Roselover Posted April 9, 2005 Report Share Posted April 9, 2005 Hello everyone,I have been reading your posts and have found many of them very helpful. Thank you.I have been sick for 3 years now. I have POTS and Fibromyalgia. My POTS was diagnosed with a tilt table test. Then I had "autonomic testing" (done at OHSU in Oregon) and it showed most functions on the borderline of normal. My neurologist questioned the POTS and so I had another tilt-table. It defineately, showed POTS -again! The OHSU tests were done with poor equipment and the report was poorly written and contradicted itself.I started on propanolol and florinef. It dropped my BP lower and I felt even sicker. I stopped all meds for a surgery last November. I required extra IV fluids in the hospital, but they sure made me feel better. Now I have seen a new cardio who insisted that we give florinef another try. Started me on 2 a day plus atenalol. Again BP dropped. He increased florinef to 4 a day - headaches began. He reduced the florinef to 3 a day and I stablized, but no improvement in symptoms. He added ProAmatine. It didn't help BP BUT - I ended up in ER with heavy heartbeat and strong pressure/chocking feeling in throat. However, the IV I recieved helped my BP for over two weeks.Now, I am taking floinef 2 a day and atenolol and I have added a sustained release salt tablet, but planning on getting off so we can do some adrenal testing. I don't know what else to do. I am hoping my doctor will prescribe a regular IV treatment. I don't understand why it works better than drinking water and salt.We are looking for the right doc to visit - anywhere in the country. (Although I wish I could find one on the west coast - Oregon or Washington) My family physician is great, but doesn't know anything about all of this. She will work well with another doctor who does though.So... that's my medical overview. I used to be an active person with lots of church activity, gardening, tennis etc. I have three lovely children - all very helpful in taking care of me and a husband of 21 years. It's hard on him, but he is very caring and helpful.Thank you for this forum. I look forward to getting to know some of you and for the help I know I will find.~M Quote Link to comment Share on other sites More sharing options...
geneva Posted April 9, 2005 Report Share Posted April 9, 2005 Roselover, Welcome to the forum. I am glad you have been reading some of the past posts because it can be so uplifting to find that there are others out here who can relate to the symptoms you have (right?). While each case is different per individual, we have many similarities.I don't know of any doctors on the west coast. Seems most of the specialists are further east. Perhaps others here will have some advice or experience they can share.In the beginning I took Atenolol and Florinef too and the combination aggravated my bp terribly, causing it to go all over the map. The atenolol worked for the fast HR but caused my bp to drop too low so the doctor increased the florinef but then my bp in the evenings went too high! I felt like the meds were creating more problems for me and I was taking too much of a dose just to counteract the other med....drove me nuts. After 2.5 years I went off them, at a well controlled rate. Everyone has different experiences with beta blockers and florinef. I hope you can find something that works to improve your symptoms.again, welcome! Quote Link to comment Share on other sites More sharing options...
blackbirdsings Posted April 10, 2005 Report Share Posted April 10, 2005 Welcome!! Sorry, you had to join but I am sure you will find this group to be very helpful.I just wanted to wish you well and add that florinef is not the right medicine for everybody. Talk to you doctor about it, but if it keeps being troublesome, there are other options. I did very badly on florinef everytime I took it, and it didn't help me-actually made things worse. I just re-read that things are more stabalized now. Read old posts on diet, exercise etc. Lots of daily things we do that help us out in addition to medicine.Good luck...I hope this makes sense..I'm in a bit of a POTS hold right now but wanted to at least welcome you. Quote Link to comment Share on other sites More sharing options...
briarrose Posted April 10, 2005 Report Share Posted April 10, 2005 RoseloverWelcome to the board. I'm from Portland and have struggled trying to find a doctor that specializes in Dysautonomia. I travel to the MidWest to see a specialist. I have spent countless hours looking for someone here to help me. I called my health plan and they searched for 2 weeks looking for a doctor. I searched all over Seattle for a doctor with no luck. My cardiologist from the MidWest works with my primary and my cardiologist here in Oregon. I'll be starting with a new primary doc after next week and have had an introduction consult to meet with him. He is from Oklahoma and has had a handful of POTS patients. Quote Link to comment Share on other sites More sharing options...
corina Posted April 10, 2005 Report Share Posted April 10, 2005 Hi Roselover,I'm not from your country so I can't help you with the doctors issue. I just wanted to welcome you on this forum. You'll find a lot of warm and caring people here. There also is a lot of information on the DINETsite about what might help you. I hope you'll find a good doctor soon and that your POTS-trouble won't bother you too much,Corina Quote Link to comment Share on other sites More sharing options...
Richland acres Posted April 11, 2005 Report Share Posted April 11, 2005 [Hi Roselover,welcome!! I to have pots (5yrs, 1 yr ago diagnosis) & fibromyalgia (15 yrs). I am on nadadole for pots and take ultram (tramadol) for fibro pain. I do have another illness pertaining to my muscles still in diagnosing plan. Not sure yet, have more tests next week.You will find lots of info and help here. Just wanted to welcome you.Best wishes,Brenda R Quote Link to comment Share on other sites More sharing options...
mom4cem Posted April 11, 2005 Report Share Posted April 11, 2005 Hi Roselover,Welcome. I am new here also, but have found this site very informative and supportive. I am still also trying to find a dr. who understands all the symptoms etc. My tilt table test was many years ago and was considered blunted. These past two years have been troublesome with more symptoms popping up often. Hoping by being supportive and reading supportive posts we can help and be helped. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted April 11, 2005 Report Share Posted April 11, 2005 Hello Roselover! Welcome to our unique group! I am glad you found the forum and I hope it will continue to offer you good reading and support!I am not familiar with doctors on the west coast. Hopefully you will be able to find an excellent local doctor to work with the specialist, wherever you finally find one! Having a super internist/pcp will be a valuable key to maintaining your health.best regards, tearose Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 14, 2005 Report Share Posted April 14, 2005 Hi,Welcome to the Forum,Have you tried compression hose?I have a standing order for IVs so when I am rushed to the ER I use it because this is the only way to stop an attack.Ernie Quote Link to comment Share on other sites More sharing options...
Roselover Posted April 14, 2005 Author Report Share Posted April 14, 2005 Hi Ernie,Thank you for your welcome!Yes I have two pairs of support stockings - my insurance even paid for them. But, they are so hard to put on!!! If I haven't pulled my back muscles while putting them on, I am exhausted! I only use them when I am going to be out and up for long periods, but even then they don't seem to help that much. I also don't have swelling in my feet. I have swelling in my abdomin! Glad you felt encouraged by all the messages.~Roselover Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 14, 2005 Report Share Posted April 14, 2005 Hi,I have rubber glove that I use to put my compression socks. It helps a lot because otherwise I could put mine on.Ernie Quote Link to comment Share on other sites More sharing options...
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