?

Heat dilates blood vessels and cold constricts them. This is something you'll hear every dysautonomia patient mention!

5) Can dysautonomia be an explanation for elevated adrenal hormones, hair loss, cold hands, anhidrosis, morning nauseous, often headaches, lymphocytosis and blurry vision? For it all?

I believe so! The body has to work harder to maintain homeostasis! Most of those are common to Dysautonomia.

6) I'm male in late teens but from I heard POTS/dysautonomia is usually female disease, so as a male can I have it?

Of course.

Very interesting Helenhz! Thank you for pointing this out! Will look into it later this evening!

Hi there Art,

I too experience palpitations literally all day but as far as my doctors are concerned if the palpitations aren't accompanied by things like chest pain, chest tightness, dizziness etc, then they are 'most' likely benign and nothing to worry about. Just to be sure though like Corina stated, ask your doctor about it!

Interesting. I have POTS and instead experience wide pulse pressure. My pulse pressure difference is usually around 70. For example 120/50. My diastolic at times drops even to 120/40. Surprisingly my Systolic remains very stable. Guess it means my heart works efficiently?

Thanks for the replies everyone.

It certainly does get confusing sometimes. To be honest I'm not really sure of my diagnosis. My doctor says NCS (had the tilt table etc) but my heartrate shoots up past 30 points as I stand up, as per the pots diagnosis criteria, and all of my symptoms definitely match up with pots. Maybe I'm one of those with both, I'm not sure at all.

To fulfill the criteria for a POTS diagnosis I was told that the heart rate must sustain 30+bpm from the supine resting heart rate. If it jumps high from lying to standing but within a minute or two drops under the 30 beat criteria and stabilizes then it's negative for POTS. Have you tried doing a Rich woman tilt table test? You sound like you may have a bit of both conditions. Have you fainted while sitting or lying down? Dysautonomia sure is complicated!

I experience blood pooling but that doesn't seem to affect my blood pressure.

If another specialist also dismisses it or rules it out as inconclusive then I would suggest going for round two of autonomic testing. Good luck! Take copies of your results to the desired hospital in London which you want to go to for testing and ask their input. Maybe that could save you from having to spend a fortune on a second round of tests!

Thanks for your reply. I think if I don't get anywhere with the GP or hospital then I may have to go privately to prove that I do have something going on with my ANS. The people who did mine spoke during the test but afterwards the doctor said I had POTS and gave me a Tilt Training instruction leaflet and the technician wrote at the top that I also had NCS.

I think I am angry that I was informed that I had POTS and NCS and then seeing this letter really threw me. I've only had the TTT done and nothing else at all. I think that's all they would offer at that hospital. I was shocked because it was cut and dried or so I thought. My body reaction to what was going on showed that something was not right and then the person who wrote the letter mentioned the physical problems I had as well as my BP and HR changes, but then simply stated no POTS and that was it. I want to to get this checked out because my lifestyle is really being restricted with the symptoms I am suffering from.

I think it bears some investigation. How did you get on in London? Did you get the full autonomic testing done over two days? I would like to have that done.

Many thanks!

The staff in the hospital were very friendly and the doctors seem to give you plenty of time to voice your case. My 2nd day of testing was just to return the ECG monitor that I had been given. Then again I wasn't booked in for ALL testing...one I am certain I missed was the exercise test. All my testing was done on the same day. All I'll say is find out what happened in regards to your results and if they insist that everything is normal then just head over to UCLH. Good luck and let us know how it goes!

I had my autonomic testing in London at UCLH, which I believe you are referring to. Well if a technician and a doctor both confirmed you have POTS perhaps it's a better idea to call the clinic and ask what is going on instead of getting it done again? When I had my TTT done, the technician kept very quiet about what my bp/heart readings suggested and told me to wait until I received the results from my doctor. It might just be administrative error perhaps? At UCLH you just have a technician in the room, well in my case and then you receive a letter in the post regarding your results.