jenwic

I've had it to. Sharp pain in the bladder that comes and goes. I've had UTI's before but this is different. If I am dehydrated then pee my bladder will burn but after I drink a glass or two of water it goes away.

Gary, I had to add my agreement about the withdrawl thing. I tried to go off Florinef and almost died. I was so sick I couldn't sleep, bathe myself, or hardly eat more than a few bites for 2 weeks. My heart raced constantly, day and night, and my blood pressure skyrocketed. This was after missing ONE pill then reducing my dosage from a whole pill to half a pill. The dr. added Zoloft which only confused the matter and made me feel worse. Then they put me on a benzo which didn't even touch it. The combination of weaning off medicines while adding new meds into the mix can be unbearable.

I have been experiencing a new symptom. My hands occasionally tingle. What causes this?

I also get this kind of feeling the time around my period. I have only started doing this the last year or so. I feel really anxious and, although I have no idea what attention deficit really feels like, I believe that is how it must feel. I can't concentrate even to read or watch t.v. and noise gets on my nerves really bad. I feel jittery and high strung.

I just wanted to add that after I started Florinef I had more of these added or skipped beats for a month or two. I mentioned it to my dr. who discounted it, but I know my body and it was totally related to the med. It did stop after my body adjusted to the med. I do have occasional added beats (PVC's) related to circumstances similar to those listed above.

Happens every night when I lay down. I notice it when I lay on my side.

I was diagnosed by an electrophysiologist in Cincinnati (50 mi. away)

I was carrying around an abcessed gangreene appendix for several months. They kept putting me in the hospital with IV antibiotics because they didn't know what was wrong with me. I would feel better for a few weeks then the abdominal pain would return and I would be back in the hospital. One night my heart started flying and pounding. Mom took me to the ER and my HR was 160 or 170 I think. They tried all kinds of meds to get it to slow down with no success. I was admitted for a few days for observation then my HR slowed down some so they sent me home. Five months after my initial abdominal pain, I went in for ovarian cyst removal which they thought was causing my pain, and while in there discovered the gangreene appendix. My life has never returned to "normal". I take Florinef now but would like to go off it and try something else.

Yep, me too. The fever can be there one minute and gone the next. If I am already sick, just my heart rate being up after a meal can make my temp. go up. Then it goes back down after the food is digested.

I've been thinking about this for a few days. I wonder if it could be the ammonia or peroxide that causes the problem. I know there are no-ammonia types. Today I saw a "Natural Instincts" loving care brand with no ammonia or peroxide (it might not lighten my hair though). I might try one of these. It's hard to know if it is the smell or the chemical. I do know that even after I rinse it out, my heart rate is up some for a few hours.

The worst of the feeling went away in less than 10 minutes, but I felt "off" the rest of the day (heart rate up some and my left hand still felt a tiny bit tingly from time to time). It was like it stirred up my nervous system. I still believe, like northerndarlene, that it was the chemical getting into my bloodstream that did it. I have asthma and it didn't get stirred up by the smell like I do with some strong smells. My natural haircolor is darker than what I've been coloring it so I think what I am going to do is when my roots start coming in I will get someone to use foil so the chemical doesn't touch my scalp and put a few highlights through the darker color. That way I can go back to my natural color more gracefully. I may use the no ammonia kind of color to do the highlights. I hope to never repeat what happened yesterday.

I will have to try the organic kind. By the way, when the symptoms hit me was about 7 minutes after I applied it and was sitting at the computer, so I doubt it was the hands above the head that caused it. Sophia3, my hair is really fine too and has about 25% gray so I really need some color. I was considering highlights. Do they do them so the chemical doesn't touch your scalp?

I am very sensitive to different medications so I guess I shouldn't be surprised at the reaction I had to hair color. I have been having episodes for about 6 months where my heart rate will pick up after applying the color. I have switched around and was doing ok with the 10 minute hair color- until today. When I put it on it was burning a little but I didn't think anything because it usually does, but it was a little worse today. About 6 minutes into it, my heart started adding (or skipping?) beats pretty often so I decided to go rinse it out. Then my heart started really racing and pounding. My hands felt tingly. I rinsed it out as quickly as I could and my heart rate came back down within 5 minutes. I still feel shakey and "potsy". Great! Now what am I going to do when my roots start coming in? I think I've tried all the haircolors. I hate this POTS!!!!

If I'm sick or have had a stressful day my HR will be up when I first lay down. If I lay with my arms folded above my head and exert some pressure on the top of my head for a few minutes (5-10) I will relax and my HR will come down. I read that it is supposed to release some calming chemicals through your body. But if I have a virus my HR will stay up for days and seems worse, maybe more noticeable, at night.

"Brain zaps", that is the first time I've heard that term and it describes exactly a feeling I've had that I wondered if anyone else had.

I didn't know where to post this question, but I tried to upload my picture and it said the photo had too many pixels. At the bottom of the page there was a comment that said "image scale on"- this will change the picture if it has too many pixels. But you couldn't click on that statement.

I've been reading a lot of posts about mast cell topics and flushing. I have occasional flushing, but it is almost always a result of emotions/excitability. What causes the type of flushing associated with mast cell activation problems?

Sometimes Tylenol helps me when I have a virus (even if I have no fever or pain). Also, lots of fluids.

I had my potassium level checked the night I ended up in the ER after I took the first Zoloft. The dr. said it was a little low but not too bad (probably from my heart racing nonstop for days, he said) so he gave me one potassium horse pill tablet to swallow. I also had my potassium checked for a couple of months off and on when I first started the florinef a few years ago and it was fine then. I tried Singulair two different times and both times I woke in the middle of the night with my heart racing, adrenaline surges, chills and shakes, and runs to bathroom with diahrrea due to heart rate being up. I couldn't tolerate it. I used to be on a different, older medicine similar to Singulair but my current allergist won't let me take it because she is afraid of liver damage since I'm on steroids ( I don't understand that) so she put me on the Pulmicort. Before my POTS diagnosis I went through a bunch of test on all my glands and they all came back normal. Thank you all so much for your input. I am going to search on line for info on the topics you brought. I would love to get off of the florinef if I could.

You have all certainly given me some new ideas. I will do some research on this and hopefully talk to my dr. about it. By the way, I tried to taper off about a year ago by taking 3/4 a pill instead of a whole one and I had the same bad reaction so I went back to the whole pill. Now I take a whole pill at night and 1/2 in the morning. Before I started the Florinef I had never experienced anything like this. I do have asthma and allergies. I cannot take albuterol because it makes my heart race, which is why I'm on the Pulmicort steroid inhaler.

If only I could turn back the clock and never have tried Florinef. It has wrecked havoc with me. I've wanted to post this for a long time. Most of the time I feel no one in the world understands me except for you all on this site. But in this problem I seem to be alone. I took Florinef for about 6 months when I decided to stop because my blood pressure had crept up into the 130's. It was always low so this concerned me. I talked to my pharmacist who told me I could just stop taking it. That night I woke up in the middle of the night with my heart racing and pounding so hard, harder and faster than I had ever experienced with POTS. I couldn't even walk to the bathroom. My husband carried me. I decided not to go to the ER because they never understand my condition. I went to my cardiologist the next morning. My blood pressure was 160 over something, I don't remember. I felt so bad, like I wanted to die. I couldn't breathe right, I was weak, and my heart wouldn't let up. He suggested I go back on the Florinef but taper down since my BP was up. For 2 weeks I was tortured with these horrible feelings. I couldn't even sleep for days with my heart racing nonstop. I called him back and he put me on Zoloft. If I thought I felt worse before, this made it even worse. I took it for 3 days then stopped. I won't go into details, but the night I started the Zoloft I ended up at the ER with my HR in the 160's . Now I cannot stop taking the Florinef. Here's the hard part. I have to take it on an empty stomach because I am so sensitive to it, if it is delayed getting into my system for even a few minutes I experience a repeat of the above feelings which usually last 24 hours. I have to take the Florinef at 8:30 a.m. and 8:30 p.m. every day. When the time change happens, the schedule switched to 9:30 am. and P.M. since I can't change when I take it. Right now I can't eat anything after 5:45 in the evening because it will interfere with the med and make me feel bad. This knocked me out of all the Christmas dinners and parties because of the time frame. No one cans seem to understand or remember my eating schedule. This may seem trivial but it is very inconvenient and frustrating. In the mornings I take 1/2 a pill so I obsess with cutting it perfectly in half so I don't feel bad. If I am 5-10 minutes late with the Florinef I begin to feel the effects. I am also on a steroid inhaler for my asthma. I missed a dose of it one morning and felt awful for missing it, I guess because it is a steroid too. I just wish I could stop taking this med to which I am so seriously addicted and sensitive to. Sorry for such a long vent. I just had to tell someone. I am so frustrated...

This always happens to me when I get a fever. As soon as my temp. creeps up past 99.5 degrees or so, my heart rate starts to go up. Then I take 2 extra strength Tylenol. I don't even attempt to deal with running a fever. Sometimes just having a virus (cold or stomach) will make my heart race too, even without a fever.

My dr. wanted me to try cipro for a UTI. I was afraid to take it because of the side effects listed (1.could cause cardiovascular collapse,2. tell your dr. if you have a nervous system disorder or heart problems). Well, he talked me into taking it. I took it one day and that night I thought I was dying! I had chest pressure and pain, trouble breathing, racing and pounding heart (worse than ever). I've had POTS for 15 years and I really thought I might die that night. Needless to say I didn't take any more but I felt very bad and POTsy for 3 or 4 days. I got my dr. to switch me to a different antibiotic, which I had to adjust to (I skipped a day between the Cipro and starting the new one). I am so tired of having these over the top horrible reactions to medicines. I always dread when I start a new one cause I never know how I will react. Some other meds I've had bad reactions to were Zoloft and Singulair. Now, I'm not sure the last antibiotic took care of the infection. I've taken Bactrim, Cipro, and Doxycycline. What else is left? They won't give me Pennicillan because I broke out in hives one time the day after I finished a 10 day course of them. Sorry to vent, I'm just so frustrated!

Here's something I've found recently that helps when my system is all hyped up. I do this at night if I feel too full of adrenaline. I lay on my back and use my arms or hand to press on the top of my head. I read somewhere that pressing on the top of your head will relax you. If I cross my arms over my head and apply pressure, my arms don't get so tired. If I can hold the pressure for 5-10 minutes, less sometimes, I can just feel my system settling down.

I am taking Mircette and have no trouble with it. It is low dose, my dr. says, and I have no breakthrough bleeding with it. I am hypersensitive to most meds but this one doesn't bother me- of course all of us seem to have different meds that bother us. Hope you find one that works for you. Jenny