Gemma

I do feel like sometimes some of the meds that i take make me feel much worse. Also, many of the drugs that i have been on gave such horible side effects, that i developed realy bad anxiety. I am so scared of taking anything and feel like i should drop all of them.

Hi Sarah. No I live in Philadelphia and had to travel to see her. She seems like a very knowledgable doctor, but its a little inconvenient for me because i live so far. She does phone consults for patients that live far but they are not covered by insurance and 1/2 hour cost $150, which I don't think I can afford with all my other medical bills. Honestly I didn't find anything new from the visit. I will pm you.

Hi Chris. So you not taking any of those drugs now, just the ssri. May I ask which one? I was told zoloft helps a lot of patients.

Hi everyone. I am trying to find here if anyone ever had reaction to contract dye that they use in ct scan. I had a pulmonary ct scan with dye done this may and after it i started having issues with my bo and hr. The following day after the ct scan was done i had to go to ER because my HR was going up to 130 upon standing, felt palpitations, and drop in BP. I had symptoms of dysautonomia before that, but it got really severe after doing ct scan. Still 3 month later i have this issues. Now due to my constant every day chest pains, my cardiologist suggested doing cardiac ct scan angiogram with a dye. So now i am scared that i might start feeling even worse after that test. Another cardiologist advised to do catherization because its a gold standard test, but i am scared and its too invasive and complicated. Cardiologist that suggested ct scan says that catherization is too much for me. All my tests showed up negative. I had many ekgs, 3 holter monitors, 2 echos, stress test, and echo stress test. All negative. But i feel chest pains every day and its really disturbing. Cardiologists say that they think there is really nothing going on with my heart and that pain is most likely not from heart, so they will do these tests for my peace of mind, to calm me down. Well i know they say nothing wrong with my heart, but when I feel the pain, i start panicking and think maybe they are missing on something. I just started small dose of beta blocker and it seems to releave some pain, so now i am really concrned because if it releaves the pain maybe there is really something bad going on with my heart. Also, i am 31, 115 lb, overall healthy, but my chokesterol is 188 and bad one (ldl) is 108, which is a little elevated. Any advise on this issue. Thanks everyone.

Hi, thanks for reply. So it doesn't mean that something is wrong with my heart. All cardiologists say that they don't think pain is coming from the heart. But now i am scared if beta blocker helps with pain, doesn't mean it could be angina or something, because this drug is used for that. I mean logically i understand that being 31 with all normal cardiac tests and no risk factors i shouldn't worry. But each time i get the pain i feel like it will progress and lead to something more severe God forbids. I even started going to cognitive therapy for this, but doesn't help at all. I am so scared to be home alone. I am a little concerned because my bad cholesterol showed 109 and overall 188. I feel like my numbers should be much lower then that.

Hi everyone. I just recently visited another doctor who specializes in dysautonomia and she recommended to trying beta blocker Atanolol for the chest pains. I am on day two and have almost no chest pains at all. I am on a very small dose 1/4 of 25 mg. I do feel horrible on it though. It makes me very spaced out, disoriented, lightheaded and felt like will pass out couple of times today. Also it lowered my BP down to 80/50 today. I send doctor an email about it, but she said to continue the med. So, now I am really concerned if beta blocker is decreasing my pains and its meant to treat heart problems like angina, could I possibly be having some heart problem? I had a lot of cardio tests done, everything besides catherization and CT scan, all others like ekgs, stress tests, echos, monitors were done and absolutely normal. But if beta blocker is reducing my chest pains could it be heart related? I am getting really scared now.

By recomendation of the last doctor that I saw, I started Atanolol 1/4 of 25 mg. Today is the second day and I almost have no pains at all. I do feel very spaced out and my BP droped to 80/50 today, but no chest pains. So now I am concerned if beta blocker is decreasing my chest pains, does it mean that I could be having heart issues like angina. I am getting really scared.

When i first started Flurinef 0.1 mg I felt really bad anxiety and couldnt tolarate it, so I stopped and started midodrine, which helped but i had to increase the dose and felt like it was giving me more chest pains. Then i decided to try flurinef again, but this time started with half of 0.1 and still felt some side effects. I spoke to my doc and he said try 1/4 of 0.1. Well almost all my lightheadness are gone. However i still feel like its really hard for me to tolarate any extra activity. I just took lik 10 min walk in the park ans feel out of breath, but at least I am not lightheaded as I used to be thruout the day. I hope that if I add beta blocker maybe I will be able to tolarate more activity. So my advise would be to start with the smallest dose and then build it up and if you feel worse on higher dose go down and stay on smaller. The last docotor that I saw wants me to still increase flurinef to at least 1/2 of 0.1, because she is adding beta blocker and that can lower bp even more but flurinef will help to increase it. I will first try bb and see how it helps and if i can tolarate it at all. Also she advised me to get off xanax slowly because not really good for me.

I had a near syncope episod when i tried coreg, its an old type of beta blocker. I dont know why she wants me to try this one. My bp is already low and i take flurinef for it. I do not have palpitation or anything, my only concern is chest pains and she said atenolol should help. But if cardio docs are saying its not cardio related then why do i need a beta blocker for the pains. I am confused.

Hello everyone. I also experience these pains. Sometimes its stabing sharp pain and sometimes it could be squizing pressure pain in the middle of chest (which i read could be heart related). My cardiologist said that stabing sharp pain is not heart related, but he is a little concerned about the squizing pressure pain. He said to definetly make sure its not heart is to do catherization, but i am 31 and all my other cardiac work up was negative, so he wouldnt want to do such an invasive test. But the other option is to do ct scan angiogram with calcium score test. He says if thats negative and all other tests are negative as well, then its not my heart. But i am wondering if its spasms, how will they see it on ct scan. I think ct scan will only show blockages. I saw neurologist yestarday who is very knowladgable in dysautonoma and she told me thats its very common in pots pstients. She recomended to take small dose of beta blocker, atanolol. Did any one here take it ever for chest pains?

Hi i have a similar question. I saw another dysautonomia doctor who seemed to be very knowledgable in this condition and she wants me to add beta blocker, i think atenolol. But i know that bb lowers bp even more and mine is already very low thats why i take flurinef. Also, i complained with chest pains, so she said bb might help, but on this forum lots of people wrote that their chest pains decreased once they stopped bb. My cardio work up was all normal. The only tests left are ct scan or catherization, which are too invasive and i am scared. All cardio docs say pains are very unlikely heart related and they can do those tests to lower my axiety. But now she is giving me a bb which is usually used for angina chest pains, so i am thinking is she maybe thinks its heart related. I am so confused. Can anyone advise me on what am i going to feel when i start this med. Is it going to make me more tired, more lightheaded.

Thanks sue. And in Nashville you mean Venderbilt clinic?

Hi sue, so was Mayo in Jacksonville helpful or not? I have appointment with them, but now think maybe I have to go to a different location. Thanks.

Sometimes i wish i never took xanax. My doctor never properly explained to me how dangerous the drug can be and how hard it is to withdraw. He initially gave it to me for my cough ,because he said it could be due to anxiety and it was right after my grandpa passed away, so I took it. Now 6 month later i am still on it. Went off it for a month and then had flare of abdominal pains and went right back on it, i wish i never did. When i was going thru withdrawals i promised to myself that i would never ever take any benzo again, but then went back. Now i want to withdraw again and so scared because remember what I went thru last time.

And do you know the full name. I get few different results with this name.

Thanks potsluck i am going to call them. Baltimore is only like 3 hours away. I am also seeing this doctor in NY, Dr. Weimer. He is from columbia nuerological department. He supposed to perform autonomous testing for me. For now he just did an antibody blood test. I have hopes in him as well. Can you PM me about your visit in november. Thanks.

I live in philadelphia. Will check today how many hours it will be for me to drive.

Thanks Sue. So i guess i better schedule appointment at AZ clinic. Maybe they specialize more in dysautonomia then other locations. I am just so scared to fly and thats why I chose Florida because its closer to Pennsylvania. If anyone else went to florida location please let me know about your experience. Thanks a lot.

Hi everyone. I was wondering if anyone heard of mayo clinic in florida. I scheduled an appointment there. I am afraid to fly at this point because of my chest pains, so wanted to drive and since I live in PA it would be closer for me to drive to Florida, then AZ. Do you think I will get the same experience as the clinic in AZ? Thanks.

Hi Alex i send a message. Thanks

Omg, thanks for the reply Alex. I feel the same. When I got off xanax after only taking it for 2 months, i felt much better. I started riding bike, walks in the park, my fear of being alone started to fade away. So i was pretty sure that benzo was screwing me up. But then i had a sever pain in my left chest area under the brest which lasted like over a week and was getting worse with everyday which took me to ER 3 times. On 3rd time i asked them to do a ct scan of the chest because was scared it was a pulmonary embolism or something (i was taking pathology course at that time where we learned about all these diseases and stuff so i was sure my symptoms were related to PE). Well of course ct scan showed absolutely normal results and i just got myself exposed to radiating. But what worse is that the day after ct scan, something started going on with my BP and pulse. My BP dropped to 85/50 upon standing and pulse went up to 130 upon standing. This was very wrong to me. My usual standing BP was 106/60 and pulse 85. I went back to ER but they said it cant be reaction to the dye that they used for ct scan. Told me to go see cardio doc. She put me on flurinef, which gave me so much anxiety that on second day i ended up in ER again. So basically I have been to ER like 5 times in a week and a half (feel bad for my insurance). I immediately jumped back on xanax because didnt know how to stop palpitations and anxiety that I was experiencing. This all happened in may. Now I am still on xanax and my BP problems are still the same. I wonder if that week of attacks was due to xanax withdrawal even though i was off it for a month. I heard that you can get those even after 6 month. Or was it reaction to the ct scan dye that messed me up. I mean I have been sick since last december, but not like i am sick now. I didn't have problems with BP or pulse before. I sometimes feel like xanax is really screwing me up. I am pretty sure it does help some people, but for some reason i feel like I would have recovered faster without it. I hope when i get off i will feel better.

Thanks for reply marigold. I already scheduled an appointment with one in september. I called my regular gyno, but she said that for those testings i better see either fertility specialist or endocrinologist. May I ask if you had pots before pregnancy and if you did how did you manage to be off meds during the time you were trying, or did they allow you to be on certain meds. My concern is while i will be trying to get pregnant, how will i be able to be off medications. I take, xanax ( plan on getting off in october), flurinef, nexium.

If anyone was on any benzos before,please share your experience, and if you felt any better when you got off. And your techniques of getting off the drug. I used passionflower last time. Also, potslock, i think you haven't developed addiction to xanax yet, because xanax is very short term lasting and if you feel like you don't need it during the day then you not addicted. But be careful because your body builds tolerance to the drug and with time you might need a bigger dose because will be feeling inter-withdrawals. Did you try other things for sleep. Maybe try passionflower extract. I sleep good from it. When i first started xanax i had to take a nap right away because it made me so sleepy, now i take it during the day and nothing. I am on pretty small dose. I take 0.25 x 3 per day, so not more then 0.75 per day. I refuse to increase, i think my body is constantly going thru the inter-withdrawals thru out a day. It gives me foggy feeling, feel like i am off balance, hard to breath and chest pains are the most scariest. I know all of these symptoms could also be pots related, but have a feeling that a lot is due to inter-withdrawals.

My doctor gave it to me without proparly explaining how dangerous it was. I took it for 2 month after death of my family member and then found psychiatrist who tappered me off the med really slowly, it took a month and a half. When i was off it i almost had no chest pains and i didnt feel much lightheaded. Then after a month off the drug, i got sick again and started having really bad problems with blood pressure and pulse, so i jumped right back on it. Also it was right before my finals in school. Now I regret it so much, i wish i never went back on it. I went thru **** while tappering off. I had couple of panic attacks during which i thought i was deinetly dying. Before xanax i never ever had any panic attacks. Now i am so scared to start my tappering off because i already know whats going to happen. But i really want to be off the med as like 3 doctors said it could be making my low blood pressure problems even worse.

Thanks Chris. I will try to get appointment with Dr. Jaeger. For now i am going to see Dr. Blitshteyn this friday. Thanks everyone.