Gemma

Yes, I did read that its so hard to diagnose it. I don't even want to tell my primary about it, because he will look at me like I am crazy. Last time he said I have to stop going to doctors and waist my time and money. I wish sometimes that they live our lives for a week at least and see how they can just sit home and not do anything to help find the cause of illness. I do not want go give up and be disabled forever. My whole life was put on hold because of it. I can not go back to my graduate school, I can not start having kids. All I do is sit home, and then he tells me to stop looking for an answer. That is so unfair of doctors to treat us this way. I called my neurologist that takes care of my POTS case and left message with his assistant to see if he can refer me to someone who knows about POTS. Doctors that don't have much experience with POTS dont believe that we actually feel the way we feel.

May I ask how you were able to see participating physicians on the website you mentioned about. I cant find it there. Thanks.

Thank you so much for the info. I started thinking about MCAS after i tried 2 different beta blockers and got really bad cough from them, almost like asthma attack. Then i was put on NSAIDS and again flare. Also another flare with yeast infection medicine. I have never reacted like this to meds before. I think if i mention it to my primary he will again say that i dont have it, like he says to everything. Lately i just go to specialists and not really discuss it with my primary because he just wants me to treat symptoms and stop looking for couse. And i am honestly done with unneeded med intake which were only making me worse.

Hi icelizard again. Thank you for info. I am also so sensitive to most meds and some supplements. I have something weird going on. My blood is showing gluten sensitivity, but endoscopy biopsy shows negative for celiac. Also, my ANA shows positive, but rhemotologist says no lupus. Also, my WBC counts ads always high, meaning some inflamation is going on and my sedementation rate was also elavated. My symltoms also include lightheadness, drops in BP and increase in HR, often palpitaions. Also, I have chronic dry cough for the past year. I have noticed that I cough more After I eat. Was tested for asthma and regular allergies, all negative. Also, when i take beta blocker i start caughing. Well anyways, so many weird things going on, but doctors dont know what it is. A week ago, I took duflican and also started on NSADs for chest pains due to costochonditis, and boom very bad flare of symptoms. Last whole week I felt so lightheaded and fatigue. So yestarday i went to rite aid and got zyrtec and today i feel batter, not so much fatigue and also less drop in standing BP and less standing HR. I did ask my allergy doctor about MCAS but he said that i dont have it becuase do not have any rashes or hives on my skin. But I read online that you are not supposed to definetly have it. My symptoms are not associated with skin issues, mine are more fatigue, lightheadness, dry cough (feeling like bronchos are spasming). I did have reactions to meds, and had couple where I had really bad palpitation, feeling like will faint, and got red spots all over my neck but went away after like 10 minutes. Do you have any suggestiin which doctor I should see for this condition? I think my regular allergy doctor do not know how to proparly investigate this condition. He did run the tryptase test and thats it, and it showed negative so he said I dont have it. Also, did anyone prescribe zantac and zyrtac for you, or you just trying it out yourself? Thank you very much.

Hi icelizard, i dont know what my dysautonomia is due. How to check for mast cell disease? I saw people on here wrote something about taking H1 and H2 meds, what does it mean and what meds are those?

Thanks all for reply. I was actually feeling really good for almost past 2 months. I dont know what happened and why i started feeling bad again. The only thing that changed was that i started taking NSAIDS for costochondritis. And also took Duflican for yeast infaction. I dont know if its from the meds. I just wanted to know if people here also experience flares like this.

I was taking nabumetone, its like a prescription Motrin that my rheumatologist prescribed for inflammation. I have been having chest pains for over 4 month which are triggered by different movement and she suspected chostochondritis, so prescribed NSAIDS. When i started them i was ok in the beginning, then noticed more fatigue, then lightheadedness, then hard to stand feeling. I told my husband something is going on, either its due to meds because I am very sensitive, or it is its just a flare. So, getting flares like this is common? I thought someone on here wrote before that if we start to have windows when we feel normal and then flares, it means we are healing. Is this not true?

Hello everyone. I wanted to ask if many of you have on and off flare of symptoms. For couple of month I was feeling like I am on a way to recovery. I still had symptoms, but they were not as severe as before. I was able to do so much more compared to before, like in one day I was able to clean, go shopping and walk with a dog. Before it was hard for me even to make breakfast for myself. My symptoms of dropping blood pressure and elevated HR were almost gone. It was much easier for me to stand in one place. I was feeling at 70-80% back to normal. Also, i have to mention I was not taking any meds. Now this past week, my symptoms are back. I cant stand or sit for long and have to lay down to get a relieve. I am lightheaded again, feel pressure in head like not enough blood flow to my brain. Also, very severe fatigue is back. Basically I feel terrible if not worse then before. If someone experiences flares like this, can you please share your experience and why it happens. I am so scared that its going to get worse then even before again. Its even hard to keep my body upright. Also, I forgot to mention, right before I started feeling bad, I started taking nabumetone (like a strong dose of motrine), that I was given for chest pains which doctor said is inflammation and possible chostochondritis. Well, after I started the med, I started getting that fatigue feeling again and like it is very hard for me to stand. I though, ok so maybe it will only last a couple of days. Well its been more then a week and not going away at all, only worse. I dont know what to do. Could it be a flare, or am I getting worse after a good window. Thanks all.

Hi username. I am a patient of Dr. Weimer. I live in philadelphia but see him because not many docs here who deal with POTS. Let me know if you were able to see him and how was the appointment.

Thank you. Did your doctor know what tests to order? Mine just referred me but didn't indicate the testing?

I called the autonomic clinic, and they said they try to schedule whatever doctor I need to see within the time frame that I am there, but she is not too sure about it. My husband keeps on pushing me to ask them to make sure that they will definetly do tests for me. He says I don't want to drive there for 12 hours just to see a doctor. How was your testing ordered? Did your referring doctor order some tests before? For me they said I will first need to see their doctor and then she will decide what tests I need to have and if she decided to do tests then they will do them either that same day or next day. But, I am afraid what if she decided not to do any tests, then I drove for 12 hours one way for no reason. Thanks.

I tried chiropractor as well, but didn't really help my symptoms. Lately, like past 3 month I started feeling better over all and have on and off flares. So, maybe what you are feeling is on and off flare of symptoms. A lot of people here say they have windows where symptoms improve and then have a flare. I was feeling much better last 3 weeks, but now this past week feel really bad. I am hoping it is one of the flares. Before I was like this every day, very fatigue to the point that I could even make breakfast for myself, severe lightheadedness, fogginess, feeling like its really hard to stand and need to lay down to relieve the symptoms. I also, felt really bad head pressure, like not enough blood flow to my brain and wanted to lay down to relive this symptom. Also, sometimes I feel like the blood is collecting in my abdomen and not going back to heart and brain. It is a very deliberating condition. I also do not know what else to even try. Different meds made me feel even worse. I also, tried osteopathic doctor who did manual therapy on me, but it was too expensive, like $180 per session and I could have afforded only 3 sessions. After manual therapy I thought i am getting better, my fatigue started to improve, as well as my lightheadness. However, at the same time as I did therapy, I got off xanax, and I think a lot of my symptoms were from xanax use. So, I cant really say if therapy helped or stopping xanax. I currently take no meds at all because those that I have tried made me even more sicker. I also need to return to school in May, and I have no clue how I will be able to manage it. Its a graduate program, so very hard and with this condition its probably will be impossible. Hope you do improve and chiro helps, but be careful.

Yes, thanks for sharing.m

Does anyone have any info on Vanderbilt, please. Thanks.

Hi everyone. I have appointment at Vanderbilt autonomic clinic in couple of weeks. I will be driving there and its a long trip, 12 hours. So my husband needs to take time off work to drive me there. Does anyone here have any information about the clinic. If anyone visited clinic please share your experience and if you have any sugestions. They said i will first have appointment with their doctor and then she will decide what tests if any they need to do. When i called I was told that usually they try to schedule tests same day or the next. I just hope they operate same way as Mayo clinic does and do everything while you there. I wanted to also see their rhematologist for the chest pains that I have been experiencing for past 5 month. Rhematologist here told me my ANA is elavated and sedimentation is elavated, so i have some inflamation going on. She thinks its costochonditis. I was wondering if I go there and want to see another doctor, how to arrange this , so I can see another doctor during the time I am staying there. Does anyone have any suggestions? Thank you.

Hi. This question is for women. I need help. I am going thru clomid chalange test now. And tomorrow will be checked to see if I am ovulating. The fertility doctor said I can do it either with or without HCG shot. Did anyone here get that shot? And can we get it with dysautonomia? Thank you girls.

Hi girls. Did you also get n HCG shot for pregnancy? Can we get that?

Hi all. So lately I tried amytriptolyne. It seemed to help a bit with anxiety and made me a little less fatigue. However i stopped it because got afraid when woke up couple of nights with more chest pains. So now I want to try zoloft. Did anyone have success with it and does anyone know if these meds actually help dysautonomia or just anxiety that comes with it. Thank you.

Hi girls. I see many mention here that they are hypovolemic. How do you know you are hypovolemic? Were you tested somehow for it? Thanks.

Hi. Did you take any hormone meds? I was also yold that too much cortisol can lead to cushing syndrome. This info told me holistic doctor. I havent followed up on my cortisol levels yet. I think mine was elevated due to anxiety. I noticed my anxiety is out of control and I think i need to start some antidepressent ti calm down. I was trying to avoid those meds because went thru really bad time withdrawing from xanax. But i think i need to manage it somehow. My chest pains are really bad and each time i have them it turns into a panic attack. Aks you doctor to also run 24 hour catecholamines tests, that includes coritsol and aldosterol and others. Also, make sure you cortisol needs to be drawn early in the morning, i think before 8 am and empty stomach. Also, when you do 24 hour urine test for hormones and blood test for hormones you can not be on hormone therapy for some time. I had to be off flurinef to do that test. Sorry, dont have any new info for you, but hope some of the above is helpfull. Also, holistic docotor checked some extra thyroid tests, like reverse t3 or something, lyme disease, also, insuline resistence test (which was almost on border line and I am retesing it now). Insuline resistence can also be elevated due to body going thru a constant stress. Ohh, our condition is so complicated and so much is uknown and we always trying to find what caused what, but after so many docs visits, so many nights of researching stuff, I still dont know why this is happening in my body. Sometimes I just feel like i want to stop searching and just wait for a miracle to happen.

Thank you very much. I will check it out.

Knyomo, were you able to recover after you got symptomatic first time after 1st pregnancy? Also, are u currently on any meds?

Hello everyone. Need help with this new med. Recent cardiologist that I saw recomended taking very small dose 10mg of amytryptoline for 2-3 month. I already heard it from another cardiologist but didn't follow his treatment plan so never felt on the med. Due to recomendation of this new cardio doc I started the med 5 days ago. Anyone here tried this med and did it help at all with symptoms. Also, I am experiencing chest pains almost everyday, which all cardiac docs say its not cardio related based on my numerous testing. However, I read that Amitryptoline can cause things like heart attack and some heart blockage. It scares me a lot because I already experience chest pains. I questioned this from the doctor, but he said it is not advisable to take this med in certain patients who have some prolong wave on EKG and who already have some heart problem and this doesn't concern me at all. But I am afraid what if the pains that I experience are due to microvascular or Pritzmentals angina. I am not on amy beta or calcium channel blocker. I was thinking about trying calcium channel blocker to see if it helps with chest pains. So, now I am scared because online it says that crushing chest pains are severe side effect of amitryptoline. I did have chest pains before going on the med, but now since being on the med and having these pains how would I know if its due to med or just my usual pains. I also withdrew from xanax 9 weeks ago and still think I am going thru withdrawals and chest pains can be one of them. This is so confusing. I really want to give Amytryp a chance and see maybe it will help my disautonomia, but so scared. If anyone knows about this med or tried it, please share your experinece. Thanks.

Hi, loulou, where would I find those discharge papers for the student loans? I wish I would be able to go back to school and get my degree, but so far its not looking good. I need to start school in 6 month and I am no near recovery. They will start sending me bills soon and it scares me. I know I can defer it for now, which means the interest will be accumulating, but I don't have to pay for now. But i don't know how long I will have this option. If they find out I am not coming back to school at all, they will want me to pay. My husband is already paying for everything, house, cars, bills, food, my insurance and all medical bills. We cant afford to pay student loans with one salary now. I know many of you are in similar situation probably, so any advise would be so helpful. Thank you all for help.

Hi Kay thanks for advise. Were you on meds when you got pregnant and then stopped when found out or did you stop all meds before getting pregnant? Did pregnancy worsen your condition? A lot of doctors told me that i might actually feel better during pregnancy, but I read on this forum that many women felt worse during pregnancy or right after.