Gemma

Just got a call from my primary and he said to take a quarter every other day instead of half and the quarter every two days and then stop. Tapper in like a week and a half.

Thank alex. I am afraid to take it because of already jump in my bp. If i take it it will jump even higher. Dont know what to do. Waiting for a call from my primary.

Thank you for reply. I took it for 2 month. Does it mean I cant stop it immediately and have to tapper off. I am afraid to take another dose because its already high and don't want to make it higher.

Yes i felt really bad duing it. Lightheaded, chest pain, anxiety, hard to breath.

Hello everyone. I have been taking flurinef for hypotension for 2 month now. Even with flurinef my sitting BP was 105/55, standing 95/55. Couple of days ago i noticed sitting is 115/70. Yeastarday night it went up to 140/90, went to ER all results normal and send me home. In morning i noticed once i get up BP shoots up. So before it would drop now it shoots up upon standing. This gives me so much anxiety, scary. Can it be flurinef or something else.

Ohh i see. Did you have that test done. I might ask my cardiologist. My pain is not severe, its just like squeezing feeling on the right side above my breast. Its very enoying. My cardiologist and many others cardio docs that i saw said the pain doesn't present as cardio related. I just had dysautonomia test done at columbia university and received a call that results showed negative. If i do have dysautonomia than its either POTS or OI. Pain are very enoying and i wish it goes away. I started experiencing these chest pains when i first started Lexapro, then i was on xanax for 7 month and had pains all this time. Never had them before starting those meds.

Hi, did your friend have heart attack because of microvascular angina or othe heart problem? I just read about it and it says that it very rarely causes heart attacks. I also have those pains. Its mostly on my right side and feels like squeezing pain that comes and go. It scares me so much. It can happen at any time. I already saw4 different cardiologist for it and nobody found anything. I had 2 echos, stress test, echo stress test, cardiac ct scan, pulmonary ct scan, 24, 48 hr monitors, 10 event monitor, and many ekgs with all normal results. But the pain is still there. I suspected Pritzmental angina, but fo not quiet fit all the symptoms. Now since you mentioned microvascular, i suspect this. But i dont know if my cardio will take me seriously if i mention this to him. And does cardiac mri test for it?

Hi again. I just spoke to my allergy/immunalogy about getting tested for mcad and he said he can order a test for me to check tryptase levels (i think thats what he said). Is this a correct test that i need to do to get tested for MCAD or is there any other tests. He said people with mcad usually break into hives, which I don't have. I do have other symptoms like sensitive to a lot of meds, sometimes break into hot flashes, lightheadness and dizziness, chronic dry cough which nobody can figure out what it is from, fatigue everyday. Well he agreed to test me for it. Any advise on the testing please. Thanks everyone.

Hi katybug. How did you get mcad diagnosis. Can my regular allergy/immunology doctor test or it, or it has to be someone who specializes in it? Thanks.

Hi KMS. I actually saw Dr. Goodkin yesterday for the first time and liked him a lot. He knows a lot about POTS. Also, I liked that he has close contact with patients, he provides his cell phone so you can be in touch with him. I actually called him today for am advice and he took his time to talk to me, which is very nice considering that I saw him only once. He also, referred me to see Dr. Bellew. I called yesterday and they had a cancelation for today so they put me in. How long it took you to get an appointment with him? And did Dr. Goodkin refer you to him or someone else. Well anyways, today was my first visit with him so I don't know if there is any improvement yet. I don't think one session will do anything, of course I wish for a miracle but I know its not happening. He seems to know what he is talking about. While performing manipulation he explained everything that he was doing. I am in Physical Therapy school, so everything that he talked about made sense to me. However, I don't understand the the fluid manipulation treatment. I am on my first year of PT school, so didn't get to the manual therapy part yet in school, only slightly. I know PTs do similar manipulation treatments for muscular injuries, but he says that by performing manipulation he is shifting the cerebrospinal fluid to the right places and I don't understand how by just slightly touching me he is able to do it, but you never know. Dr. Goodkin said that it helped many of his patients so I decided to try it. It is expensive though, so I am not sure how many sessions I will be able to afford. I called Dr. Goodkin this morning before my appointment and asked if he can recommend someone else who takes insurance, but he said, there are very few doctors who know how to treat POTS and dr. Bellew is the best he knows so far and that most of this doctors do not take insurance. I went online and found a whole bunch of ostheopatic doctors, but most of them are just regular family doctors and do not do this kind of treatment, so I decided to give it a shot. I started feeling pain in my neck and my lower back, so I guess something is happening, and I am hoping its a good thing. I read online that people do experience pain first few days after treatment and then it should subside. It feels like someone did a deep tissue massage for me, but during session he only barely touched me. I will keep you updated if i see some changes. I was hoping that people who saw him could reply, but nobody did, so maybe they were all cured

Hmmm, thats interesting. What did the doctor say about it? Maybe do it again. I had it done 3 times, 2 times at allergy doctor and one time at pulmonologist, all normal. What about your lungs, are they normal. My grandpa was showing low results on those pulmonary tests, but he had emphysema. I am pretty sure thats not what you have, but i thought pulmonary breathing tests are to see lung capacity. I though they use some other tests to measure your muslce function, but I might be mistaken.

Hi spinner. I had endoscopy done, so I guess that checks for gerd, and alsoI had an ENT doctor put a tube thru my nose to look at my vocal cords, so I assume that one checks for laryngeal reflex. Am I right? Are there any other tests that check for it. So far for my cough I had those two done, then a methacholine chalange test to check for asthma and also those regular breathing tests that they do in the office where nurse asks you to push as hard as you can when you breath out. Do you know of any other tests that I can maybe ask my doctor to do for me. Thanks.

Hey dkd, which pulmonary test you are talking about. Is it the one where they tell you to breath in a tube and then the computer measures your lungs capacity. Or is it some other test you are talking about.

Hi everyone. Do any of you have chronic cough. I have chronic cough for a year. Had pulmonary ct scan, pulmonary tests, and methacholine challenge test (to check for asthma). All negative. Also, had skin allergy test done and nothing. Have been checked by ENT doctor and all he saw was a little redness of my vocal cords, so was on Nexium for acid for 2 month, but still cough. Its driving me crazy. Sometimes i feel like i have to cough to get my air out. Also, sometimes feel stabbing chest pain when I inhale deeply. Pulmonologist doesn't see anything wrong with lungs or bronchus. ENT doctor recommends to do bronchoscopy, but I do not understand whats the point if I had pulmonary ct scan done and there was no obstructions.

I am 31, symptoms started 8 month ago.

Hi Katybug. Thanks for reply. I really want to see this doctor, but he doesnt accept insurance and his first visit is like $250. With all my medical bills and my husband the only one working, its very expensive for us. But i am willing to try if it could help somehow. I am pretty sure there are other ostheopath doctors around my area, but i dont know if they work with pots patients. The doctor that refered me says he is working with pots patients and have seen a lot of improvement.

Hi everyone. I know this is an old post but i was just recently referred to see Dr. Bellew. Dr. Goodkin says he helped some patients. I want to try him, but he is really expensive so I wanted advice if it is worth the money. Also, does anyone know if any ostheopatic doctors accept insurances or all of them just take cash. I live in philla area and found other ostheopatic doctors, but not sure if any of them accept insurance. Thanks.

Hi everyone. I was referred to Dr. Bellew by the cardiologist that I saw today. I called to schedule an appointment and they had a cancelation for tomorrow and i took that spot. I never heard of ostheopatic medicine, but Dr. Goodkin says he saw good results in some patients. This doctor doesn't take insurance so its a little expensive, but I am willing to try it. I wanted to know if anyone had any benefit from it. Also, does anyone know if any ostheopath doctors take insurances or is it the same as with holistic doctors not excepting any insurances. Thanks everyone.

I also had vaccine done right before my symptoms got really severe, i had a T-Dap done for school.

What kind of meds do you take before you have ct scan done? My cardio doc wanted me to do ct scan of the heart for my chest pains, but i am afraid to have a reaction as before. Do i have to ask him for the meds before the test? Also, do you think that the dye from ct scan could have provoked my symptoms of hypotension and could i still have them after 4 month. I sometimes blame it on the ct scan but its been 4 month.

I live in PA, philadelphia area. I am not sure if I have mast cell disease, but some symptoms are similar. I am very sensitive to most drugs. Can't take bata blockers at all, tried 2 and had really severe cough from it and also made me feel like zombie. I was never sensitive to meds before, but now i am sensitive to most. Also, I have developed this chronic cough a year ago and its not going away. Its just like a dry cough, feel like need to cough out air or something. It subsides when i go to sleep, but gets more severe while walking. I have been tested for asthma and don't have it. Ent and gastro docs thought its acid, so i am on nexium for past 2 month, but still cough. It subsided a little, but then this new neuro doc that i saw wanted me to try atanolol for chest pains and my cough returned and is not going away. I feel like its bronchospasms or something. I started with cough last August of 2012, then in december of 2012 got very sick. I thought i was dying. Since then still no answer of whats going on with me. Also in April i had a pulmonary ct scan with dye done and after that i started experiencing really bad symptoms of hypotension and elevated HR upon standing. I read online that people with mast cell disease, can react to dye like that. So i started wondering if thats what i have. Its been 4 month and i still have problems with my bp being very low and increase in hr. I wonder if ct scan caused it. Before ct scan i was fatigue, lightheaded, just feeling very sick overall, but after ct scan problems with hypotension and hr started. Well anyways thats my story . I sometimes get really scary when i have bad episodes with my cough. I do have albuterol for just in case situations, but i do mot have epi pen, and sometimes get very scary that i will get some really bad allergic reaction or something and will not be able to breath. I think i really want to be tested for it. I will keep you updated with the info that my doctor recommends. Thanks for your recommendations.

Forgot to ask. So to be tested for Mast Cell disease, which doctor I would have to see? Thanks.

Hi Issie. Thanks for reply. My renin was 1.88, which is within norms. But my aldosterone showed low on 2 blood tests and my cortisol is always high. I looked into Cushings syndrome, but it doesn't really fit with my symptoms. I would say addisons symptoms are more similar to what i am experiencing, but for that cortisol needs to be low and mine is high. My primary doctor wants to try some natural herbal treatment for this, some Chinese medicine. He said he will email me the info about it. I don't even know what to think anymore. I started feeling bad last december and still no real answers from doctors. I hope one day somebody will be able to tell e whats really going on with me. In the meantime i am finding all the info on this forum and thats how i get doctors to perform different tests for me. Thanks.

Hi Issie. I was reading your post where you mentioned something about low aldosterone. 2 times my blood results showed low aldosterone, but my cortisol is high all the time. I spoke to 2 different endocrinologists about it, but they do not seem to be concerned. They say that because my ACTH chalange test showed normal cortisol levels, then i am fine. But 3 times my morning cortisol was very elevated, almost double. They says its probably due to stress of giving blood, which i know is not the case, because i had blood drown so many times in the past 8 months that i dont even care when they stick a needle in there ( i am sure all of us here dont care anymore). Also my aldosterone is on a low side. One time it was 6, this last time it showed 7. I spoke to my primary doc and he is concerned with my adrenals, even though the 2 endo docs dont care for it. My primary says that they go by the book, and if its not too much out of range then they dont care. He says i need to focus on my adrenals, because he belives most of my symptoms are caused by it. Also he says that since flurinef makes me feel better and its a steroid mean that my adrenals are not functioning right. Does anyone can give me some info on what i am dealing here with. Also how do i get tested for mast cell disease? Thanks.

Hi everyone. I was reading everyones messages and have a question. I dont have an official diagnosis yet. I definetly know I have some type of dysautonomia, but not sure which type. Can someone explain the diference of. Just POTS amd hyperPOTS, and maybe there is another one? I usually have low blood pressure, standing 90/55 with HR of 90-110. My sitting BP is 106/60 and HR 60-75. I feel lightheaded most of the time during the day. Had sudden onset of symptoms last december. Would my symptoms indicate I have just POTS? Thanks.