yogini

I don't understand this research either. The abstract says that it applies to a "prominent subset" of the CFS population, which sounds like it means only some of the patients who stand out from the rest. Although I'm not as on top of CFS as many others here, the below research seems contrary to what I know - I've always read that exercise helps and haven't heard of organ failure or heart failure. I agree with the others that, if that were the case, CFS would not be so controversial. I have seen other research on the circulatory insufficiency in CFS, but the rest does not make sense to me.

Cardiactec, I had a really hard time with making adjustments to my medication, but going off florinef was one of the worst experiences of my life. I think there is a good chance your faint is a reaction to reducing your dose, especially since you haven't fainted before. You must have had a sudden reduction in blood volume. That doesn't mean that you have to stay on a high dose, but maybe you should taper off a bit more slowly? It took me 6 months to go off of 0.2. I did it 1/4 pill at a time every few weeks. Not that you need to go THAT slowly, but you could try 1/2 pill at a time and/or wait a couple of weeks before reducing. I'm really sorry for your experience and I hope it doesn't happen again! Feel better soon. -Rita

Morgan, That is great. I know how much it would mean to you to finally have a diagnosis! -Rita

Ernie, Welcome back! We were all very worried about you. Sorry you went through such an ordeal, but glad you're back home in your own bed...and enjoying home cooking! Rita

Do you actually go to the hospital often or have attacks when you need assistance? Do you have a friend or family member that you could call if this happens? I'm not sure I feel as strongly as some of the others about not telling, but you should tell only if you have a good reason and you really think they need to know in order for your safety. From your post I couldn't tell whether that was the case. The migraines would explain your not feeling well from time to time. If they don't actually need to know any more than this, maybe it makes sense to wait for a few months, so that you can see how things go and get to know your co-workers.

I'm really sorry to hear this. Melissa, hang in there. I hope your docs find a way to stop the recurring sepsis soon.

Between work and my job search I'm spread really thin right now and have had to spend the last 3 weekends in bed. I don't think I'll be able to make it this time either, but keep us posted. I'd love to come next time. -Rita

One other question - are you keeping track of how much salt you're getting? I eat a diet of fresh veggies, breads and fish/chicken, kind of like what you described. I was supplmenting my salt intake, but when I saw a nutritionist last year, I learned I still wasn't getting the salt requirements for a normal person (let alone the extra salt I need for my POTS). She told me it is really hard to get enough salt by eating those kinds of foods. I still eat fresh foods, but I have found ways to add a lot more salt to my diet. This is a big effort, bu has made a noticeable difference in my symptoms.

Hi Rachel, I'm sorry about your dilemma. Your history was very detailed, but I am wondering what meds you have tried in the past? It sounds like you played around with meds a few years ago, but have you tried any of the more recent meds like SSRIs, midodrine, mestinon or procrit? Also, it seems that your body may have changed since then (i.e. no more antibody), so maybe it's worth going back and re-trying some of them? It would be good if you could get to one of the main POTS specialists like Mayo, Dr. Grubb or Vanderbilt. Good luck - keep us posted on your journey. -Rita

Good luck Flop. I actually have 2 interview this week myself. One tomorrow and another on Wed. The process is nervewracking as it is, but worse when you add POTS to the mix. I know I'll be happy when mine are over. Let us know how it goes!

Wow, I'm sorry to hear that she has been in the hospital for so long -- but at the same time relieved to at least have an update on her. Could her doctors try calling Dr. Grubb or Mayo to get some advice on how to treat her?? Are there any meds that she hasn't tried that they could administer in the hospital, or even IV fluids? I agree with Nina - if she can't stand for more than a couple of seconds it could well be something more than just deconditioning. Let Ernie know we're all thinking about her.

For me, this issue is not even open for debate. With so many of us that have other family members with POTS, or other documented conditions which cause our POTS (like EDS), there is no way that POTS is in our heads or caused by thoughts. I have a documented BP of 90/60 my whole life - this was even before getting POTS and being otherwise completely healthy. I do agree with Morgan that some of us have underlying conditions which might be worsened by stress. I was definitely pushing my body to the limits when I got POTS and I blame myself for that somewhat. But then I see many other people my age pushing themselves to those same limits and not getting sick. This to me means that something is different with my body than other people. I think part of the problem is that people who aren't chronically ill just can't understand. I must admit that before getting ill I never understood chronic illnesses such as CFS. I remember having a classmate in high school with CFS and wondering why she wasn't "just" getting better...although I never would have had the gall to accuse someone that their thoughts were causing their illness. And your PT is a medical professional, so he/she really has no excuse. I did buy The Secret DVD and I think it is useful in some ways. I often find myself thinking negative thoughts worrying about having a POTS attack when many times it does not happen. I do think it would help me to think more positively, and this might be true for others with moderate POTS like me. However, I totally disagree with the medical portion of The Secret. It even goes so far as to say that people can cure cancer with positive thoughts - that is just insane! ABC News did a piece on it last week, and many doctors and others are outraged. I was able to ignore that portion and focus on the concepts in the Secret that would be helpful to me. I think the basic message iof the Secret s to visualize your goals and to take affirmative steps to accomplish them. I know I lose sight of this sometimes in getting caught up in my illness and also just basic life.

I'd love to meet up with you and could probably meet on the 7th if you're meeting in Manhattan. Looking forward to meeting in person!

I think lidocaine and novocaine are the same thing. Novocaine is a brand name of lidocaine (or maybe it's the other way around). I haven't heard of lidocaine without epi, so not sure if that exists. One of the downsides of epi is that tachycardia is a side effect. That's why it's a risk for us POTS patients, even though we respond well to some other vasoconstrictors like midodrine. I've had several cavities filled/re-filled and, yes, even a tooth extraction since getting POTS, all using carbocaine. I didn't have any adverse reaction to carbocaine. The only downside is that it is weaker and wears off quickly, so you have to get many shots (I usually get 6 per tooth) and may need more shots in the middle of the procedure. But once you are numb, you can't feel the additional shots. (Now, getting a tooth extracted while being wide awake was still a traumatic experience even if it had nothing to do with the anesthesia, but that's a whole other story). All this dental work makes me wonder whether I have EDS, although I am not flexible.

My POTS is also relatively mild, with flare ups, like most of the others who are able to work....but like you, for the first year after I developed POTS it took all my energy just to make it to work and back. My job is pretty bad and could be 80-90 hrs a week if I were "full time". After that first year, I decided I need more of a life and scaled my hrs back to 80%. That has helped a ton, and any flexibility you can have in your job always makes things easier. I'll echo what the others have said - the basic POTS treatments, like fluids, salt and compression hose are all key. I have tried to establish a routine where I do minimal cleaning (I have a housekeeper who does the heavy stuff every other week) and strategic cooking/takeout, like Poohbear. I know exercising can be brutal, but I found that exercising whenever I could gave me extra stamina over time. I literally started off at 2 minutes and worked my way up. One other thing that helped me at work was to walk around and do a couple of laps around the floor every few hours - it helps to practice walking and also counteracts the pooling. I was embarassed to do this, but over time it got easier and people at work even came up to me and commented that I was walking faster...I didn't even know they all knew I was sick, LOL! You may want to search on this topic, as there have been a lot of great suggestions in prior posts.

Are you eating lots of salt? Gatorade helps, but it is actually pretty light on salt in the grand scheme of things. I find I have to drink lots of broth and eat plenty of salty foods. And if adding salt to your diet isn't working, you may want to consider meds that make you retain salt, such as florinef. I used to drink tons of diet soda and gave it up for a while when I had POTS. But I've found it's really hard to keep up my fluid intake. There is only so much water a girl can drink. I do have a diet soda here and there, just to add some variety. But I mostly drink water or broth, which is high in salt.

Sunfish, I hope you are able to resolve your stomach pain. Glad you've been able to stay out of the hospital, at least. And Poohbear, good to see you posting again!

I remember Ernie participating pretty actively for as long as I've been on the forum, so I too am a bit worried. Is there anyone that has her number (or can look up her number) and call her to check in?

So glad to hear that it's probably not malignant. I wonder whether removing the mass will improve your POTS....hope so!

Hi Primetime, I am sending you a PM in response to your other questions, but I think the trick is to find the lowest level of exercise that does not make you so ill and work your way up from there. I know I mentioned it took me 1 1/2 years to work up to exercising, but for a whole year before that I did easier exercises. Can you walk for a few minutes each day or do stretching exercises? Or maybe even pilates for a few minutes each day? -Rita

It's called Hair Made. I think I found out about it on this forum. The sell it at lots of places here in the US, so hopefully you can get it over there too. https://www.thehairmade.com//Homepage.aspx

It took me six months to go from riding 2 minutes on the bike to go to 45 min on the bike and then another year to be able to do 45 min on the elliptical. Exercising upright is really tough, although I just discovered the trick with the compression hose recently after my latest crash. I must admit that there were a few months here and there during that time when I didn't exercise at all - and when I re-started I had to take a few steps back. But going slowly and steadily really worked for me. ! I didn't wear compression hose in the water - I believe the water acts like compression hose. Actually my HR has been in the 70s/80s when upright in the pool!

I've really been loading up on salt over the past few weeks since my POTS has been acting up. Sometimes I chew on my nails (without actually biting them) and I started noticing that my finger tasted really salty. I don't remember this before. I thought maybe this was one of the lotions I was using, but I just got out of the shower and tasted like salt even before I put on any lotion. I guess these days I literally have salt oozing out of my pores, LOL! Have any of you noticed this? or is it just me?

If you have time, pick up a copy of the Insider's Guide to Disney World. They tell you all sorts of great tricks like which park to go to on which day and how to make your way through the park to avoid the lines and crowds. These days I think there is a way to reserve your spot on rides so that you don't have to wait in line at all for some of them. I miss Disney World! I haven't been there in ages, but have many great memories of going there with my family as a kid. Enjoy your trip!

The upcoming weeks are extremely hectic for me, but I'd love to meet all of you. If we're going to meet in Manhattan, the Starbucks here are pretty small. There is a Food Court in the basement of Grand Central, which might be a good place to meet.