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I would also mention that it is a normal response of the body to increase the heart rate when your BP is too low to adequately provide good circulation. It does appear that possibly many of your symptoms are due to the low BP. I don't know what other meds you take but it might be helpful to have your doc or a pharmacist review them to determine if any of them could influence your BP and need to be adjusted.

I had several holters - 24 hr, 48 hr, 30 days and then a implanted loop recorder that recorded EVERYTHING for 3 years until the battery ran out. The 24 hr one was the first one and actually recorded my very first syncopal episode: Sinus tachycardia in the 150's for 3 hrs. All the others showed tachycardia, PVC's (palpitations) and occasional atrial flutter ( not related to POTS ). The monitors are very helpful even if they do not show anything ( as long as you are symptomatic while wearing them ), because even if they are normal they help to rule out other things which helps to determine POTS.

Palpitations are usually harmless but very scary. I had them extremely bad in the beginning before I was on proper meds. Now I take a combination of meds which helped greatly. Especially beta blockers helped them, some more and some less. Which meds are you on?

hHas she had an endoscopy for the GI issues?

Hi - @Bluebonnet08 & @p8d - thank you so much for the encouragement. I have never thought about the possibility of research opening up new cures in the future, I guess that is where the defeat comes in. I will try to look forward to new things to come! And with that said - I am thankful to all those physicians who give their careers, time or interest to solve the many problems Dysautonomia patients face everyday. For now I am grateful for my docs and this forum ( and friends like you ).

Hi - I have a question: I am disabled from POTS for many years. Initially I went through all of the stages of grief and had resigned myself to the fact that this is a chronic condition. However lately the symptoms have become unbearable since they affect so many body systems: GI problems, bladder, pain, memory and concentration, fatigue, sleep disturbances, depression, anxiety ... you know. Plus I will never get better due to the nature of my POTS type as well as my age ( 51 ). So now I find that my previous acceptance has changed to resignation and defeat. Although I still do what I need to keep from developing flares ( exercises, diet, fluids, rest etc ) I really don't feel motivated because this is as good as it gets. Don't get me wrong: I am happy and feel blessed with my family, my life and the people in my life, I laugh despite of POTS. But many times I feel like I was cheated out of something, that I could have been so much more useful if I was not sick. -- How do I get back to the point where I just simply accept this condition and go on with my life without being resentful?

As mentioned by the members above: yes, indeed it WILL get better. I was in your shoes - I could not bear to live with the symptoms and the fear of them. The fight to find doctors that could explain what was wrong with me added to my dilemma. I was fortunate to have a excellent PCP who - even he did not know how to fix me - helped me through the darkest times, and still does. When you find a EXPERIENCED POTS specialist who can explain your symptoms it will feel like such a relief. Hang in there - POTS is not for the faint-of-heart! You do not have to be a hero - just know that there will be many good days ahead. The people on this forum understand because many of us went through the same thing.

I live in the woods - literally. There are only trees, fields, a creek, cows, deer, birds - it is a relaxing haven. But often it's like this: the birds are too loud, the creek is too constant, the wind in the trees is too annoying; the sun is too bright, the breeze is too cold, the outlook at my future is too bland because - the birds are too loud etc.... Stimulation overload is the ENEMY!!!! So I try to look at everything that I love, take deep breaths and try to remind myself that this moment is to be cherished, not tolerated. ( It does not always work though.)

Hi - I have hyperadrenergic POTS x 8 years. My mother ( in her 80's ) had the same symptoms but was never diagnosed. They did not know about it then. Recently my 2 sisters were also diagnosed with it. None of them have it as severe as I have it but nonetheless have many troubling symptoms and need meds to treat them. I have a teenage daughter who has had several episodes of pre-syncope in her life already. I am worried that she may have it, too. Do any of you have kids with the condition and what were the first signals of it that caused reason to you to be alarmed??? Thank you in advance for any response.

I am sorry that you have these issues. What I have noticed is tat ANYTHING can bring on dysautonomia symptoms. Physical or emotional stress, illness, temperature changes ( as in seasonal changes ), too much or not enough exercise, big or skipped meals (as you experienced) .... and then sometimes you just don't know what on earth brought it on. I also have orthostatic hypertension - but I have orthostatic hypotension as well. Depends on the day. I take Carvelidol, diltiazem, guanfacine in the way of cardiac meds. I tried other beta blockers but for me the carvelidol worked best. I find that sometimes I need to add a little more Carvelidol if tachycardia or palpitations get too bad but I try not to mess with my neds too much since I am trying to achieve balance of my ANS. I wish you the best .

@p8d - which meds help you with your joint pains?

When you go through an episode it always feels like your going to die. I am sorry that you have to go through this on top of being pregnant. Just remember that it ALWAYS gets better.

Well - anesthesia in my case always causes a flare. Plus - if we all could do all of the things that make us feel better or keep us from passing out or from doing regular activities we would all be on the same treatment plan. Dear Sonya - I will probably not be in favor with many people on this site but: life does not really go along with the rules of POTS.

First of all - you are pregnant, so all of your POTS symptoms will be much worse. Second - I have hyperadrenergic POTS. My symptoms were always similar to what all of us experience but My BP goes up when my HR goes up. Also - my norepinephrine levels were very high when they checked them with a blood test. I think it is best to just realize that we all have dysautonomia rather than categorizing it. The symptoms are all similar - it is just the cause that is different. We all go through the same thing - let the docs come up with classifications or sub-groups or whatever they might want to call their theoretic battles. In the end WE are the ones who struggle with the symptoms and they are usually pretty much the same, no matter what the label might be.

You definitely need to get your heart checked to rule out MI etc - however, what you describe sounds like it COULD be GI related, especially a peptic ulcer.

Dear physician - I have been diagnosed with dysautonomia. My blood work, EKG, CT scans and physical assessment may be normal and nothing may give you cause for concern. I may appear to be a perfectly healthy individual with no obvious reason for concern to you. However - I am very ill. All of the symptoms I am describing to you are real and I am suffering on a daily basis from them, some days may be better than others. Please do not dismiss me. I may appear to have symptoms that are similar to those of anxiety but please understand: they are real and they are caused by my dysautonomia. In addition to that please be aware that these symptoms can be quite scary - if you had them you would be scared too. I need you to listen to me and to take me serious, I would not be in your office if I did not need your advice. I do not expect you to know all of the answers but I do expect you to try your best to help me figure out a way to function and to limit the effects of these symptoms on my daily life. My illness may be invisible - but it is present in every minute of my life. Thank you for trying to improve the quality of my life.

I have severe pain in my joints every day as well, blood tests for RA or auto-immune causes have all been negative. I can not take steroids or NSAiDS or even painkillers. I take a good quality turmeric supplement which helps the most, plus I do exercises for my joints. I do believe this must be related to POTS but it also is possible that it is related to the inactivity due to dysautonomia. ( I am bedridden often ).

Sorry you are having such a hard time. Although your GI doctor sounds like he did not make you feel heard he is right by recommending a scoping. I have severe stomach issues from POTS and had several scopes which showed Barrett's, duodenitis and GERD. Only a EGD can diagnose that, plus they do biopsies that can show other causes of your symptoms. If they show nothing they can do studies like gastric-emptying or barium-swallow studies if necessary. But the EGD is the right step to take first. -- I know that it is difficult to deal with doctors that label you with anxiety being the cause of everything but as a GI doc he will look at your GI tract first, regardless of the suspected cause. If I were you I would follow his instructions and have the EGD.

I have hyperPOTS with too much norepinephrine and extreme vasoconstriction. My diastolic BP goes up like yours (extremely so before I was on medication). What surprises me is that your BP is so low - that can cause some of your cognitive and weakness issues. It can also contribute to the presyncope you experience and headaches. I'm stumped on that one. Sorry I can't be of any help but I hope you find relief and answers soon.

Well - I hope this is not the case for you but it sounds like either a bad bladder infection or Interstitial cystitis. Dysautonomia did that to me, it is a chronic inflammation of the bladder wall, causes all of the symptoms you describe and is not uncommon in dysautonomia. Either way - you should have a urine culture to rule out an infection. If it is IC then your urine will show blood in it. If your doc believes it could be IC then you should have a bladder scoping by a urologist, that would show the inflammation. Unfortunately there is not much they can do for that, you would have to go on a low-acid diet which helps me a lot. Please discuss your symptoms with your doctor - there is nothing to be embarrassed about. Especially since - if it is a UTI - it could make your dysautonomia much worse. Good luck - be well!

Sorry - Steven just made me aware that it is thedysautonomiaproject.ORG not .com. Thanks Steven and sorry to whoever could not find the site.

The Dysautonomia Project book explains a lot and is set up for you AND your physician as well as family members. You can get it on amazon or on thedysautonomiaproject.com website.

You go, Mama bear!! I do not EVER let anyone change my meds unless it is approved by my doc and me.

I am 51, had POTS for 8 years and I ALWAYS have a flare after even the slightest illness - even just a cold. Sometimes I need IV fluids to bring me around but mostly it is rest followed by slow reconditioning. In my case that means trying to get out of bed when able and then increasing the time out on my feet every day along with specific exercises that I can do in bed, then sitting and then standing. POTS flares are scary - even I loose hope sometimes and I get them several times a year! Just always remember that bedrest is your enemy - we have to move despite our exercise intolerance! -- Get well soon...

Thank you for this information, I signed right away.