laila

That was a great article. I have CFS and pots symptoms and there was alot of very interesting info I am going to print out for my next dr. appt. Happy Mother's Day and I am going to bed so more later!!! Thank you for sharing.

Oh My! I don't think anyone could have made it through all that without totally going beserk! I don't have time for a long answer right now, but I too have to take xanax and at times I have to take an extra dose, and sometimes it does'nt seem like its working. I have been on Klonopin, which stays in your system longer, but when I tried it I seemed very depressed and overly tired, couldn't get the dosage right. And I absolutely can not communicate with my pysch dr. at all, I am presently getting ready to switch. (After my appt. this week) I remember one of the first posts I read on this board was your experience with your Doc and I did write a big reply, of how frustrating it is. I am very sensative to meds, and have not been able to find anything else to take for my anxiety. Am going to try low dose of zoloft, have been thru just about all antidepressants. My doc actually started yelling at me like I was beeing a bad little girl and saying how 95% of his patients have no problems with other meds, I can not have more xanax, etc. He is a JERK!!! So recently I just sit quietly and act calm. If I have to take extra one day, I try to cut back on another day to make it last. Anyway, you sound like you need a couple of days of quiet time. Hang in there! PS I did quit smoking in January and it has helped a little. My mornings are the worst I shake and tremble.

Thank you for your replies, Nina and Deb. I did try the Atenolol 12.5 mg last night and this morning seemed a little better!! I was still trembling but my heart rate and blood pressure were ok. It did give me a bit of insomnia and maybe chest tightness, ( I have asthma and copd) (I did quit smoking!) which is why no one would ever prescribe this medicine before. Listen to this though, I went to the DR. for a sinus infection today (not my regular doc,It is hmo, but he did seem to remember me) and I asked him if there was any other kind of beta blocker that would cause less wheezing and he said Tenormin was specifically targeted for heart symptom, did prescribe it. Then I got it filled, and Temormin is the Brand name for Atenolol, the medicine I already had!!! Go figure. This is an older doc too that has been in the hmo practice for at least 15 years. I should become a pharmacist, I swear I have read The Pill Book (a guide to most presribed meds in US) from cover to cover trying to find my own cure!! Well at least he "listened". When I asked him why my anxiety/trembling was not under control, he said,"well you've always seemed overly anxious about your health, its, anxiety, blah, blah. And I said "No this happens every morning for years, I know its something physical". He did pause as I was leaving and asked if I had ever been put on An ssri and I said I would try a lower dose. Good night all! Deb, I seem to tremble slightly all day, and it does get worse after normal exertion.

HI, What exactly do they do for a tilt table. It sounds just like standing up, or is it different somehow? Thank you for any explanation!

Ok everyone, I need some advice. I am fairly new to this post and like many others have had to self diagnose myself through the years. I have as yet to be officially diagnosed with pots, but I think I may have the tachacardia kind. I am seeing a pots Doc next month. I have been taking xanax for anxiety and panic attacks which the panic is under control. However every morning as soon as I awaken, the moment I am conciously awake I start sweating, trembling and shaking. This morning my pulse went from 60 to 100 in a few minutes. My pulse rarely goes over 110, but I still feel very uncomfortable. Then I slapped on the blood pressure cuff and got a kind of high reading then, 126 over 95. Which fell to 102 over 76 after shower but pulse still high. At night in bed my pulse and blood pressure are low, but the real bad shakiness lasts all morning. I take 4 .5 mg xanax a day and have noticed that if I take 1 when wake up then another 2 hours later I do feel better sooner. Have not had much luck with SSRIS but trying to start on a very low dose of zoloft. And my primary care prescribed atenatol to try.(Beta blocker) I will have to try both separetly, as am like many of you, very drug sensative. Have been repeatedly told this horrible morning thing is anxiety, i Have to go through a whole slow process of getting up, showering, etc. ANYWAY, DOES ANYONE ELSE HAVE THIS PARTICULAR PROBLEM???? It is so crappy. I am keeping a log of my wild flucuations. I have had some basic heart tests . I have just always felt like something was not right, why can't they control my anxiety if that is what it is. I am also switching pysch dr, I need to get the "anxiety" under control. THank you again, Laila

Yes, Futurehope, I mispelled his name off the referral, but it is Dr. Ramesh Khurana, couldn't get the appointment till May!! Do you like him, how does he deal with you as a patient? I just was wondering if I should bring in my life story typed up so as not to stutter through the dozens of symptoms. Does he suggest certain meds, does he work with your primary care doc or just take over the complete pots thing. Did he suggest a tilt table? Sorry for all these questions, if you want you can email me at silhaughey@aol.com . Thank you if you have the time!

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.

Hi Merrill, Thank you for your reply and information. As for the bloodwork, it is the usually battery of regular tests, my thyroid has always been ok, she asked for sed rate, lupus,lyme, and rheumatoid factor, as well as i thinkmaybe some blood sugar and urine stuff. The first cardiologist I went to was an old fart, he did do the 24 hour holter, and echo, which both were ok. That was years ago. He said it was all ANxiety and that I should take more xanax, that "everyone who comes in here has this problem." I was very frustrated. THen about a year ago after my hysterectomy everything got real bad, and I was referred to another cardio doctor who did a one month event moniter, an echo, and a cardiac asthma function test, all normal. My current new lady DR. was about to refer me to a cardio but when I mentioned I had been she shut down, that was before the latest good appointment. Is a Neurologist the right DR. for pots? I have read that others were going to a cardio. Thanks again for your help. P.s. I have also recently quit smoking and drinking, which has actullay helped the anxiety but depression is bad!!!!!!!!!! I tried half a lexapro in desperation but felt awful. It is supposed to be a very clean, side effect free drug. Well I dont know. I have problems with all kinds of meds. This doc also gave me atenolol ( a beta blocker) but it kept me up all night, and I seemed to get wheezy. I have copd from smoking plus have asthma and my lungs are taking forever to clear out. Its been 2 months. I am 44. Bye now. Laila

Hi Jackie, I just found this support site, read your letter and couldn't beleive what you said because I could say the exact same thing about my Psychiatrist I almost fell out of my chair when I read your post!! After 8 long years of struggling to get a correct diagnosis for my health issues, I think there is some light at end of tunnel. I have had generalized anxiety disorder and major panic attacks, which are pretty much controlled soley with xanax. But I also have been dx with chronic fatigue and fibromyalgia but the feeling of tachacardia and near faintness has never been solved. Was sent to cardiologist, tests, ok. Never actually fainted but come very near to feeling, especially in stores or when trying to take walks. Have been so sad that the answer is always ANXIETY@!!! My pysch doc never listens to anything I say, just gets irratated with me because I can not tolerate any antidepressant I have tried, and yes I felt like I was a child being chastised because I would have to take more meds than prescribed at times, and he would act like it was my fault!! He is going to get ditched shortly. I will mail him info on this condition. I swear, he seems like a nice person but I could probly help myself more without a degree in stupidness. My PMC doc who I really liked, at least she ran a lot of tests left the practice and I finally started reading about pots on the internet, I actually asked a dr to check my blood pressure ( I was in for a sinus infection) while lying then standing ,I was almost in shock when he patted my hand, walked out of the room and said "I don't have time!!!) THis was a Saturday visit, but my golly is that what hmos have come to? I finally picked a new younger physician assistant (woman) for my physical, I had seen her once for sinuses, and approached the subject again about the horrible physical distress my body felt under, especially upon rising in the morning, etc. She kind of shook her head and said ANXIETY can take over your life!!! I tried again at the physical and bless her heart she did the blood pressure check, of course it was normal, but I tried being very calm and saying how long I had suffered, etc. she looked in my eyes and asked if I wanted to see a neurolagist for possible orthostatic problems.(AM now waiting for referral.) She acually also had a bunch of blood work ordered, I had also suggested being possibly hypoglecimic. I cant beleive someone actually listened!!! I am still not sure what and If I have pots syndrome but the symptoms sure are like Panic attacks. I think that not knowing was the worst thing of all. Bless this ladys' heart. AT least shes trying. I did however ask for an antibiotic for my sinuses after being there for 2 hours, she was running between patients, she said no I didn;t need them. HHHHAAA. Well now I have a flaming headache from waiting a week and will have to fork out more money, what a scam. Well, the important thing is at least she got me an inch in the right direction. More later. One day old on this site, maybe this is the end of the line !!!!!!!!!!!!!!Good luck to you.