Can you fail tilt table and still have POTS?

[laila]

Hi Everyone,

I am new to this site and have been recently referred to a Dr. in Maryland, In fact the one listed on this site!) because of troubling symptoms through the years. I noticed in my middle 20s that I would get panicky in store lines, had no idea why. Something about flourescent lights bothers me and the chemical smells in stores. I then started having anxiety attacks off and on through the years, which I attributed to too much smoking and caffeine and alchohol. I just have never been able to drink even a few beers without feeling all weird the next day. I was put on short doses of xanax at times. Once I had drank c 2cups of coffee, ttaken 2 sudafeds, and had a bad sinus headache, and was leaning over my desk at home when my heart started pounding and I felt like a red hot explosion ?) in my head. I was so scared I lay on the floor and called 911, was so embarressed but was taken to the hospital and diagnosed with a sinus infection and anxiety. I had also had several normal ekg tests over the years. In 1995, five years after my third child was born I started noticing that my arms felt fatigued, Not weak, when doing chores like washing windows, hair, etc. Gradually my legs started feeling fatigued sometimes, and I had the normal full work up of tests for sed rate, lupus, lyme, thyroid, you name it. Everything came back completely normal!! Then when my daughter was in school, then I wasabout 36, I went back to work part time at my husbands restaurant. After about 4 hours on my feet I started haveing sweating, shaking, heart pounding events, I would have to run in the back and sit down. So I quit that. I was sent to a cardiolagist, given a 24 holter moniter, echo, and all that was fine, he said "a lot of peopple have this problem, it is all anxiety." Oh, I guess by then I was also having heart pounding episodes when arising from bed, that would take several hours to settle down. I never actully fainted in stores or anywhere, just felt like it and often had to leave. I also notcied one summer it was intensely hot and I felt really faint after walking to the store from the car. finally I had the mother of all panic attacks just out of the blue one morning. I felt my heart pounding, dizzy, nauseous, everything seemed gray and unreal. Luckily my husband was here and I asked him to call 911 but he (Poor, calm guy with the panicked wife) talked me into going to the Dr. I felt so bad I had to sit outside till he got a nurse to help me straight to an exam room. I had another ekg, my blood pressure was high, and sugar level was high but a blood test showed no sign of diabetes. I was then referred to a psyc doc and put on xanax full time. I had a nice Dr. and the xanax did help alot, though never has completly controlled my bad morning symptoms. I was dx with generalized anxiety disorder and panic attacks, which I did notice under stress i would get worse. BUT I ALWAYS FELT LIKE THERE WAS SOME PHYSICAL CAUSE FOR SOME OF THE SYMPOMS, I got books at the library, etc. but notheing ever came of it. Then I started working full time at a desk job and for 4 years i managed that till i was diagnosed with needing a hysterectomy due to fibroids and heavy bleeding. I never really had time to go the drs a lot anymore. Also at this job would experience late afternoon crashes (of shaking and brain ffog) usually after a late lunch and symptoms always seemed worse aroung that "time of Month". I was tried on numerous antidepressants to help but have never been able to tolerate them am interesed in starting at a lower dose theory I have read on these posts. Well I still was having trouble occsasionally in stores, was dx with chronic fatigue, and then fibromyalgia, because of occasional leg pain, which now seems chronic. I asked for every test under the sun but everything was fine, pancreas, endocrine, adrenal. I continued

mentioning the weakness and faintness in stores but was told it was the chronic fatigue. I know this is really a long post. Maybe I should print it out for my Dr. In 2002 I quit my job and had the hysterectomy and WHAM that is when life ended as I knew it. The surgery completely floored my for months, the 6 week recovery was a bigh joke. I came out of the surgery and started vomiting from the demerol and anesthia, so they started giving me Touridal shots. I sent my husband home with my 11 year old daughter, so she wouldn't have to see my like that. I then had extreme panic attacks from the Toridal, the nurse said "oh its just like motrin,it couldn't give you panic." I now wish I had had someone there to help me with the staff who are so over worked i guess they dont care. I acutally thought I was having a heart attack and they didn' t even check my pulse!!! Finally after begging I got to go on percocet pills and was better. But the recovery from that op has dragged on for 2 years, all my previous symptoms worsened. Sometimes feel faint in shower, am just now getting back to pre surgery strength. I also quit smoking and drinking 2 months ago which has helped ALOT with the anxiety. At my physical last month I insisted once again to a different doc that something did not seem right and she wrote the referral for DR. Ramesh Khumna in Maryland. Has anyone seem him? I live in Marlyand. Oh I also have neuropathy in my feet. I was given tests for that too but there was no specific dx. I am sorry to have rambled on so, but am now wondering if you can still have dysautonomia in some form if you fail the tilt table. Should I ask for that???Thank you everyone, just reading all these posts has made me feel better, just knowing what the heck this could be is half the battle!!! I also have chronic monthly sinus infections and do feel better over all when on the antibiotic biaxin. Nothning else helps or makes me sick. Alot of sleep helps too!! I have to go througha whole morning routine it takes me an hour to get through the shower. I dont know if Im on too much xanax, and that is why or is it the possible pots. Thanks again for any advice. .5 mg xanax 4 x a day.

[Aprilmarie52]

sounds like you have had a lot of bad experiances with doctors. Dont give up. The answer is out there somewhere. Some days will be better than others but you just have to keep going.

good luck with the new doctor

[futurehope]

Laila, Is it Dr. Khurana by any chance? He's my doctor.

[MomtoGiuliana]

I think seeing a POTS specialist will help tremendously to clarify what is wrong with you. It certainly sounds like dysautonomia, based on your symptom description. I live in Maryland (eastern shore) and I have an excellent specialist here who sees patients all over Delmarva. I know he is taking new patients, so if you are interested at some point, I can give you more info.

Futurehope and anyone else: I would be interested in feedback on Dr. Khurhana. My sister who has just been diagnosed with POTS will eventually be moving from GA to the DC area and will need a POTS specialist in the DC area.