dizzyalmom

Hi, I have been recently diagnosed with POTS after 3 years of vague dizziness. I have seen my GP, 3 ENTs, my OB/GYN and a therapist. General idea was that I have allergies that caused dizziness that caused anxiety. I saw the therapist for anxiety, and said I was only anxious with the dizziness, and she kept saying, get the dizziness taken care of, something medical is causing it, and that will take care of most of the anxiety. First ENT said it was inner ear, deal with it; second said Meniere's or migraines, which did not fit my symptoms, OB/GYN said it was all anxiety, GP just gave allergy meds and Ativan, which did help on bad days, and finally third ENT called it Autonomic Related Vertigo and sent me to Autonomic Disorders and MVP Center in Birmingham, AL, where I live. I was diagnosed in April, and given Zebeta (I take 1/4 of a pill) and Klonopin (.25 mg). The meds have help so much. Though my main symptom has always been the vague dizziness, I have had chills, flu-like symptoms when really having a bad day, facial pressure/pain, night sweats, and just generally feeling sick and run down. That would last a couple of days in the past and showers and mornings were the worst. Since April I have had very few of those awful days. I still have night sweats with PMS, and cold hands at times. Today I had a bad day.... We went to church and I have always had an issue there, that seems to stem from being able to feel my heart beating against the pew after the standing in mass. When the anxiety was really bad church would almost cause a panic attack. Today is the second day of my period (sorry for TMI), and I guess that with being in church sitting/standing/kneeling just made for a bad hour. I am feeling better now, but just wish I know what triggers these episodes. It's like I will physically feel better in a few hours, but that fear of it happening again stays with me for days. I have 3 kids and took them to the beach 5 hours away this summer, alone, which is a huge recovery and I had been feeling normally most days, but today was bad. Does anyone have increaset POTS symptoms with PMS/periods? Any suggestions? I know I have not been good with the water this week, and even before this I did not drink alot, so the water thing is hard, but I try. I do have a mild case of this (no fainting ever, no bp changes from seated to standing), and it is much better that it was 2 years ago, and I did not even have meds then, so I am hopeful I will continue to have many more good days. Also, does anyone get facial and ear pressure/pain? I am still trying to figure out what is POTS and what is sinus/allergy issue. Also just read posts where people seem to develop heart problems with this. Is that common? I have no heart issues, great stress test results, normal echo, normal ekg in July, so does POTS progress to damaging your heart or other organs if its simply POTS with no other issues? I love this site, and thanks so much for any responses.

Hi Bren, I just joined, after being diagnosed with POTS in April. I take 1/4 Zebeta, or generic, which is what you have been taking I believe. I was incredibly tired and just felt bad the first 2 weeks on the beta blocker, but I called my doctor (Dr. Phillips in Birmingham, AL) and was told to drink tons of water and that I would get over that tired feeling as well as the feeling of being even dizziner. I stuck it out and do feel better. I also tak 1/2 of 5. mg of Klonopin at night, and the combination has greatly improved my symptoms, though it will worsen with PMS. I, like alot of people here, seem to be sensative to meds, and had even asked my OB/GYN nurse about Zebeta, she said it is a very mild beta blocker, so that made me feel better about it. I have not stopped my dizziness altogehter, but it's so much better that most days I do not even notice it. I do have only a milde case of POTS but it has made me feel really flu-like in the past and generally sick. Now I finally know that all the symptoms I had belong to POTS, but my worst symptom has always been the wierd dizziness. Hope that helps. I am new at this so I know nothing about any other meds just the ones I take and I pray they continue to work.

Hi! I have been lurking here since my diagnosis in late April, but just joined the site. I had seen several doctors before seeing my third ENT who actually knew what was going on. He saw that my blood pressure could increase (172/110 at his office) just from me being nervous (which is what always happens at any doctors office), and that, with the dizziness and ear pressure led him to send me to Autonomic Disorders and Mitral Valve Prolapse Center here in Birmingham, acutally where I live. My ENT knew about Dysautonomia because he had published a research article about it (Dr. Pappas/Autonomic Related Vertigo). I saw Dr. Phillips on April 28. I had the TTT, heart echo (laying and seated) and the stress test. I have a tiny amount of prolapse, but on the TTT the nurse said my blood pressure looked like I was about to fight for my life, and my pulse went up somewhere from the 80's to 129. I was soooo excited to have a diagnosis! At least 2 nurses at the practice have Dysautonomia, and Dr. Phillips is so nice and understanding. After my adventure with doctors who said I had ear problems, or migraines, and even seeing a therapist who told me I had anxiety from the dizziness, and addressing the dizziness would address the anxiety, I was so impressed with this practice. I was put on Zebeta (I take 1/4 daily) and Klonopin (1/2 of .5 nightly) I have felt much better. I even took my three kids on a 5 hour car trip to our beach house, which I would not have done in the 2-3 years prior to the diagnosis. I saw Dr. Phillips for a follow-up in late June, and we left the meds as is. I think compared to alot of people here I have a mild case of POTS, but it's enough to cause daily dizziness, but I don't have it much anymore. I still do have dizzy days, just not nearly as bad as in the past. My night sweats have stopped, racing heart is much better (would really only speed up when I went up stairs, or was up cleaning/moving alot), and that just strange indescrible dizziness is well under control. I could not believe this practice was here, and that I could have been helped sooner, oh well...at least I am better now. You will first see a nurse, who will go over the paperwork/questionaire and ask general medical questions, then you change into a gown for all the testing. The whole appointment took about 2 hourse, with a diagnosis and meeting with Dr. Phillips at the end after all the testing. I hate doctors and they really put you at ease; after my tests I saw others coming in with the "deer in headlights" look and I wanted to say it's not nearly as bad as you make it up to be, and in the end hopefully you will get some answers and something that will help. Good luck.