Pistol

@MTRJ75 l personally have not experienced increased thirst with Lexapro. My M-I- L had Sjogrens, so I am aware of what it does to your body. Based on my experience with Lexapro I do not see why you would necessarily have to be concerned, but we are all different. I would say give it a good try, it did help me with hyperadrenergic POTS symptoms, and I hope it will do the same for you. Just know that you will not feel the effect right away, it takes weeks to start working in your body.

@MTRJ75 I take Lexapro, it takes a while to kick in. You will not feel like a different person overnight, it is more like in a few weeks you will realize that you are not a miserable anymore. At least that what I experienced, and literature will explain to you that it takes about 6 weeks to go into effect.

@Derek1987 my eyes and forehead hurt when I have a sinus headache from allergies. Could it be that? It is that season. ... You asked if Tylenol is different than aspirin - it also is a NSAID but is metabolized by the liver and does not have stomach side effects like aspirin and ibuprofen. My husband gets really bad cluster headaches and he takes Tylenol and caffeine for them, it helps him.

@Derek1987 it sounds to me that your doc gave up too early. I have hyperadrenergic pots and after being diagnosed it took my - renowned - autonomic specialist years to find the right medications. I had to try several beta blockers before finding the one that helps and also had to add diltiazem , a calcium channel blocker that dilates the blood vessels, as well as guanfacine, which helps with both brain fog as well as high BP. I also take Ritalin to help with fatigue and brain fog. To simply give up after trying a med once is not enough, good that you will be seen at Vanderbilt soon. Yes, you are young and may very well improve greatly - but there is also a lot that YOU will have to do. I am better on meds and IV fluids but I also have to be very aware of my body and take it easy, lots of rest and avoiding standing or walking etc, or I wil pass out, despite meds. I had to change my whole life to be able to function despite of having POTS. But once the meds made me more stable I was able to exercise and also have more energy which in turn helped me function more. Do not get discouraged just because your doc gave up on you - there are many more meds and treatments to try. Be positive!

@GinnyIckle I am not aware of anything like that being out there. I do best by taking my own manual BP and HR and writing it down, highlighting the abnormal values and presenting them to my physician. Please note that many digital BP readers are incorrect in their readings. Personally I have noted great differences between digital and manual readings, the Manual ones being the more normal ones. You could take your manual reader to your doctor’s office and have them compare your reading to the manual one they take. That may shed some light on this.

@Amyschi I have GERD and IBSD from Dysautonomia. My GERD at some point was so bad that I developed esophagitis and duodenitis. What helped me most are proton- pump inhibitors, in my case protonix. But when I was bad I also took carafate, Zantac and something called GI cocktail, which is a mix of viscous lidocaine, mylanta and phenobarbital. This mix healed the inflammation, stopped the GERD and I am now only on protonix and zofran. Also changing my diet to frequent small snacks rather than 3 meals a day and refraining from raw foods helped immensely.

I would like to add that SSRI, in Dysautonomia, are not used for the antidepressant action but rather for their usefulness of regulating neurotransmitters. Some people are afraid of taking them because they think they will be labeled mentally ill. I take Lexapro, since early on in my diagnosis. It has helped me a lot. I also find that many of us suffer — knowingly or not - from some degree of depression due to the symptoms we endure on a daily basis. SSRI’s will help with this human reaction as well. I disagree with @bombsh3ll that there are no studies regarding use of SSRI in Dysautonomia. It has been an effective treatment in regulating neurotransmitters for a long time and many studies have been done to prove that. It is a recommended treatment option in plenty of the literature published by authorities in the field of Dysautonomia in the US.

@MissMermaid ectopic beats are very common in pots and yes, they are harmless. They are a symptom of the overactive ANS. Beta blockers are the most commonly prescribed medication for this, I take carvelidol and rarely have them anymore. In itself they do not have to be treated but since you have pots your cardiologist may want you on a beta blocker anyway. Not all bb’s have the same effect on pvc’s, I tried metoprolol and bystolic before but they did not help as much.

@Scout yes, some women get more symptomatic during pregnancy and others feel much better while pregnant. There is an article about pots and pregnancy on the information site of this web site, you may find it helpful. There is no reason not to have children due to Dysautonomia alone, it does not affect the baby or the pregnancy itself, just how your body reacts to the changes, and that can be treated. I do recommend a high risk obstetrician only because you may experience changes in BP that may have to be addressed. Regarding your fear that the baby also may have Dysautonomia: POTS runs in my family, we have 3generations of women diagnosed with it. I have a 15 year old daughter and I am concerned about that, especially since she has already displayed some symptoms and she is hyper mobile ( which she got from her Dad ). But when I asked my autonomic specialist about it , he treats adults and children, he said that we only get 50 % of genes from our mother, so although there is a chance it is not a certainty. Don’t let Dysautonomia rob you of one of the greatest things in your life, you can absolutely have a safe pregnancy and a healthy baby.

Solitaire? I play games with my family by candle light, like monopoly or skippo Also radio talk shows can be interesting. Any type of cleaning helps - dusting, polishing, mopping ( if you are able to stand ), organizing files or going through closets or drawers and throwing out what is no longer needed .. doing laundry, light yard work with a wide-brimmed hat and sunglasses on a cloudy day, playing with your kids, cooking, washing the car in the garage ( or outside if it is cloudy ) ...

@Scout I wonder if this has something to do with the fact that many of us faint or get lightheaded when we raise our arms above our heads? I get faint when I shampoo my hair or hang laundry on the line.

It could be a musculoskeletal-skeletal issue. I get pains in my arms and shoulders when I have muscle tension in my neck. I go to a chiropractor to get adjusted when that happens and it always helps.

Yes, I totally agree with @edriscoll. Some times a cause can be found and maybe even corrected but in many people there is no treatable - or even recognizable - cause. In my case there are three generations of women with hyperadrenergic POTS but no underlying cause. We are all completely healthy individuals with a severe ANS malfunction. I personally do not waste my time trying to determine the cause, I try to find ways to deal with my symptoms. However - if there is reason to believe that a treatable condition might cause the Dysautonomia I would be relentless in finding it.

I agree with @DizzyPopcorn. I use ginger ale, the real stuff with true ginger in it, and it helps a lot. My mom steeps a bit of ginger root in hot water and drinks the tea for nausea.

I had this since childhood. The aorta is right there and things will flutter, move or pulsate if positioned on the upper abdomen/ lower chest. Harmless and normal in my case. I would like to add that when I was younger and leaner this happened more dramatically, not so obvious since I have gained a few pounds due to inactivity ( still normal BMI though ) .

Hello @cmreber, yes, I have hyperPOTS and ADD. I had two neuropsychological evaluation for brain fog and attention problems from POTS and they diagnose adult ADD. I have problems with concentration and memory, I get overwhelmed easily if I do more than one thing at a time. I was not always like that but since onset of POTS it is really bad. I take escitalopram ( SSRI ) and Ritalin for ADD. It really helps with the ability to concentrate and with fatigue/ low energy. I have no bad effects from it at all and it does not affect my HR or BP at all.

@KiminOrlando yes, many of my docs have this in their agreement but in my case they have always been understanding when I had to cancel short-notice and I have never been charged anything for cancelling. My husband actually had an argument with one of his docs about this and he also was told to sign it or they would not see him. But I see the same doc and he has not charged me when I had to cancel when I was too sick to go. I do think they should wife this in your case and I think this doc is wrong for making you agree to this. Sorry this happened to you 🙂

Hello @MissMermaid and welcome to the forum! What Dysautonomia were you diagnosed with? Coping with these symptoms is difficult, especially since our symptoms change all of the time. I too struggle with GI symptoms and in addition to protonix, Zantac and zofran ( for nausea ) I have found frequent snacks instead of meals and eliminating fresh fruit and veggies as well as acidic foods from my diet helpful. Palpitations are controlled with beta blockers in my case and the brain fog has improved with the use of Ritalin. What medications do you take?

Thanks @DizzyPopcorn - I needed that!

@MTRJ75 - definitely calll your doctor when his office opens, this BP is not OK. When mine goes u[\p like that I take extra BB as well and it often is enough to drop it. Be well!!!!

@MTRJ75 that sounds like a very reasonable approach, it is not a very high dose to start with. Your problems could also be caused by the simple fact that you are stopping one med and starting another at the same time. Just give it some time and be aware of what is going on with your body. In my case it often gets better after a while, but there were times I had to stop a med because I could not tolerate it at all. Trial and Error is unfortunately the way for most of us.

i recently had to see a Rheumatologist to get checked for autoimmune issues. I asked him about POTS being an autoimmune related condition, especially about these antibodies. he smirked and said it is just another theory. I had the distinct suspicion that he simply did not want to consider this possibility because he did not know anything about POTS and did not want to have to be responsible for it. ... I talked to a FNP who was writing a paper on POTS and had done a lot of research on dysautonomia. she told me that the autoimmune theory is becoming more and more studied and they find more and more evidence about it. However - as with anything POTS they have to have hard evidence to convince the medical community or else they get eye rolls. That might be a reason why there is talk about it and studies being done but as of yet there still is no hard proof of it. They are looking though.

@MTRJ75 -buboprion is often well tolerated by POTS patients and helps with many of our symptoms. I myself take Escitaloprm but my sister, who also has POTS takes Bupboprion and does very well on it. We are all different but I have learned to giv any new meds a chance. We are so sensitive - often our bodies need time to adjust to medication changes.

@DizzyPopcorn - as far as I understand there are many triggers that cause adrenaline to get excreted, normal orthostasis for example. Exercise, stimulation ... and this is in everybody. The problem with hyperadrenergic pots is that we either produce too much of it or it does not get cleared out of the synapse when it is no longer needed. Example: when we stand up the body releases adrenaline so the blood vessels constrict and HR goes up to push the blood up, since gravity forces it to sink to our feet. This process normally takes 1 minute and then the adrenaline gets cleared out by something called norepinephrine transporter. In some people this transporter does not exist, so the adrenaline just stays there and we get hyper and more adrenaline gets produced. And another reason is that the body just makes too much of it. There are other theories too but they are too complicated for me. @Random-Symptom Man I used to be a RN on a cardiac unit. I was very multitasking, worked well in a stressful environment and did 12 to 14 hour shifts. Today I am lucky if I can read the paper or remember to put the milk in the fridge. Yes, brain fog stinks and it is such a waste but it is what it is. POTS robs us of many things but not the ability to be present for our families and I am thankful for that. I cannot go to functions or shopping with my daughter but I can be her mother and that is most important to me. I used to grief over what I can no longer do but today I celebrate what I CAN do.

@Random-Symptom Man - I used to get hyperadrenergic flares at work and would lock myself in the bathroom, lights out, lying on the floor with my feet up on the wall. Yeah - darkness, quiet, hiding .... it all works. Anything to stop stimulation.