yogini

Hi Blackwolf, I am still having similar effects after reducing my atenolol about 10 days ago. My HR seems to still be lower than what it was on the higher dose. (I will say that it has come back up a bit from when I posted the other day, though.) Also I am a lot more tired all of a sudden. There are a couple of other factors that might be affecting me (my period, etc.) so I am just going to wait a few more days to see if it gets any better. My doctor agreed that the reactions I am having are opposite to what is supposed to happen. She also said it wasn't dangerous. That's great and all, but it doesn't help us feel any better! These medicines are so screwy. At least we are in the same boat together, otherwise I would wonder whether I was imagining it... Hope you feel better, and keep us posted on how you are doing. Do you think you will keep reducing the beta blocker if your HR stays low? I am deciding what to do about that. -Rita

Thanks for your responses, they have helped to keep me calm. I agree that the reaction does not seem typical. Fortunately, the nausea seems to have subsided. My HR has ranged from 60-130 today. Usually it doesn't flip flop so much and the only time it has been in the 60's was when I had high BP in the fall. I've checked my BP and it seems to be OK. I am trying not to worry about the numbers and just how I feel (which, unfortunately, right now is pretty crappy)! I will take your good advice and keep up my fluids, salt and protein. Hopefully a good night's sleep will help too. I also think I need to be patient as my body may just need time to adjust to the medication. It is hard, though. And still haven't heard back from the doctor. P.S. Emily, you are in my thoughts and I really hope you recover from your surgery soon...

Hi everyone. I was taking 37.5 mg of atenolol (1.5 pills) and just reduced my dose to 1 pill last week. I felt great at first, but am feeling REALLY crummy today. It reminds me of the day I forgot to take my beta blocker (I am sure I took it today, tho). I mean I feel nauseous, exhausted and weak. My symptoms have been pretty moderate lately and I haven't felt this bad in months. So I am pretty sure it's related to the medication. Has anyone else had these withdrawal symptoms? Will they go away after my body gets used to the lower dose? The funny thing is that my pulse right now is in the mid 60's which is lower than usual. Since the BB is supposed to lower my HR, I am not sure I need to go back up to the higher dose. On the other hand, my HR is jumping around quite a bit when I walk which it wasn't before. I have a call into my doc, but not sure what to do in the meanwhile. I am just so confused. I was hoping to go off the beta blocker entirely and take it as needed, but now I am not so sure I am ready for this. Thanks, Rita

If the question is whether we think it will help POTS, I think I have read an article or two where leading doctor(s) said they think it could potentially benefit dysautonomia patients in a big way. I imagine that this would especially be the case for those with a genetic link. I think it may be a while before we see any treatments, though, due to limited funding. I also support stem cell research. Since Michelle doesn't want us debating politics (and rightfully so), I will end my post here!

I think what has helped me is to keep setting very small goals for myself. At first it was something as little as taking a few extra steps, sitting up for a little while longer or eating a few extra bites. It then graduated into walking for longer periods, trying different forms of exercise, going to the store, etc. Sometimes I haven't met my goals, I got sick trying to do so or it took me a few weeks or months to get there. But it helped me to feel like I was trying to move forward little by little.

Katherine, You give so much to this site. I just wanted to say that I'm sorry you're under the weather and hope you feel better soon. I understand how you want to be med free - I may be doing my own experiment of going off my beta blocker soon. But if you need the Prozac to get by right now, then that's perfectly OK. It's great that you've found a medication that's so effective at controlling your symptoms. Hope it kicks in soon!

Hey Patti, Not sure I have an AAA store nearby. What's the name of the bracelet your daughter has? I have heard of the Bioband, which is around $10, and the Relief Band, which is around $80. I have mild nausea from time to time, so I am thinking of getting the Bioband, but only if it really works... Thanks, Rita

Roselover, I agree with Gena that it could be the beta blocker. Another thing to consider is that your body may be reacting to reducing the florinef. Our bodies are very sensitive and react to any change in medicine more than the normal person. On top of that, florinef is a really powerful steriod, even tho we take it in small doses. I am not sure how long you have been taking it. It took me several months to figure out how to reduce the dose without triggering my symptoms. I first tried to go off it 1 pill at a time, my POTS flared up really bad. Finally after 3 tries, I tried 1/4 pill every 3 weeks and that worked. It may be that your symptoms will subside on their own after your body reacts to the reduction in dose. In the meanwhile, I would have lots of salt and water and wear compression hose to keep up your BP. Anyway, I hope you are able to talk to your doctor soon. -Rita

Merrill, I totally know how you feel. I have gained 3 sizes and don't fit into any of my old clothes. I thought it florinef I was taking, but I have been off it for 3 months, so it must be the beta blocker. I have been exercising and eating well, and it hasn't helped. It is so hard, especially as the warm weather approaches. I mean who wants to show any skin in this shape! I am in the same boat as Amy. The BB has enabled me to function so that I have to live with the side effects. I have been on it for a year now, and the fatigue has gotten a lot better. Also, my doc has suggested that I wean off of it and start taking it as needed, which I am considering. I am not sure if this is an option for you. Anyway, I hope that you can find something that works for you and that your trip in POTS hole is a quickie! -Rita

Ernie, I am late in responding, and the others have already captured my thoughts. C'est incroyable!! I am so sorry that you had to go thru this, and I think you are handling it very well. You have many friends on this site who believe in you. I hope your other doctors can get to the bottom of things. -Rita

This was a big problem for me. When I first got sick, I felt really dizzy and spaced out whenever I went to any store or restaurant. I think it was like sensory overload. It really made me want to stay at home all the time. There are a few stores that I like to go to on my block, which were the only places I could walk to for a while. I think by going repeatedly over time, my body adjusted to the overstimulation and this symptom is almost gone.

My cardio put me on .1 tablet once a day a couple of weeks after getting sick, which I think is the recommended starting dose. It was later increased to .1 twice/day. The florinef really did help me, with minimal side effects. But my cardio didn't tell me that I was supposed to have high salt and wear compression hose on top of the florinef. I later saw a POTS dr who told me to add these, and I wound up with BP spikes and had to wean off the florinef. I now manage my condition with salt, compression hose and beta blocker.

Linda, one other thought I had - since you live in Buffalo, you may want to consider going to the Cleveland Clinic or to see Dr. Grubb if you are near Ohio. Both seem to be highly reccommended by others on this site - maybe they are closer to you than NY. Radha, I would be happy to try calling for you, but sometimes I have trouble getting through too. If you keep calling you can usually get his assitant in person, which is better than leaving a message. If you send me an email, I can also get you the email addresses of his assistant and two residents that work with him, who are pretty good about responding immediately. As for the other doctors mentioned, I have tried calling Dr. Weimer at Columbia and I was told he is not taking new patients. Dr. Stewart at Valhalla does see people over 19 because he agreed to see me and run some tests, and I am well over 19. I decided not to have the testing because I would have had to go off all my meds. Also, I think I would be more comfortable discussing this topic through private email. -Rita

I live in New York. My main POTS doctor is Dr. Horacio Kaufmann at Mount Sinai. I am actually on vacation in CA right now and was quickly checking messages, but I would be happy to talk to you about doctors in the NY area when I get back later in the week.

Morgan, Good luck to you and your family. I hope everything goes smoothly and you'll be in my thoughts. -Rita

I guess this is the call you've been waiting for. I'm so happy for you and hope you finally get some of the answers you deserve. Keep us posted and bonne chances (hope I spelled that right)! -Rita

Morgan, you are too funny. Briar, I don't think you're gruff and appreciate all of the info you provide on the site. I also know what you mean about not being able to respond to all of the posts. There is no way I can, read, let alone reply to all the posts, even though everyone is in my thoughts. On the outreach effort, that is something I would be interested in working on too, if I have enough energy left after getting my grocerice, LOL! I wonder if it might make sense to start with health-related channels (like the Discovery Channel) or someone like Dr. Sanjay Gupta from CNN (my favorite). Maybe there should be a DINET outreach committee... -Rita

Karyn, how does Nutrasweet make your symptoms worse? I'm wondering because I have had a a lot of diet soda over the years. I just did a search on google and found that tachycardia is a common symptom of Nutrasweet, which I didn't know. That is very interesting to me, because I was otherwise healthy and have no family history of dysautonomia. I can't do anything about the past, but I guess I can try cutting it out to see if it helps. -Rita

I think the problem is that we've all had the misfortune of getting a serious, debilitating illness that is pretty rare and somewhat invisible in the sense that it doesn't really show up on medical tests (other than the TTT, of course). So our lives are severly impacted, but it is hard for the establishment (doctors, social security, employers, etc.) to see it because many of us "look normal" and our tests come back normal. The rareness, "invisibility" and the fact that it isn't generally life-threatening also makes it harder to get funding for research, etc. It is very, very frustrating for us patients. I hope (and think) that Morgan is right that over time POTS will become more recognized and better treatments will be available. Hopefully this will be in our lifetimes. I haven't had the greatest experience with doctors myself, and I agree (and most of us probably agree) that doctors need to become more educated and a lot more sensitive to POTS patients. I can't make any generalized statements about POTS doctors, because I have personally seen only a couple of these doctors. What worries me is that lately a few people have posted that they don't want to see a particular doctor because of some of the posts, and I don't think this is a good result. Although there are clearly areas of improvement for many of these doctors, their testing and advice is probably worthwhile for most of us nonetheless. Anyway, just my two cents. -Rita

Hi Tearose, Sorry I didn't respond earlier, but I am really behind on reading posts. You are such a trooper. I am glad you survived the surgery. I had a couple of benign breast lumps removed back in college, so I can relate to your experience. It is especially weird to have local anesthesia and be awake during the surgery! Also, thanks for also posting your question about whether the heart rate monitor is related. I had already started to cut back on the use, and this is another factor to consider. -Rita

Congratulations, Nina. I am always amazed by all that you're able to juggle. (I would have chickened out and asked for an extension! ) Enjoy your well-deserved rest! -Rita

I took florinef for about a year. I started with one pill, went up to two pills. It did help me a great deal with my symptoms. I did have some side effects. When I took it at night I had trouble falling asleep. I switched to the mornings, and sometimes I would have mild nausea and also got headaches. I was on (and am still on) a beta blocker, and it does not help with the side effects. But all in all the side effects of florinef were pretty bearable. I eventually went off of it because my blood pressure started to get too high. It took me several attempts to get off of it, and that was the worst part, just awful. Luckily, I am now able to keep up my BP with just salt and compression hose. If you are able to do this, then I would not try florinef. But if these aren't enough to keep up your BP, florinef might be very effective. -Rita

I got mine from brightlifedirect.com, which has a big selection, free shipping and no tax. Last year I paid for them on my own. I used brightlife's generic brand (I think it's called Allegra), thigh high, because it was a lot cheaper. It seemed to work well. I got new health insurance this year which actually covers 2 pairs of hose. So I switched to Jobst, which was prescribed by my dr. and is a lot more expensive (but free w/ insurance ). Jobst is much more comfortable than Allegra and is also machine washable, which is a big plus. Anyway, I think both brands have done the trick for me and hopefully any brand you try would work. Bright Life's website has a tape measure you can print out to measure yourself. There is also a guide to which size you should buy for each brand, based upon your measurements. This is helpful even if you decide to buy from somewehre else!

You may want to talk to your dr about trying florinef or licorice root. Both help the body retain sodium.

I don't take birth control pills, but I think they make you retain water? If you are retaining less water on a lower dose of the pill, that could lower your BP and make you tired. Just a thought. Have you lost weight or has your BP gone down since you started the new pill?