Gemma

Hi. I also have number 1 and 3 on your list. I still didn't have a test for vertigo, going next week to do it. However, my Neuro said its common in POTS, he called it rocky feeling. Its very enoying. Sometimes its hard for me even watch TV because of this feeling. I also sometimes get it while laying down as well. What ENT tests did you do? Also, are you supposed to have lumbar puncture to check for MS if my 2 brain MRIs came back totally normal?

Hi everyone. Thank you for reply. Lulusoccer. Yes my HR does increase by more then 30 bpm upon standing and it stays that way. Although it is worse in the morning, towards the evenign it gets better something. My sitting and laying HR is around 60-80 and my standing goes up above 110. However on my good days my standing could be in high 80s, but this doesnt happen often. Also my BP epesially systolic drops to high 80s or low 90s. Is it possible with POTS to sometimes have good days when HR doesnt go up as much. I also noticed that when i stand in one spot HR goes up more then when I move around. The hardest is standing in one spot. And no they didnt redo the TTT for me. They did autonomic function test, where I laid on bed, then did breathing in tube for Valsava, then brought table at 70 degrees and stayed there for 10 minutes. This one was normal, but I was also feeling normal during this test . Also, the technician kept on having converstaion with me thruout the test, could it change the results? Was i supposed to stand still and not talk? Also, my blood volume was mostly within norm range. But my cathecholemines test showed some abnormality. These are the numbers: Laying Epi 20pg/ml (norm 10-200), NE 446 (norm 80-520) Standing Epi <10 (norm 10-200), NE 792 (norm 80-520) So, as I understand it, my Epi went down a bit and my NE went out from laying to standing. Does anyone know what it means? Is this what happens in POTS patients. Also, based on this will SSRI be a good fit med. My doctor here locally said that based on Blood volume tests it looks like fludo will not help much with my syptoms. He suggested still wated and salt. First he put me on calcium chanel blocker to help with chest pains and see if its related to vasospasms and also said will help with my HR, i take Verapamil. If this doesnt help I will try birthcontrol pills to see if its hormonal, although my hormons are normal but there are slight abnormalitis with progesterone. Now, if those dont help them will try either zoloft or paxil. But my concern is, if my NE goes up upon standing can I take SSRIs? The doctor at the clinic where I went didnt suggest anything at all. She basicly just wrote me off based on my negative autonomic function test. 15 hour drive and over $1500 in spending for hotels and gas was waisted. But at least I got to do the tests. But now do not know what to do with them and the doctor from that clinic is not even calling me back to go over them and the manager is ignoring my calls as well. If anyone can make any sence of this, please respond. Also I am thinking if asking my cordio here locally if he can repeat TTT, is there any specific I should ask for or just regular TTT?

I did go just recently. You can PM me and I will tell you my story.

Can someone suggest which Mayo clinic location is better at diagnosing POTS. And also where you can be seem by other specialist while there for other conditions. Thank you.

Yes I do monitor my BP and HR at home. It does drop to around 85-95/50-60 upon standing and HR goes up over 110. This especially happens in the morning when I wake up and start walking. I get palpitation, fatigue, hard to breath and all other POTS symptoms. All my doctors say that is what I have. However, my testing at this clinic (not sure if I can mention the name), showed negative. Only my catecholamines were high upon standing. A doctor that I see in NY for POTS says that he believes I have it and all my symptoms and signs show for it. I had many times recorded low BP at doctors visits as well. I think I need to ask my cardio to redo the Tilt table test. Mine was done over a year ago when I was just sick for like 2-3 month. I never fainted, but started to feel faint with nitro pill. I do not know all the recordings from it, but report says, Positive TTT for vasovagal response with introduction of nitro pill. They were looking for orthostatic hypotension back then not POTS. I don't know what else could be causing my symptoms. I was checked by everyone already, 5 different cardiologist who all think its POTS related, neurologists, rheumatologists, endocrinologist, pulmonologist. I don't even know where else to go and what tests I should ask for. Is it possible to get negative results on autonomic testing but still have POTS. I also want to mention that I was feeling relatively good that day when they did a test. Thank you all for support.

No, not really. So, if all testing is negative exept catecholamines, could it mean my problem is not autonomic dysfunction but something else. My local doctor that I see (not so local 2 hrs away), says that he disagrees with the clinic i visited, because testing can show false negative. He says my symptoms and signs do represent POTS. But I could have had a good day on the day of the test. Its very confusing when testing shows negative but have all the symptoms of POTS. Sometimes I am questioning anxiety, especially when most doctors that are unfamiliar with POTS says its just anxiety. However my life was totally stress free for the past year. I took a leave of absence from school for a year and just stayed home. So, my question is, can I still have POTS even though most of my tests are normal, exept catecholemines, but I do have all symptoms. Thank you everyone.

Hi. I am a little confused. My neurologist said that based on testing and symptoms I mostly fit a hyperadrenergic POTS. I thought patients with hyperadrenergic POTS had high BP upon standing, mine drops upon standing. So, my question is can person with hyperadrenergic POTS have low standing BP? When I stand it usually drops to 85-95/50-65. My sitting is 105/55-65. But sometimes i could have standing 112/70 or so after I do some activity, but this is very rare BP reading for me but does happen. Please help me understand why the doctor suggests I have hyperadrenergic POTS. All autonomic testing within normal limits; blood volume a little elevated, red blood cells a little low, plasma a little elevated, qsart negative. But my catecholamines (NE) is elevated standing and normal laying down. Thank you all.

Hello all. I just got my results back from the clinic that I recently visited. I really need help understanding it. If anyone understands it please respond. So, this is what it says: My plasma volume test showed that my red cell volume is slightly decreased, but total blood volume and blood plasma is minimally increased as compared to ideal but remains within normal range. The catecholamines (NE) are normal supine but mildly elevated on standing. Recommendation says to investigate anemia. Also says that increased water, salt and fludo can decrease some standing symptoms but my laying down and sitting rocky boat feeling will not be helped by those. Qsart is normal also, so was told no small fiber neuropathy. ( is this test enough to eliminate small fiber neuropathy or need biopsy?) Also, my ANS test showed normal. I am so confused. Looks like most of my testing is within normals, exept the NE levels, but I still experience a lot of dysautonomia symptoms. My local neurologist says that he is looking more at my symptoms then testing and based on symptoms and on catecholamines test I do have dysautonomia. He thinks I have Hyperadrenergic Pots. If anyone understands what all of this means please let me know. I am so confused why I am showing negative on tests, but have all the symptoms of POTS. My autonomic testing showed negative two times already. Also on a tilt table test a year ago, i never fainted and i think my HR went above 100 only a little bit. Maybe I should ask them to redo it.

How do you check for seretonin levels, and what else needs to be checked, like dopamin or something. I wanted to start SSRI but not sure what my levels are. I read here somewhere that if levels are already high then SSRI will make it worse. So, what do I have to check and how? Thanks.

She is 2 hours from me. Which is probably not that bad. I will call to see how long is a wait. Did she do testing for you.

Thank you. I will check her out.

Hi. Can anyone recomend any doctor who specializes in MCAS around these areas: PA, NY, NJ, Maryland. Somewhere within like 5 hour drive from Philly PA. Thank you everyone.

I just went to a big clinic here in us and was told by the doctor that i probably do not have any dysautonomia at all, and that my problem probably lays somewhere else, like endocrinology, or mcas. So, now i guess i have to look more into that.

Hi little. Welcome to the forum. I am not sure about Canada. But there are some docs in US that deal MCAS. Ice lizard posted a few sites on first page of this topic that has list of doctors. I noticed that docs that deal of mcas are mostly immunologists, or hematologists.

Ohh, so sorry tachyfor50years. It must have been devastating to be there alone and experience this. I have calmed down a little. I am so happy I went there with my husband and my dog, this way we made it like a road trip and stopped at a few interesting places on a way back. Will be home soon. Cant wait. Thanks all for support. I really, really appreciated. Today was a new day, good weather and I am glad God gave me strength to visit some new interesting places on a way back home. Life is beautiful .

Thank you katybug. I found a webcite called department of health of the state where I was. It has an option there to file a complain about clinic or doctor. Is that the same as medical board that you mentioned?

Hi all. I am just coming from one of the major clinics that deals with POTS patients, but it was such a bad experience. I am only happy I got some testing done, that was already prescheduled by my local cardio doctor. I got nothing out of my appointment with a doctor. All she said that my autonomic test showed negative (i was actually feeling good that day), and that she thinks I do not have anything going on with my autonomic system. She based this dicision on one test and didnt wait until the results for other 3 tests come back. Also, for my chronic dry cough she said to go back to my pulmonologist and let him investigate it. I asked to see pulmonologist at their clinic, but she said no. Also, i mentioned to her my symptoms that could relate to MCAS and asked if i could be tested here or seen by their immunologist but she said no again and said to see a local one, even though I told her there are no local immunologists that deal with MCAS. She didnt even want me to see cardio doctor there for my chest pains. This is so upsetting. I cried so much after my appointment. We drove 15 hours, hubby took 4 days off work, spend over $1000 on a trip and it was so upsetting. I complained to patients relations and also to manager, but no success. Manager said that doctor said at this point just eat salt and drink water and if symptoms progresa come back in a year. Thats is a funny recomendation. Sorry for the long post, I am just still so upset. So, anyways. Now I am thinking of scheduling appointment at Mayo and wanted to know what location is considered best for diagnosis and also for trying to figure out the reason why we feel this way. I have other things going on like chronic cough that developed right before my POTS symptoms. Also, have everyday musculo chest pains that dont go away and have had them for past 5 month. So, i wanted to know in what clinic you are able to see other doctors, like ednocrinologist, rheumatologist, pulmonologist at the time you visit the clinic besides just POST specialist. I had a Mayo appointment but in florida, but cancled it because was told that they do not specialize that much in dysautonomia. But i already had all my testing for POTS done here in this other clinic that i visited, would it be beneficial to go to florida or should I go to another location. I do not want to have another bad experience like I just had. Please recomend the clinic and maybe some good doctors so I can ask for them. Thank you all very much.

Ok. So to keep you all updated on this whole issue at the major clinic. Nothing was done the manager. Yestaday she promised to show my case to another doctor to review and also was going to try to get me an appointment with another specialist for other problems i had. She said she will call us by noon, because we told her that we need to know wether to check out crom hotel or extend our stay. So obviously she didnt call, we had to check out. We called the office to aks to speak to her but were told she will call back. 1/5 an hour later she calls back and says that she spoke to the same doctor that I saw and complained about and that the doctor said that nothing needs to be done at this point and that if my symptoms get worse I should come back in a year. Seriously, i am sick for over a year and a half, and she tells me to wait and see if I get sicker to come back. This is just so insane. I dont even know how to express my anger and my emotional pain.

I would probably not be as upset if I havent came here from so far. 15 hours drive even though my husband drove is so hard, and all of POTS people can understand it. I spoke to patients relations and they are trying to contact office manegers to see what can be done. I am happy we took our dog with us, at least that cheers me up . We rented a condo here to make it a little more fun, like a vacation road trip with a benefit of visiting clinic, so at least I dont feel so down . Thank you all so much for your support!!!

I agree the clinic is organized and the staff is nice, but the doctor is really bad.

Ok, so I just called the clinic to make a complain and was told by the lady there that the Doctor that I saw is leaving the clinic. No wonder she didn't care at all about me as a patient. This is so sad.

I appologize for mentioning names. I was so upset yestarday about my visit with this doctor. I just hope people read reviews before they travel so far with hopes to find answers and instead get even more confused and disapointed. I actually read reviews about this doctor on vitals.com the night before I went and they were horrible. I wish I would have taken them into concideration and would have saved time and money on this worthless trip. I am glad I had some testing done at least, and that is thanks to my local cario doctor who send over referal form for those, otherwise the doctor here at the clinic wouldnt have ordered anything. Even with the referal she still decided not to do some testing, like blood work panel and urianalisis. She said you did it before. Yes I did urianalisis before last spring of 2013 and it showed low aldosterone, so I would like to repeat it, but she refused to do this. Also, i asked her if she can check me for anemia and other vitamins, but she said no she doesnt think I have iron deficiency or other vitamin problems. This is so not true, i am so Vitamin D deficient that my rhemy put me on 50000 units one per week to boost it up. Wow, i am honestly shocked and so disapointed with this visit. These doctors that give oath to help patients in a best way possible, should be punished and not allowed to practice. They are in it just for money. My husband already called my coordinator there to complain. Also, i plan on writting a written complain to director of the clinic about this doctor and her manners. My suggestion to everyone who plans on traveling far away to some clinics, please read reviews and ask people around. Those reviews really mean a lot. I wish I would have taken them into consideration when I went to this clinic. Thank you all who replied to support me.

Hi psalm 23, so you didnt feel like Amitryptoline helped your chest pains in any way. I think my pains are more muscoloscalatal, so I was hoping it would help.

Hi everyone, thank you so much for replying to my post. I was acualy told by many local doctors that I have POTS. Also, my neurologist at Columbia said even though my autonomous test at his office showed negative, I could still have POTS. But for some reason, Dr. at Vanderbilt said I showed negative and she highly doubt that my problem is dysautonomia. She said your BP is boarder line so you brain sends signals and thats why you have palpitations and increased HR. doesnt this mean POTS? Ohh well. Also, for the referal, my insurance doesnt require referal. And the reason why I didnt make appointment earlier is beacuse when I initially scheduled appointment at autonomous clinic, I asked how they and if I need to see another specialist, the doctor will try to get me an appointment. The scheduling person said yes. But now the doctor refused. I came to hotel today after appointment and called cardiology and pulmonology and they said they have few spots but only for doctor to doctor appointments, so she needs to refer me. I dont understand why she told me they dont do it. She actually laughed at me and said, we dont do it. I am in so much pain in my upper body, especially in the chest area every day. I so many specialist localy, cardiologists, rheumatologists, neurologists, but noone can figue out what is causing the pain. Rheumatologist says its some kind of inflamation in my body because my ANA, sedimantation rate, and WBC count is always elevated. I was hoping they will at least try to find out what is going on here , but its not happening I guess.

Hi, everyone I really need your support. I traveled to this clinic this week for some testing and to see a neurology doctor who specializes in POTS. My husband drove me here and it took us 15 hours to get here, a lot of expenses for hotel and fuel, plus his time off work. Today was my first day of testing. They did autonomous testing in the morning, then after that QSART test, then I met with the dr. She said my tests showed negative and that my blood pressure is border line, said nothing about the fact that I said usually my HR goes above 110 in mornings. She said that based on my testing it doesn't look like i have POTS or in fact autonomic dysfunction at all. She didn't really suggest anything besides drink water and salt tablets, which i was already doing for so long. Also, didnt bother discussing any medicines with me. When i tried asking her a question, she stopped me and said "let me finish first", which was very rude. She didn't even bother ordering the cathecholins (don't know the spelling) supine and standing blood work, even though my refering doctor checked that test on order form. After i asked her, she said ok, i will order it, but not really needed. Also, i asked to check my iron level and she said that my primary doctor needs to do it. Then i mentioned to her my chest pain, and overall muscle pains, but she just ignored it. For my chronic cough, she said to see pulmonologist. I said i already saw 2 pulmonologists in PA where i live and woud like to see one at vanderbilt and also want to see cardiologist. I asked her to refer me to see them while i stay in the clinic, but she said no and when i asked why, its not done this way here, my primary doctor needs to refer. I said but if my primary refers they will not be able to see me in these 3 days while I am at Vanderbilt, but if she refers they can get me an appointment, but she said no. Please help anyone who sees this massage. I came to my hotel room now and basically sit and cry. I am more confused then before i came here. All this time I was told I have POTS, but today this dr said I do not have it. Also, when i was driving here the woman that sat up all my appointments said that if the doctor will tell me I need to see someone else, the will try to get me an appointment while I am at the clinic. I still have two days here because on friday they are doing blood volume test, tomorrow I have no appointment at all. I am still happy I came because of all the testing, but i thought i would be able to get more information as to why I am feeling like this for past 1.5 years, plus I thought maybe I would be able to see other specialists. Can someone recommend how I can try to get those appointments. Also, is it common to see a doctor in such big clinics who are considered the best and to be treated this way. Can I ask to speak or see a different doctor while I am here, or that would not be possible. Please anyone help. I feel so bad, i was telling my husband I really want to come here because that is where I could probably get help, but it was a totally the opposite experience. I did read here that this is a good clinic, so does it mean that the doctor that I saw is just not good. I am so confused and just want to cry. This is so not fair of doctors to treat us like that. We are driving for so many hours, waiting for month and month for this appointment and then such a disappointment. I was preparing for so long for this appointment, had prepared so many questions that i wanted to ask and not even one question was answered.