Clairefmartin

Hello! Wanted to say welcome and there is great info on the main page at potsplace.com about treatment options. I hope you feel beter soon and find the right drugs!

How annoying. My doctor was positive I didnt have lyme based on the ELISA test and the fact that I never had a rash when bitten by a tick. I read that 50% or people with lyme never get a rash! Doctors can be so frustrating. and the fibro situation does seem a bit sketchy, they can't figure out why I am in pain so they want to perscribe an antidepressant?? that is weird. I'm not depressed, my body hurts! BTW - who did you see at Hopkins...I'm from that area (my family still ives there) and have thought about going. Anyways....I hope all goes well and you get to start your antibiotics soon Take care! ps- what is MG?

Did you have an ELISA test as well? If so what were the results? Just curious. I just had the ELISa test done, my doctor said you confirm a positive ELISa with a WB, so since min ecame back negative we didn't get a WB. I read that both tests can have up to a 50% false negative rate... My doctor is now sending me to a rheumy to get evaluated for fibro, which has similar pain symptoms as lyme. Good luck! I hope you are able to figure out whats going on.

I get this too, and mentioned it to the UVA neuro I saw, and he said it could be due to being "naturally high strung" like my body was reved up, and that taking florinef could make it worse. I actually have cut my dosage of florinef in half since then, and these sensations have calmed down a little. I am high strung, but I am pretty sure that has nothing to do with it and was a little annoyed at that statement - but oh well I also have tried breathing techniques that seem to help alot... I am pretty sure this is an adrenaline related thing, and I am used to it now, I just don't like being woken up by it! If you search "shake awakes" we have discussed the vibration feling before on here. Good luck!

Me too! It has been a life saver for me...I function fairly well again. I do get tired, but the florinef and working out helps with that. Everyone reacts so differently to all drugs....I hope you find one that works for you.

I drink lots of V8 or Cambells tomato juice. I know some can't tolerate the acidity, but it has a high level of sodium and potassium, and is low sugar and carbs, so I prefer it to Gatorade.

Well I just got back from the doctor - and he thinks it's fibro because of my family history, but he's testing for a whole bunch of stuff including Lyme. We'll see what happens

Thanks for all the imput - it really helped me alot!! I am going to my PCP this week, luckily he is great and will refer me out to whoever I want, so I want to talk to him about all this stuff. I am sooo grateful for this site and all of you all - I would never have heard of any of this stuff without you. Anyways....I have read about Lyme and actually fit the bill, I asked my doctor about it before I got my POTS diagnosis, and he asked if I'd ever had a rash after a tick bite and I told him no - the only tick bite i know of was about 15 years ago. BUT- I have been a avid outdoors person and studied biology in college and grad school and was definitely in the woods alot. And I rode horses more than a few times. I am going to ask to get tested, it can't hurt. I have fevers all the time for no reason, and my lymph nodes are often swollen, along with the neurologic stuff it would make sense. Nina- I also have thought EDS or cervical stenosis issues/chiari malformations are something I should get checked for, but my joints are not hypermobile at all (in regards to EDS), except for maybe my neck, which is really bad. What type of doctor treats/diagnoses EDS? Thanks!! Have a good night

Hi everyone! I wanted to see if anyone had thoghts they could share with me...My POTS syptoms have been fairly conrolled for the past few months, so I have increasingly noticed all this other health stuff that is going on. I have been doing some research, and I feel like there is something else beside POTS causing my discomfort. I have a lot of overlapping syptoms, with POTS, EDS , Fibro, CFIDS, etc... and I was wondeirng how you all got your diagnosis for those types of disorders. I am in pain 24/7 with my neck and especially at the base of my skull (tender to the touch) along with my shoulders, and I have horrible joint pain all over. I also bruise really really easily, and have really bad chest/rib pain that I've been told is costochondritis. I am always exhausted, and need to nap on most days even if I sleep 9 hours at night. I just feel like my body is in agony all the time, it flairs up and is really bad on some days, but I have been ignoring it for so long I'm not sure what to do. My ANAs always come back fine, and I tested negative for Lupus and Sjogrens, and the last rheumatologist I saw said I just needed more sleep. I am very grateful to be doing so much better with my heart rate and dizziness issues, but I am sick of being in pain. I know there are lots of people worse off, so I almost feel like I shoudl just keep ignoring it, but some days I just want to feel normal again. Anyways... any input would be appreciated. Thanks!! Claire

Nina ~ I hope you are feeling better soon!! You will be in my thoughts Claire

Hello IHB (you picked a funny name Madeline !) Welcome!! Just wanted to let you know that I got sick of bananas too - and I take Florinef, so now I'm on a V* kick, it has tons of potassium and sodium. I am sick of pickles as well as bananas, I need to find a new salty snack too

I am taking a low dosage of Florinef, andmy doctor has never mentioned adding Prednisone or anything else ever. I do not have candida...I was wondering why you are asking? Is this known to be a side effect with Florinef? Good luck!

Congratulations!! I am also glad to hear you are feeling better - best of luck!

That is wonderful Kim! I remember reading your posts about youru cardio- I'm glad yuou have support to fire that guy. What a jerk! yeah, I chickened out last night and didn;t take the Buspar, and also didn't take andy Ativan, and slept fine and felt ok this morning. I look forward to therapy! Have a good day

Thanks for the input.... I took half of my perscibed 7.5mg dose and it knocked me out and made my vision shaky. I felt weird. I hate taking dugs...I am talking to my husband about ditching the Buspar and going to see a shrink instead to learn how to cope with the anxiety. I still haven't decided if I'll take the second dose for today...we'll see. Hope you all have a good night!

Hello everyone.... Its been a while since I've posted, mostly because my new med regimen seems to be working on most days and i've been feeling pretty good - except for the extreme anxiety I seemed to have developed through this whole thing. Its been pretty bad, I am super anxious whenever I go out anywhere at first cause I don't know if my symptoms will start up while I'm out alone. So....I went to a psychiatrist and she diagnosed me with anxiety disorder secondary to a general health condition (dysautonomia), and was very nice and knowledgable about autonomic dysfunction in general, and she was excited to read the recent Grubb publication I gave her. Anyways...she wants me to start Buspar and ramp up the dose slowly, and try to be Ativan free soon. Has anyone else taken Buspar? Any thoughts about controlling severe anxiety? I am sick of being consumed by panicy feelings, even if they are "secondary" or caused by POTS adrenaline surges. I know benzos are not long term solutions and am excited to try an alternative, but I am nervous as always about starting a new drug. Thanks - hope everyone is feeling well Claire

Me too! Never had anxiety before my heart rate started doing crazy things at the age of 24, and since then dealing with all the health stuff that has followod has increased my anxiety big time. I NEVER had anxiety or depresion before the onset of POTS, and I have had other stressful events in my life.

I could not tolerate Zebeta - I had one continuous anxiety attack for almost 10 hours, it was horrible. I am on Toprol XL though, and have no side effects except slight loss of energy. I am taking Florinef though, which seems to help with the energy issue. I get anxiety whenever starting a new drug as well.....sometimes its hard for me to tell if its the drug or my natural tendancy to freak out with new substances in my body Good luck! Claire

Me too...especially since I havent had an echo in 3 years. I may mention it on my next visit. Does anyone know if MVPs show up during a TTT?

I have done lots of drugs in my short life (unfortunately I was a BAD teenager) and told all my doctors about it. They all said it had no cause or effect of any kind on my POTS or any of my current health issues. I think my memory has suffered a bit from my past activities, but thats it. That doctor was being silly

I'm on a low daily dose of Toprol (25 mg), and it decreases my tachy episodes dramatically. I have never heard of taking BBs when needed, as my doctor said that your body needs to adjust to them, and when going off you have to slowly decrease the dosage to wean off them. Were your CCBs working? What did your doctor say was wrong with taking them long term? BBs lower blood pressure as well, I had issues with that a few years ago when on Toprol alone, now I take Florinef as well and it raises my BP enough that I feel fairly stable(most days). Anyways...good luck and I hope you get some answers!

Juts wanted to let you know you are not crazy!! I hope you find answers soon and feel better

I get the same thing...... I wake up with muscle and joint aches every morning, and they wax and wane throughout the day. Thsi happens no matter what my level of activity is. I figured it was related to POTS, but recently since most of my other uncomfortable symptoms have stabalized, I have been thinking about going in for EDS testing or fibro, i have alot of those symptoms as well. Good luck! Hope you feel better

amen....it is so frustrating to not know if you need to go the ER or not - the last time i went all i needed was salt and fluids, and probably not via an IV..... but i guess its better to be safe than sorry! heart issues are especially scary, and no one wants to mistakenly attribute something to POTS when its a real emergency and can cause permenent damage - so you did the right thing! good luck with the EP, mine has been way more knowledgable than my regular cardio, so much that i don't even see the regular cardio anymore

i agree with sky - learning the little daily things to help manage symptoms has helped me tremendously. i also want to ditto what jacquie said about talking with a therapist - i know it can be expensive, but i think its worth the money! its is a huge transition from being an independent helathy person to dealing with a chronic illness and all that is associated with it. i also think its important to guard your mind, and avoid engativity. i get down and scared when i read too many horror stories about what POTS and other dysutonomias can do to people, and found that it was influencing my mental state ina big way. everyone is different, and this disease is so unpredictable (so that means things could get better just as quickly as they got worse), so i think there is always room for hope:) good luck!! hugs