yogini

I hope you get some answers and think you will mentally and physically feel a lot better if you get some sleep. You can then see what symptoms remain. I agree with MomtoGiuliana, it doesn’t sound like you have MSA, which is dysautonomia.

Have you had a sleep study? I think laying on the couch could exacerbate your symptoms. Can you force yourself to do some standing, walking or stretching? That might have the added benefit of tiring you out.

Shortness of breath while talking is a common symptom. dysautonomia means that not enough blood is getting to your brain especially when in an upright position. Many of us have pooling which means blood collects in the legs. I am not aware of any way to test the blood flow to the brain. Most doctors treat the blood flow problem by trying to increase either blood pressure or blood volume. You can look on the diner page for the various treatments available. Sometimes people take oxygen but It seems less common.

I don't believe this symptom would be related to dysautonomia.

Many people write about flying but airplanes are pressurized so it isn't as bad as being at altitude in my opinion. Airplane travel was exhausting for me when I first got sick and I felt sick for days after getting home. Now I don't feel it at all. I think it very individual and also depend on the severity of your dysatuonomia. Since getting POTS almost 15 years ago I have avoided altitudes. I did go to Switzerland a few years ago and went on a day trip in the Alps which are about 11,000 feet. I felt a bit out of breath, but no headache or lasting effects. As far as I remember I was fine once I got off the mountain.

A doctor can confirm but no doctor has ever advised me that a HR of 110 or 120 while standing is dangerous. It might indicate dysautonomia (or not) but it is generally nothing to be scared of. Many of us have had HR of 160 or 170. My doctor treated me with meds for this, but he was not scared for my life. If you have SVT I assume you've had an echocardiogram and a full range of tests to evaluate your heart. In order to determine whether you have dysautonomia you'd need to stand still to see if your HR comes down. (If it really starts to go up and up and you feel uncomfortable, just sit back down.) I suspect that it will come back down if you keep standing still and that the walking does not make a difference. If you are worried or scared that is also probably impacting your heart rate.

Have you been diagnosed with Dysautonomia and or SVT? What happens when you stand for 10 miuntes without walking? Generally with Dysautonomia your HR goes up when you stand and stays up whether you are walking or standing still for 10 minutes it should stay up. Also you indicate you don’t feel symptoms and most of us feel worse-much worse - in an upright position. Though some with Dysautonomia have SVT, Dysautonomia itself involves normal sinus rhythm.

You're very right that the you can have dysautonomia without a positive TTT. But Shane he says that he can stand for hours without getting orthostatic symptoms - other than feeling initially lightheaded (which is what some normal, healthy people experience). The part about being ale to stand for hours without getting symptoms makes me think it isn't OH. People with OH and POTS have symptoms being on their feet for prolonged periods - maybe not all the time, but at least sometimes.

this question comes up a lot on the forum and you can read other peoples' experiences. Though it may start to work in 10 days it often takes longer to fully kick in.

I think you are right. 90/60 would be considered low for someone whose BP is normally 120/80 and vice versa 120/80 is high if your normal BP is 90/60. But generally doctors wouldn't worry if you are between 90/60 and 120/80 .

4-6 weeks is what I've heard. Requires a lot of patience. Be careful about increasing the dose too quickly because it's hard to taper off of this medication.

Autonomic neurologists specialize in treating dysautonomia. They are very rare. Most neurologists (who deal with the central nervous system) even really smart ones don't know about POTS. I wouldn't bother unless you are going to see them about a CNS issue. Cardiologists and electrophysiologists are much more used to treating heart rate and blood pressure issues, so you have a much better shot there.

There is definitely a connection between surgery and triggering POTS. If you google you should be able to find articles that you can show your doctor.

If you are generally fine standing it doesn't sound like you have trouble with vasoconstriction.

By the way, birth control would increase your blood pressure all the time, not just during your period.

Yes. Birth control helps with expanding blood volume and also helps if you have crashed around the time of your period, which many of us do. However, there are other drugs which are more effective in raising BP, including SSRIs, florinef and midodrine. You could also wear compression hose on days when your BP is low.

Improving my blood pressure helps with the lightheadedness for me. It is a direct connection for me between lightheadedness and brain fog/lightheadedness. Personally electrolyte drinks aren't enough for me. I need to mega salt load. I drink organic broth as needed. If blood pressure is an issue you could also look into compression hose.

There aren't really any experienced doctors in my area (which is surprising since I live in New York City). Can you find a good electrophysiologist or even a GP that is willing to work with you? Another thing which might be helpful is to keep a log of your BP and HR at home. If you make the connection that your BP is low when you are feeling dizzy you could supplement your BP, wear compression hose (which you can get without a prescription, etc.) If

If you didn't have a positive TTT how did your doctor diagnose dysautonomia? Why did he decide to put you on florinef (or give you a TTT in the first place)?

Plenty of people have positive TTTs with meds, but was trying to explain to Shane why the POTS symptoms might be mitigated by the medication - so he can't be sure that he doesn't have POTS based on the numbers provided on meds.

It's best to be measured and tested without medication. Medications like florinef, if they work properly, could move your HR and BP into the normal range. I assume your HR increased on the TTT even if your BP didn't fall and that you had the TTT before you started florinef.

If you aren't sleeping and feel like you are on overdrive your metabolism should be speeding up, not slowing down. Fevers are not a typical symptom of dysautonomia. Neither is rapid weight gain. I would not focus on dieting because if you are gaining weight with 1300 calories there is a medical reason for it. It would be more important to find that reason. If your current primary doctor is at a loss maybe switching doctors would help.

In Dysautonomia many of us have trouble maintaining blood pressure in an upright position. When you are lying flat, it is much easier for your body keep up BP because you are not fighting gravity. So it actually makes sense in Dysautonomia that you could get high BP while lying down. That is why people who take midodrine (which wears off in a few hours) don’t take a dose at night and why people don’t sleep with comorsssion hose on.

Your doctor should at least run some tests or something instead of saying I don't know.

I am not aware of a correlation between POTS and hypoglycemia. I am guessing it most likely relates to your diabetes.