ellen

I'm learning how to post. I just wrote a long post but was careful to add spaces at the end of the sentences, so the text wouldn't appear too dense. They were eliminated when I pulled up the post from the forum. Where did they go? I tried adding periods to hold the space ..... but they were automatically compressed! When I hit the TAB key, to try a new paragraph, the whole thing got posted! Now I am afraid to use the tab key. Could some tech savy poster give me some help? Thankyou for your patience. --Ellen

Gena, I have one recommendation, which you might talk to your doctor about. When I had surgery, I was told I would have to have a tube of blood drawn the morning of the surgery (which was scheduled for 7 am Monday). . I know MY body does not recover quickly from a blood test, so I asked if I could do it the day ahead, and was told it could be done at most two days in advance and the blood lab is open on Saturday only for one hour at 6 am. , closed on Sunday. I gladly went in on Saturday to do the test. . . I arrived Monday at 5:30 am for my pre op and was told they LOST my blood work and they cheerfully told me I would have to repeat the test. This blood is only required in case of the rare emergency that I would need a transfusion. . . I calmly told them they would have to cancel the surgery because I couldn't take the chance of going into shock from a blood draw after 12 hours of fasting. Surprise! they called downstairs to the lab and found it. . . They were willing to send me down to do it all over again, rather than pick up the phone and make a phone call !!!! . . My surgery went smoothly and I learned a lesson- you have to be your own health advocate. Good luck !

I have been on florinef for 8 years, and I love it! Initially I also felt "wired", and had fasiculations (little muscle twitches), but eventually it calmed down. If I miss a dose, I can tell before the day is over, or if I don't have any salt in the morning, I also feel weak within a few hours. It has been a great help to me, and I hope you have the same results.

Rhonda, that's so interesting- I also felt GREAT when I had to take prednisone for allergies-like you, I had allergies, asthma, then low thyroid all following the onset of POTS in 1992. I hope you find a doctor who will work with you. -ellen

Dear Mary, with all you are going through, it is perfectly normal to have messy house! If your friend is coming for a break from her situation, she won't care about the house. I hope you can find support and comfort in your time together.

Yes, Thankyou! That is so encouraging!

Dayna, I know EXACTLY how you feel. My allergist was the first understanding doctor I found, he knew immediately from talking to me that my head was so stuffed that I couldn't think clearly. He's used to seeing this in allergy patients and was able to ask the right questions, so the responsibility was off of ME to explain why I came to see him. I hope you find a doctor who has this skill. Don't be discouraged by people who don't understand why you're not well, eventually you will find an answer. There are many of us here who have had the same experience.

Ash, I had a total abdominal hysterectomy which went well because I told my docs repeatedly that I have low blood pressure. My PCP advised me to take a double dose of florinef beforehand, to raise my BP, which I did. I told the OR nurses that I faint easily, and sure enough, when they started the IV, I could feel my blood pressure drop. They were very responsive, elevated my feet, gave me oxygen and got me back to normal before the surgery. When the surgeon arrived, she condescendingly asked, " Are we nervous this morning?" (she assumed I faint because of fear). Don't pay attention to those kind of comments, most people don't understand POTS. I had no trouble with the anesthesia ( I also told the anesthesiologist that I went into shock on the operating table years ago). As far as recovery, I was on a morphine drip, which is controlled by the patient, so I had complete control of how much pain medication I received. I'm convinced it went so well because I INFORMED everyone who worked on me that I have a problem with fainting. Good luck

Michelle- I understand and appreciate your concern- e

Thankyou Michelle, you are so right. I shouldn't have said anything other than check with your doctor- this is really the only way to know what's safe for you- ellen

Inc, I'm no doctor, but epsom salts does not sound good me. I use that to soak sprained ankles. There are so many products like Metamucil, Fiber Choice chewable tablets, flax seed, stool softeners, prune juice, etc., available in the drug store, all of which I can recommend (I have tried them all). If you have tried every thing you can find at your drug store, talk to the pharmacist.

I take my blood pressure often and I think I have noticed a correlation between my readings and my symptoms. If I have a large increase in pulse after standing, I feel more fatigued that day. Sometimes I have smaller increments, (yes, sometimes less than 30 bpm) and I feel quite energetic. I like to have objective data to help monitor my condition, rather than just wait till I feel really weak, then go to the doctor with " I don't feel well". Usually at that point I have such brain fog that I can't communicate well, and I sound like a whiner. So I'm being proactive. (I've had this on and off since 1992 ) -ellen

Julie, I take my blood pressure often, and record the date, time and results in a notebook I keep in my nightstand. If I don't like a reading, I take it again. It doesn't cost anything. It doesn't hurt. I usually take a reading while lying down, then take several while standing, over about five minutes. My BP monitor records up to 8 consecutive readings. Eventually I'll have a log of information which might be useful in understanding my POTS better. I think if you take it more often it doesn't cause anxiety (you get used to it ).

[q The thing that concerns me is that if I ever have a bad reaction and need the epinephrine I don't know how I'd react. All I know is that I have bad tachycardia if I use Albuterol (for asthma) epinephrine would do me in. I had shots for 5 years, and was greatly improved. I now only take Clarinex occasionally (for more that six years). I did (still do) have the same 'tachy' reaction to Albuterol. I only reacted to the shots once- I started sneezing in the waiting room ten minutes after the shots and they called me back in and gave me a shot of epinephrine Definitely unpleasant tachycardia and shakes, it took me a day to recover from the fatigue. But that only happened once and the benefit of being semi-cured of allergies outweighs that one episode. I did request to be seated for the shots each time, since I have a history of fainting, and the nurses were very happy to accomodate me.

I would be very interested in anything you can share with us from your appointment!

That is such a cheerful picture! Thankyou!- Ellen

claire- congratulations, and thankyou for sharing this story with us. It's so easy to give up when an "expert" says he can't find anything. I'm so glad you didn't give up !

Kidding aside, how about some heat in those frosty exam rooms?! The last time I went to the cardiac electrophysiologist, he and his nurse both apologized for the heat (it must have been 76 degrees). I was so comfortable!

Blondie- I live in Tucson, Az. Last time I went camping up to 9000 feet (much taller than PA mountains), I was so short of breath, I had to be taken down the mountain for relief. I was so disappointed, and embarrassed; we have been camping for years and I felt like a wimp. But I think Pennsylvania doesn't have anything over 3500 feet (Mt. Davis is 3200 feet). I think you should be ok, the elevation for those mountains is so low, they don't even record them on my map! I hope you have a wonderful time!

Whenever I get an adjustment from the chiropractor my back makes a big "crack" sound, and if it doesnt crack, he'll do the adjustment again until it gives a crack. The same with my neck-does being "crackly" have something to do with dysautonomia?

We just received our brochures last week - they are very useful, thankyou Michelle!

I too, push myself. Giving in and giving up does not make me feel better. I really feel better with a reasonable amount of exercise and rest. But only you know your body, and you have to pace yourself. I do not react well when someone other than me says "push yourself".

YES- when I walk down the hall I crackle- my ankles are so loud, there is no way I can sneak up on anyone.

Lulu- Exactly! I think I 'm normal, I act like I'm normal, then I crash. THEN, I remember, I shouldn't have done that!

Kristen, No, I was never diagnosed with CFS, it wasn't widely recognized back then (1992). I had a bad "flu" which turned into asthma, allergies, a constant sore throat, overwhelming fatique, memory loss, 14 hours of non-refreshing sleep, fainting, hair loss, etc. I went through 3 doctors who couldn't find the cause of my illness. When one doc said "if you keep complaining about fainting, I'm going to have to tell the DMV!" I didn't want to lose my license, so I stopped seeing him. I was home with my young children at the time, but I could NEVER have worked ( as a software engineer). After about a year I got better, but just learned to manage my fainting. Every time I had a physical, they couldn't find my blood pressure because it was so low, eventually I had a new doctor who recommended Florinef, which was like a miracle cure for me and I've been doing ok on it now for 8 years. I tried Mitodrine a few years ago, but it made me feel like someone said "BOO!" (adrenaline surge?). I have developed severe allergies in 1994(5 years of immunotherapy), asthma (albuterol inhaler occasionally) and low thyroid (10 years ago). And I have bouts of fatigue, like everyone here, but I am much better than I had been! I asked my PCP about POTS after he told my husband to check his blood pressure regularly, so to encourage hubby, I began taking mine. I noticed my bp dropped and pulse increased when I stood up. He sent me to an Cardiac Electrophysiologist who confirmed my suspected diagnosis as "classic POTS".