jenwic

I used to not be bothered by sex when I first got POTS, but recently I am. After sex, I feel like I get a lot of adrenaline pumping through my system and I can't sleep well that night. I have a fast heart rate and rushes of adrenaline. Also, the next day I am still not back to normal. I am very frustrated. Does anyone else have this problem?

I've been on the Florinef since May of 2006. My dr. started me off with .1 mg twice a day. When I started to cut back I decided to cut the day time dose mostly because of my blood pressure running a little higher and people's blood pressure is usually higher during the day anyway. The dr. said a higher day time dose might help me more during the day but then after my blood pressure was up some he said I could take 1/2 a pill then. I do have a lot of insomnia. Maybe it's related to the bedtime dose.

Thank you Tanzanite! I'm so glad I'm not the only one and someone else understands.

I am just starting to feel achy and feverish. I know I've been exposed to the flu. Has anyone tried Tamiflu? How did you get along with it?

I think I posted a while back about missing my night time .1 mg dose of Florinef and how my heart raced for a week and a half afterwards. I had decided to cut back on my dosage since my blood pressure had crept up over the 6 months I had been on it. Next, I cut my night dose back from one whole pill to 3/4 a pill (yes, it's tricky to cut it that way ). I did fine. After waiting 2 weeks, I cut the night dose to 1/2 a pill. That night I woke up with my heart racing and it raced all night and all the next day until I went back to my normal 3/4 a pill dose the next night. Another time I cut the 3/4 a pill a little crooked and had a terrible time that night as well. How can anyone be so sensitive to this drug? Even my dr. doesn't believe me, but my body tells me otherwise. My blood pressure is still staying in the 130's a lot during the day and I would like to cut that night dose to 1/2 a pill. I read a post that one has to taper off the drug slowly to allow the adrenal glands time to adjust. I do fine as long as I don't tamper with my dosage, but if I vary it even a tiny bit I feel horrible. I just wish I'd never started this med.

I have been having these same symptoms a lot. Last night I decided to try taking 2 Tylenol at bedtime even though I had no fever. I fell asleep easily, woke up an hour later all sweaty, then fell back asleep and slept well the rest of the night. Any connection?

Since my blood pressure is still higher than I like, last night I decided to start cutting back on the Florinef. My dr. had said I could take as little as 1/2 a pill twice a day. I was terrified to cut back too quickly since my horrible experience so took 3/4 a pill last night instead of the whole pill I usually take. I figure I will do that for a week and then cut it back to 1/2 a pill. Is that cutting back too quickly?

I have been taking two .1 mg Florinef tablets per day since May. I noticed I was having mild headaches every day and decided to take my blood pressure. I took it for 3 days and noticed it was in the 130's to 140's (top number). I cut back on my salt but it didn't change. It was a Sunday and I suddenly got worried and decided to do something. I called my pharmacist and he said I could safely skip the bedtime pill and call my dr. in the morning. Thus began my week long nighmare I woke up that morning about 4:00 a.m. and my heart was flying! I was afraid to get out of bed to even pee and had my husband to carry me in. I seemed to loose a lot of fluids through peeing several times. I got my husband to take me to the ER, but when I got there we just sat in the parking lot cause I knew they wouldn't know what to do. I called the dr. on call from the office where my dr. works and she said missing one pill wouldn't have done that. I waited until morning and went to see my regular dr. (heart still flying). He said I must be really sensitive to have that kind of reaction to missing one pill. He put me back on it but said to watch my salt and try taking 1/2 a Florinef twice a day to two per day. I continued to take a whole pill for 3 more days. Heart still racing 24 hours a day so I cut back to 1/2 twice a day (still not taking much salt). Called dr. and told him I still feel awful. He put me on Zoloft. After taking one at bedtime I wake up in the wee hours feeling like someone stabbed me in the heart with a hot poker. Heart racing and pounding incredibly hard. Went to ER (heart rate 150) and they gave me IV fluids (this helped bring heart rate down to 115-125 ) after I explained my condition. I kept having this hot feeling shooting across my chest. EKG was done, blood tests (my potassium was a little low so they gave me some) . Dr at ER called my dr. who said it would take 2 weeks for the Zoloft so give me a nerve pill to help me through this period. I felt horrible on the Zoloft (nausea, diahrea, no appetite, started my period even though I was in the middle of the month on my birth control pill, muscles twitching, heart racing, adrenaline rushes, cannot sleep). I took it upon my self to quit taking the Zoloft and nerve pill. I started taking 1 1/2 Florinef pills per day ( 1/2 during the day and 1 whole at night) and added back salt. Within about 3 days I feel pretty much back to normal (for me) Have any of you had a experience with stopping Florinef?

Well, I didn't know that any of the SSRI's helped with vasoconstriction. That is a useful bit of info. My dr. said to watch my salt intake since my bp had been up (140's to 150's). This morning I started taking 1/2 a Florinef pill instead of a whole. Maybe now I can go back to taking in more salt. Thanks

Since last Sunday I have been having a very rough time. I've had the worst adrenaline surges ever! I am not sure what is going on. I get nauseous then I get this very hot feeling and my heart starts pounding out of my chest very fast. Usually the worst happens at night (I've hardly slept in days). I am used to waking up to my heart racing, but this is much worse. After the surge ends then I start chilling and shaking all over. These episodes last up to an hour. Then it all starts over again. I went to my doctor Monday and told him how awful I'd been feeling and that my blood pressure has been up (amazing for me). He said he was going to cut back on my dose of Florinef. I've been continuing to feel bad so I called back today and the nurse said he wants to start me on Zoloft. I am scared to try it. I have heard bad things like SSRI's can make you feel suicidal, make you nauseous, make your heart race (just what I need), and take a couple of weeks to start working.. I think I have been feeling bad due to a stomach virus or something, usually they make me feel bad for up to a week (but nothing like this before). But how do I know if it is a virus or if something else is going on. I'm so confused!!! I just had to vent, I've been so stressed out and No One seems to understand what I am going through (dr. said , "you should be used to the tachycardia caused by POTS by now, you just have to ride it out"). I wish I knew how I'd react to Zoloft without really trying it out. My poor body is wiped out after such a trying week. Thanks for listening to my vent! I am so glad I am not alone and have you all to talk to. At least someone understands.

I talked to my pharmacist and he said it would be ok to not take my bedtime dose until I can talk to the dr. in the morning. He said there would be enough "residual medicine" in my system to not hurt anything. I will call him in the morning. I figure he will take me off it or cut the dose in half.

Before I started taking Florinef my blood pressure averaged normal to a little below normal. I have been on it now since summer and have not been having any problems. About a week ago I started having headaches every day that last about all day. I have also been having the pins and needles tingly feeling on the top of my head that I associate with the time I tried Midodrine. I started checking my blood pressure (I hadn't been before) and noticed it stayed in the 140's all day (top number). I decided to cut back on salt intake but I've seen no change (145/93 a little while ago). Since I cannot contact the dr. today I think I will cut my florinef in half tonight and try to talk to him tomorrow. Has anyone else experienced this? Oh, also I've been having more added beats the last week.

This happens to me fairly often. I, too, have noticed it is tied to my menstrual cycle. Usually the worst time is the week after my period, which is odd. I am on a birth control pill so I don't know how that ties in. Sometimes when I wake up with my heart racing and pounding it is after a scary dream, sometimes not. It usually takes a while for my heart to settle back down to normal, as much as 30 minutes. Sometimes I don't sleep well the rest of the night. I have seen this topic posted on here several times and a lot of people with POTS seem to have this problem.

I drink decaf iced tea every day. I cannot tolerate any caffeine at all. I have tried drinking decaf coffee ( including Sanka) and they must have some caffeine too because they make me tachy and very jittery, just not to the degree that caffeinated does.

I was so glad to see this post. I thought I was just crazy (but I should know by now that if there is some weird symptom, just chalk it up to POTS). When I bend forward to get my hair combed out before the cut I feel really weird, disconnected like, and my ears start roaring.

I couldn't answer that with certainty, but only by what I experienced. I was SO stressed out when I went in for my tilt my heart was flying. When they tilted me up it went even faster and stayed up no matter how hard I tried to relax. It got up to 160 several times, but stayed in the 140's I think. When they put me down my heart rate immediately slowed. If it would have slowed during the test then I would have thought it could have been stress related, but it stayed up the whole time.

There are tons of websites out there that give info about glyconutrients, but here is one http://www.glyconutrientsreference.com/

I was talked into purchasing some by a friend who thinks they are great for all sorts of health problems. She said the glyconutrients help cell to cell communication. She didn't specifically say they would help my POTS, she only said how they had helped people with a variety of health problems. Has anyone had experience with them? I will receive my order in about a week.

I totally cannot tolerate any fever at all. A doctor once told me to not allow myself to have a fever so if I know it's going up, I immediately take Tylenol or Advil to keep it under control.

I have asthma and tried Singulair a few years ago. I had a couple of bad episodes with my heart racing after I took it so I was afraid to take it again. Recently I became concerned about using my steroid inhaler every day and decided to give Singulair a try again. My allergist gave me the 5mg chewable tablets to try (the same one my son takes who is 7). The first three nights I cut the pill in half. That went pretty well. Last night I took the whole 5mg and I woke up at 1:00 a.m. with my heart racing. I tried bearing down and that helped for a few minutes but then my heart rate would shoot right back up. Then came the chills and shaking. It was really bad for about an hour then it settled down a little. I got very little sleep the whole night. This is so discouraging! I get so sick and tired of not being able to take hardly any medicines because my body is SOOOOOO sensitive to meds. I just had to vent a little... Jenny

I live in Adams County, Ohio about 2 miles from the Ohio River. It is about 1 1/2 hours east of Cincinnati.

I have noticed that ever since I started taking Florinef, I have more PVC's (added beats). It is getting better since I have been taking it for a few months , but I always seems worse right around time for my period.

One weird symptom I had when taking Midodrine was a feeling of being on "speed" (even though I've never taken speed I could imagine that's what it would feel like) or a feeling of having ADHD. My dr. warned me that some people could have this feeling. I would try to read and my eyes skipped all over the page and I couldn't focus. If I was having a conversation, I couldn't pull my thoughts together. I go back to the dr. next week to tell him all this. I was only on the Midodrine one week and I quit. (Oh, I also had the tingly head feeling)

Thank you all SO much for the advice! I am going to try all your suggestions and hopefully I can control the horrible tachycardia by eating differently. Now my only problem will be self control.

My worst time to eat is also in the mornings. I cannot eat cereal at all or my heart races. I have found that a small serving of plain old oatmeal (no sugar added) with a little bit of honey doesn't bother me. I cannot drink alcohol at all because it really bothers me. Sophia, I had not heard about adding fat to slow digestion. I will have to try that. I do know that when I eat fast food it about kills me for 2-3 hours afterwards. The worst is hamburger and fries. Chicken isn't quite so bad. I have started just ordering a salad when I take the kids to McDonald's. Maybe the fat in the fast food meals doesn't help or maybe there's some other ingredient in there that makes it so bad.