Gemma

Does any one know about xanax and pots or dysautonomia over all. Some of the doctors mentioned to me already few times, that i need to get off xanax, because it might be making my condition worse. Its something about relaxing muscles in the limbs, because besides working as calming med it is also a muscle relaxing. I am panning on getting off it, but scared so that i wouldnt totally crash. But i want to get pregnant so have to get off the med.

Hello everyone. This question is mostly for women. I really want to get pregnant. I am 31 and no kids yet. I had a miscariage a year and a half ago and we were trying for 2 year. It happened on the 5th week of pregnancy. I am really worried if I would be able to get pregnant at all. My pots symptoms started after the pregnancy. Well i actually only had few fainting episods, but then last december i got sick and that when my pots syptoms got really bad. I think i had some kind of virus. So, i am not sure if pregnancy was an onset of pots or virus. At first i didnt kow why i was so sick and being in graduate shool working on my doctors of physical therapy, i believed doctors when they said it is anxiety from school and kept on feeding me anxiety drugs. Well that didnt help much. I am now on xanax 0.25 x 3 per day and was taking midodrine, but now switched to flurinef. Also i am taking nexium for the cough that i developed a year ago, think its acid reflex. I know i can not get pregnant on these meds. I am planning on trying to get off xanax in octeber. But dont know how to do without other meds. This december it will be a year since i got really sick. Any sugestions anyone how you were able to get pregnant with this sickness. My doctor said that i will feel better when pregnant because more blood flow, but how do i get pregnant on all these meds. This is so depressing. I am scared that I will not be able to get pregnant. Also any advice on what hormonal tests i need to do to check for fertility and stuff. Last time it took us 2 years to get pregnant and it ended up in miscariage. Please any advise woud be great. Thanks a lot.

Hi everyone. I am in similar situation. I see that this forum is like 6 month old, but maybe someone will be able to answer. I also had a miscarriage a year and a half ago. Have been perfectly healthy before that. After miscarriage i had few episode of feeling like i will pass out. Then almost a year later I got sick with some virus and plus too much stress from school and i totally crashed. I thought i was dying. Now it has been 8 month and i am still very sick. I noticed that i get more sick before my period. I have more chest pains, back pains, more fatigue, more lightheaded, basically falling apart totally. One doctor told me some time ago that because of post i am unable to get pregnant. Ohh and i forgot to mention that we were trying for 2 years before i got pregnant. I had miscarriage on the fifth week. Very upsetting. I wonder if i need to be tested for some women's hormones. My endocrinologist did test me for hormones, but didn't pay much attention to women's hormones. I heard that they need to be tested during certain days of menstrual period. Would i need to see a fertility specialist for those tests or can my regular gyno do them. I told her once that i might be having dysautonomia and showed her tests that my endo did and asked if she can do any more tests, but she said no. I had thyroid tested and some other hormones like LS, FSH, not progesterone. Any advice would be so helpful. I really want to get pregnant. I am 31 already, plus on xanax and now flurinef. Being on these drugs doesnt allow me to even try to get pregnant. I need to be off the meds, but my symptoms are severe. So i dont know what to do. I am willing to get off drugs for sometime if i can get pregnant, but i cant be off meds for so long while trying. Sorry for long massage. Thanks.

I also hope you finding some answers for your sons condition. Send me a message of whats new with him and if you were able to see some more docs and if any progress so far.

Hi looneymon, I was on midodrine for a month and a half, started with 2.5 two times a day, then increased to 3 times a day. Still had lightheadness and increased chest pains. So i asked doc if i can try flurinef again and he advised this time to take only half of 0.1 pill, because last time when i took the whole 0.1 pill I ended up in ER with full blown panick attack. Now it does seem to help with lightheadness, but i still feel more anxious with it and I do take xanax 3 times a day. I just have this constant fear of something happening and that something going on with my heart. The chills and hot flashes that i described earlier went away after 3 days, so probably body was adjusting. Doctor recomended to take only 1/4 of pill now, because maybe it was too much. However, today i didnt take it and want to see if my BP starts droping again once I am again without midodrine or flurinef. I will try to drink beets juice in the morning to increase my BP, i read nline that it helps. So will see. I really want to be off steroids as I plan on getting pregnant once I tapper off xanax and really do not want to add another drug to my system that will require tappering off also. But ofcourse I understand that if my body will need those meds I will have to continue taking them.

Also, how did you get off flurinef. I heard you need to taper off this drug. And did your BP improve after you got off or it went down again once you got off the drug. I just wonder if fluinef can somehow help stabilize the Low BP, or it just temporary relieve while on the drug. Also, looneymom you mentioned that your son got off the drug after taking it for sometime and his BP was stabilized. So you think flurinef helped stabilize it somehow, or it didn't do much. I remember you said before that he is on midodrine, so you think thats keeping his BP a little higher? Thanks everyone.

Hi Alex, thanks for reply. Sorry i wrote .5 and meant to write .05. I had a blood test done at ER and my potassium was 3.5, calcium and magnesium was normal. Yesterday i didn't have that feeling anymore, but i feel like its harder for me to breath. Today i didn't take the med and want to see what happens. I saw my cardio assistant yesterday and she recommended to try 1/4 of 0.1 pill. My concern now is looking at my blood test result from the ER is that my GFR was down to 79. In june it was 141 and now it is 79, and it says that below 60 is chronic kidney disease. So this now concerns me a lot. I wonder if midodrine or flurinef could have caused that, because since june those are the only 2 drugs that I added to my system. My GFR was always average of 120 with a lowest of 110.

Thanks a lot Sarah

Hi everyone. Wow I am suprised so many people here had catherization done. I am really scared to do it after reading all the risk factors of it. I will consult with another doctor probably.

Hi everyone. I just switched from midodrin 2.5 mg 3 times a day to flurinef 0.05 once a day. At first i felt great, almost no lightheadedness. But on day 5 i started feeling like i am coming up with a flu. I feel chills, hot flashes, tired, harder to breath, pain in the back of my head, and palpitations are back. I know its a steroid and maybe my body just needs time to adjust, but i am a little scared of feeling this way because it is a steroid. Anyone experienced anything similar? I asked my doctor and he said that feeling like coming up with a flu is not common side effect and maybe I can give it some more time to try and see. I really wanted this med to work because it helped with lightheadedness, plus midodrine was giving me more chest pains. But now due to these new symptoms I don't know if i should continue. Also, can anyone tell me what is a long term negative of taking this steroid med. Thanks.

Thank you for the reply Nina. I am scheduled to see EP cardio doc at u-penn as well. My cardio from Temple recommended to see EP at u-penn. His name is Dr. David Lyn. Is that the same doctor you see. I just scheduled appointment with any doctor, because it is a long wait and hope that if he is not familiar with how to work with my condition maybe he can give my case to someone else in U-Penn who would be familiar with dysautonomia. I just want to find a local doctor who can work with me and be able to communicate with the doctor from NY that I saw for dysautonomia. I still do not know if pots is what I have, but all my symptoms lead to it, drop in BP, increased HR, palpitations, severe lightheadedness, chest discomfort and everyday pain in chest area. If you don't mind can you give me the name of your doctor at u-penn. You can massage me. Thank you very much to all of you. This forum is a big help.

Thanks everyone for responding. I will keep you posted on what I decide. I have not seen Dr. Goodkin. I herd of him, but thought he was just an internal medicine doctor. Does he work with dysautonomia patients? And how long did you wait to get an appointment? I saw couple of doctors in NY. Last one I saw was Dr. Weimer from colombia neurology school. Research him. He said he will try to figure out what is going on. He did blood work in his office, also MRI of head right on spot to check for chiary malformation. But for the autonomous testing I am going back in October because he is the only one who performs that test and only does it on thursdays. I am not sure what kind of test that would be, but was told autonomous testing (don't know whats included in that test). So far he only found that I might be having a celiac disease, which is already a progress that he found something , compared to other 20 doctors who say its just anxiety and everything is ok with you. So now I am working with my gastro on that issue. Did you see any other doctors in Philla area that you could recomend. I saw neuro at Jefferson, with no success. I have another appointment with cardio and neuro at U-penn, but I don't think they specialize in dysautonomia. Sorry a lot of writing, but I just got exited that there is someone here from my area.

I really dont want ct scan because i just had one done for my chest 3 month ago and now another one, too much radiation. But I know that catherization is even more invasive. The problem is that all other doctors do not want me to do any of those tests, they do not see a concern. But she is saying since i keep complaining about my pains for so long and all other tests are normal next step would be catherization. I aksed her for other options but her reply was that she risk her reputation and would do that test to make sure. So after these words, i dont even think i trust her anymore. She is only 39 yrs, which is very young for cardio doc, so i am thinking maybe she is just afraid and want to cover herself. I saw other 2 cardio docs and they said it would be crazy to do cath or ct scan for me.

And I am in philadelphia, so its about 6 hour drive for me to Dr. Blitshteyn and about 7.5 hours to cleveland clinic.

Hi Sarah. Thanks for reply to my post. So, you would advise to see her for pots. The problem is that she is not performing any tests on spot. Did your friend get any testing done while there. Also, I heard that CC was not very helpfull, what can you say about them. Thanks a lot.

Do you know if she will just do initial consultation only or does she perform the tests while visiting her clinic. Thanks.

Hi, has anyone been to cleveland clinic for dysautonomia. I have appointment and do not know if it is worth going or not. Thank you.

Hi andybonse, How did you convince our doc to do mri/mra for heart. I aksed for it and at first she said ok, but then ordered wrong test, not cardiac but regular chest mri. I called radiology department and they said she needs to submit more info to do cardiac one. Today i spoke to her and now she is telling me that cardiac mri will not show anything, like it will not show if there are blockages anywhere in the coronary arteries. She said that she would either do catherization or ct scan to see for sure. I still asked her mri but she keeps on telling me there is no point. I think she screwed up something when initialy ordered a wrong test and probably either insurance doesnt approve it or something else. So, i wounder how your cardiologist agreed to do the test and did he say that it will show if there are any blockages.

Thank you Corina. I am choosing if i should go visit her or clevelend clinic. Both appointments are same week and my husband cant take so many days off same week to drive me.

Hi freaked, so you saying ct scan is less dangerous then catherization? I am just so against ctscan because of radiation, thats why i wanted to do an mri, but my doc says that mri will not show any blockages. So, she is saying if i worry that much do a ct scan or catherization. I read that ct scan is like 50 or more xrays, which is a lot of radiation.

Hi everyone. I have appoitment this upcoming monday at the Cleveland clinic to get checked for dysautonomia. I have been having all the symptoms but my diagnose was not 100 percent confermed yet. I wanted to kow if anyone ever went to clinic and if it is somehow similar to mayo clinic. Do they do all the tests while you stay there. I asked to schedule with dysautonomia specialist and they sceduled me with Dr. Karen. H. Browning, a neurologist. However when i go on their site she is not listed as dysautonomia specialist. I live 7 hours away and my husband needs to take time off work to drive me there and I dont want it to be a waist of time. Any advise. I also have appointment with Dr. Blitshtein, in NY, and was wondering if anyone went to see her and if that is worth a trip. Does she do testing in her office or only consultation. Thank you very much!

Hi everyone! I have a question about cardiac MRI or MRA. I have been experiencing some chast pains everyday for past month or so. Before it was only like couple of times per week. I got off midodrine and started Flurinef and the pains decreased a little, but still experience them. Does anyone know if midodrine can cause more chest pains? And if it does what does it mean? Also, i asked my cardio doc to do cardiac MRI for me but she says that to know for sure if I have any blockages and thats why I have pains would be to do catherization CT scan. I dont really want to do any of that because of the risk factors and do not want to do CT scan because just recently had one done at ER, a chest CT scan, so that would be too much radiation. However, she doesnt want to send me for an MRI becuase says that it will show only limited information and this is not an apropriate test to do. Any advise one this issue. I had so far, regular stress test, echo stress test, like 10 EKGs, 2 echos, all results are normal. I am 31 years old and they tell me that if my stress test is negative my likelyhood of having a cardiac problem is less then 1 percent. She does consider doing catherization or ct scan as an option, but doesnt want to do mri. I am trying to argue that with her, becuase everywhere online it says that cardia mri or mra does show if there is any blockage in the arteries. All these cardio docs tell me it is not my heart, but I am so sared everytime I expirience the pain and feel like I should be going to hospital everytime, and I have been there like 8 times before for chest pains and found nothing. Any advise on this issue please. Thank you everyone!!!

For some reason I cant open the link. It gives me error . Can you post it again please. Thanks.

Also Katybug, i see you were diagnosed with allergic rhinitis? How they diagnosed you with it? I feel like I have it, because often feel pressure in my sinuses and hard to breath thru the nose. However my skin test shows no allergies beside one type of tree. Also, saw ENT doc who performed that test where they insert the tube into your nose and said that all looks fine. I dont know maybe its just my sinuses bothering me. He wanted me to do ct scan, but I refused due to radiation. However, my head mri did show that i have mild sinusitis.

Thanks for reply Katybug. I just spoke to my allergy/immunology doc and he said he will order a blood test for me. I was already checked for the lyme disease (negative), HIV (1 false positive which freaked me out, but then following 3 tests showed negative), hepatitis I had checked for my school since I a, in med field and thats negative and I have immunizations for it as well (had to get for school). So besides those would they check for anything else. I asked my immunologist to also check for active epsein barr virus because I had mononucleosis 6 month ago. I don't know what else to ask them to check. Any sugestions. Thanks a lot everyone. I am learning so much on this forum. Without this forum i think doctors would not check me for anything, becuase I constantly have to tell them what to check me for.