Clairefmartin

Welcome! I would ditto that its time to doctor shop. Get the TTT but try and find another cardiologist, look for an electrophysiologist, they are more versed in POTS (so mine says). Many of us have had doctors treat us badly, you have to remember and believe that they do not know you and are no reflection on who you really are - but I am sorry that happened to you. Good luck!

I am glad your Dr is ordering all those tests - my goodness I'd e freaking out if that happened to me! I have no advise or way to relate to paralysis what so ever, but just wated to say that I am thinking about you and good luck... cheers!

Hi all! I was wondering if anyone had experience with Zebeta (beta blocker), my doctor just perscribed it in a 5mg/day dose. I took Toprol 50mg/day a few years ago, and it lowered my BP, which made me very lightheaded, made my rainodes worse, and i was exhausted all the time, so I am a little nervous about the beta blocker thing. I just started Florinef .1 mg/day about a week ago, and feel good on it, except my tachy has been acting up. I tried reading up on Zebeta to see if it targets adrenaline related issues instead of high blood pressure, but all any of the info talked about was treating high BP...which I definitely don't have. I think I have hyperadrenic POTS, and told my cardio this, and he said he wanted to start treatment instead of testing me for more stuff, so I think he perscribed this based on the hyperadrenic assumption, but I kind of want to have the test done. I dunno....I always get freaked out taking new drugs...the nervousness alone that I'm going to react to it or swell up and keel over always make my symptoms worse i am quite neurotic at times Ay input would be appreciated...thanks!

I just recently (2-3 months ago) came home from work on medical leave because teaching was way too much to handle with my symptoms, I can't imagine how nursing would be! I am now taking an at home class to do medical transcriptions through www.careerstep.com, and love it. I have a biology background, so its fairly easy, and with a medical background it would be even easier. A good friend of mine has been working for a company called Spheris that hires directly through the career step program, and transcriptionists are badly needed right now. You make about the same as a teacher or nurse (depending on where you live and how fast you can type), and you get to work from home. Luckily my husband and I own an ecommerce business as well, which I help run from home. Just having the option of not going to work and avoiding that stress has helped my symtoms. Good luck and if you want any other info let me know.

I'm glad this came up, I was perscibed ativan a few months ago when my doctors didn't know what to do with me, and I vary my doage based on need. Some days its nothing, but most days its .5 to 1mg, and never has been any more than that. I have been concerned with the possibility of withdrawl issues, but figured i felt so crappy that if it helped right then i'd deal with it later. I find myself taking it most nights before bed to calm my pounding heart down, but hopefully i'll be starting a beta blocker soon which should take care of my tachy symptoms. I don't like taking any meds, but i agree that everyone is different, and is it helps me/you feel better, than so be it. I think its good to hear others opinions on all these various drugs we are all perscribed, but it can sometimes make it scarier to take meds after hearing other peoples bad side effects, when they may not be an issue for you. I went thru this with florinef, i almost didn't take it because i read all the horrible side effects people talked about, but i actually have not had any and it seems to work for me. Good luck!

I have actually been feeling great, I didn't feel spaced out, and had lots of energy today. I didn't get dizzy at all the entire day - what a relief! My heart still pounds and races though, so I think I will probably need to go on a beta blocker or something for that, but hopefully combined with the Florinef I'll keep my blood pressure up instead of bottoming out like I did when I used to take them. Thanks for all the encouraging words!

I am actually surprised at that - when I took Toprol I was so exhausted I slept 8-10 hours - and deeper than I ever had in my life! I am weird, oh well

Hello all, I have read thru the posts on Florinef, and took my first dose of .1mg today, and besides having a mild pre-headach feeling, actually feel great. I feel a little loopy, or "high", and kinda detached. Has anyone else experienced this from Florinef? I do feel better so I'm not complaining, I was just curious. Thanks!

I have an extreme reaction to novacaine, they failed to tell me that most of the time it contains epinepherine, and I was almost sent to the hospital because my heart was racing and I was having muscle spasms. Ask for lytocaine, it doesn't contain epinepherine. I would also tell the dentist your situation beforehand, and if they are not willing to work with you, go to another dentist. Good luck!

So I went to an electrophysiologist this morning, and was very nervous because of all my previously "bad" experiences with specialists. He was great!! He looked over all my stuff and test results, and said I don't need more testing done, I have orthostatic hypotension, and when I asked him about POTS he said yes, he was pretty sure that was it. He said different doctors definitions vary of what POTS is, but he said he was more concerned with proper individualized treatment than doing a new set of tests. So I start on Floronef tomorrow, and he said we may need to add more stuff, but to see how I do on it for the next month. I am so relieved...I know there is no magic pill or cure, but just to talk with a doctor who believed me and understood what was going on was great. He also said I can email him any time, which no other doctor has done. Anyways...thought I'd post a happy update

Please let us know what you find, I have a gluten intolerance (but came out neg for Celiac) and have never had my B12 levels tested, and I'm waiting on a DX too, it is an interesting possibility. Good luck!

i saw this too, and it was kinda scary for the reasons Meliss stated.

Welcome!! I would suggest bringing a few of the medical journal publications about POTS or dysautonomia to your doctor, mine appreciated it when I did, because he had never heard of POTS and never treated a patient with dysautonomia. He actually thanked me for them and asked to keep them so he could educate himself. But... I have seen other specialists who won't look at literature because their ego's get in the way, but it can't hurt to try. I agree that you should look for en electrophysiologist, and check www.potsplace.com for a list of physicians who treat the various dysautonomias. I was told I had anxiety for the last almost 4 years before it go so bad my Dr finally listened to me...so you're not alone! Hang in there and don't quit till you find someone to help you

Thanks for the imput - I will mention it to the cardio POTS guy I'm seeing next week and see what he thinks...I have already cut most sugars our of my diet, I can't eat gluten so that takes care of alot of it. When I cheat and eat ice cream or chocolate it gets worse, so maybe they are related. And who knows about the postpranial hypotnesion - I don't own a BP cuff, so I have to go to the Dr to get that checked, but it would be interesing to know if it was dropping after I eat. I was reading about it online and will check into it. Thanks again!

Ear Nose and Throat Doctor

Have you seen an ENT about your ears?? That may be a good idea for peace of mind. I have had minor vertigo since i had spinal surgery, its no fun.....i hope you feel better soon!

I was wondering is anyone else ever felt hungry right after eating a meal. This has been going on for some time, but has been especially annoying this past week. I eat a normal sized meal, and literally right after I feel hungry and almost sick. I also feel like my body has not been holding any fluids or nutrients (I have no proof of this, just a feeling), I am extra tired, constantly thirsty and drinking tons of fluids, but i never feel like its enough and on top of that have to pee constantly from all the fluids I also have been "crashing", where I feel like my blood sugar or BP drops and I cant move. Food seems to help, especially p-nut butter (my fav!!), so thats why I thought it may be blood sugar. I have always tested negative for hypoglycemia, but suspect I have it anyways. I have been extra short of breath too, more so than usual, I kinda lump that in with the extra tired feeling. Does anyone else get this?? I have had GI issues in the past so I dont know if its something autonomic I should go see my Dr about or its just another POTS thing. Thanks!

CONGRATS!!!!

I have to chime in agree here - I seem to have good spells and bad spells. I was being wheeled out of my classroom by the school nurse (I am /was a teacher) 2 months ago and couldn't function, and now I am working in the garden a few hours a day. A few years ago my heart rate was usually up around 145 when standing or triggered, now its usually between 100-130. My other symptoms cycle too, inlcuding GI stuff, that fuzzy headed feeling, and the shakes. I have to agree with Be Still - POTS = Confusion! Even for the doctors! Feel better soon

I get short of breath at weird times, and I also have 2 different types, that anxious out of breath thing and the elephant thing. I am still getting diagnosed with POTS so I have no clue what causes it. I was told I have "costochondritis" which causes severe chest pain and I think contributes to the SOB. my weirdest sx is getting SOB after I eat...I have no clue of its indegestion or POTS related, but is usually when I'm sitting down after eating. ??? weird. Hope you feel better......mystery sx are no fun!

Wow what a horrible experience! I hope you feel better soon ... think happy thoughts

Poohbear...keep fighting for your rights! Have you thought of getting a lawyer/advocate of some kind that can help?? I have seen soooo many doctors that have blown me off, and I have kept going to new doctors until I have finally (I hope) found the right ones. There is someone out there who will help you and will do it gladly, you just have to keep looking. Your symptoms are bad right now, and you have a right to care. I would seriously consider contacting a lawyer or even your insurance directly to tell them whats going on, and see what they suggest. Get a new cardio! Get a new PCP! THey sound like they stink. Hugs! I'll be thinking of you

I hope I have a completely bad day full of symptoms! I would be thrilled if they could see me at my worst....but with all my records I think even if I'm feeling good that day he'll be able to see whats going on. Thanks everyone!

Hi everyone, I just stopped crying a few minutes ago enough to post - it has been a roller coaster day! As you know I've been battling insurance to get coverage to go see a POTS sepcialist, and this afternoon I found out again that I was being denied to go to UVA. I was devastated - and on top of that my neuro said that my TTT showed no signs of "autonomic disfunction". I tried to tell her that they did the test wrong, and to please read the definition of POTS, and that I meet the criteria, even with the incorrect test. She told me she had "confidence" in the test and its results, and refused to read the info I wanted to fax her. Actually she wouldn't even call me directly, this was all done through her nurse. So onto the good news - before all this happened today, actually this morning, I decided to call my very first cardiologist for grins and ask if he had heard of POTS. I left a message, and his nurse called me back a little while ago, and said that he is very familiar with POTS, and would definitely like to see and help me. The nurse was soooo nice on the phone, I told her what happened with the recent TTT, and she agreed that it needed to be redone. So anyways, they are setting up an appt and they accept my insurance, and they are only 20 minutes away. I am so darn happy I couldn't stop crying. What a mess I am ! Thought I'd let you all know......

I hope you get well quick - and I'm sorry you had to go through all this Get well soon!