cbhowell

Any suggestions for abdomen compression?  I have a terrible time after eating and looking for some relief.  I've never tried any abdomen compression options, but have seen them mentioned.  Are they effective?

Thanks!

Ughhh...thank you for the info!  Do you know what the doctor who is leaving name is?

Does anyone know of any physicians who are familiar in treating POTS in or around the South Carolina area?

I have been taking Florinef for over six years, and recently decided to stop after consulting doctor. I've never liked some of the side effects I felt on it, but did benefit from the increase in BP. I slowly reduced my dosage down to a 1/4 of a .1 mg tablet. I've not taken any Florinef in 2 weeks, but I still feel like I'm on it. Should I still feel it's effects at this point?

nm

Has anyone ever experienced an increase in heart rate after starting florinef?

Just a question....Will the irregular heartbeats associated with POTS lead to any heart damage in the future or are they harmless?

Thanks!

I'm looking at getting a Potassium/Magnesium supplement to go with the florinef that I'm taking. What should I look for on the bottle? How many mg, etc.? Any advice is appreciated!

Sorry if this is a dumb question, but I am currently taking florinef and a beta blocker. With beta blockers used to slow the heart rate, and corticosteroids such as florinef having the ability to elevate the heart rate, can't these medications work against one another? Could this cause irregular heartbeats? Just curious.

Basically the long term effects I was referring to were decrease in potassium levels, bone thinning, and vision problems. Glad to hear that it may not be that bad, because it sure has helped restore near normalcy to my life.

I have tried many different medications and am now down to just 0.25mg of Florinef. My consultant has told me that if I have to be on any of the drugs for POTS/NCS long term then this is the best as it has the least negetive effects long term. I believe you should be sure to have regular eye test as sterroids can effect your vision as well as regular blood tests looking at things such as your potassium levels. If you continue to have regular checks on these things then you shouldn't have too many problems.

Good luck

Katie

ps. If you do manage to find any further info about the long term effects I would also be very interested to reed it!

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I've been on .1 mg once a day of Florinef for about 15 months now and its done wonders for me. I've read some things about long-term usage of Florinef causing problems for people down the road. I'm a little afraid that my doctor may try to take me off of Florinef at some point because of this. Anyone have any opinions/thoughts/info on this?

Just for curiosity's sake, I was wondering if the pooling of blood caused by POTS can lead to blood clots? Are people with POTS more suceptible to blood clots?

Is it possible for someone to have a partial/slight case of POTS their entire life and not know it? I know that most on this forum have full blown POTS, but could someone have a small case of it? Just curious....Thanks!

I ask this because a year or two ago, I was found to have elevated liver enzymes in normal blood tests. I was tested again and the results were the same. Well, now that I've been diagnosed with POTS, I was wondering if there was a connection. They did CT scans, extensive blood work, etc....but could not find anything wrong with my liver. Could this be POTS related? If so, could this have a long term damaging effect on my liver?

I've read all the sites about Pure Autonomic Failure and POTS, but it seems that the symptoms are all the same. Is there a difference in the two? If so, what are they?

Well, I was put on o.1mg once a day about a month ago. I haven't had any headaches associated with the florinef, and I'm able to do a lot more than I was before I started taking it (able to stand longer, walk around more, etc.) I've had a lot of success so far, and I'm hoping that continues. I haven't checked my bp since I started, so I guess I should do that. So far, so good!

I have heard some bad things about Florinef. I was wondering if anyone has had success with it. I read on this site that it raises intracranial pressure? Should I be concerned about that? Thanks in advance for the replies.

It seems that a lot of those on here have lots of back pain or joint pain. Why does POTS cause this?

Sorry for all the questions....Just a little new and curious...

Thanks

Casey

Thanks for the help. One more question....It says do not use compression hose without doctor's supervision. Is that b/c of the rising of blood pressure?

I have a few questions about compression hose...

1. What do they do to help POTS?

2. Do they help significantly?

3. How high do they have to be? waist? knees?

4. How often do you wear them? all the time? just when you are going out?

5. Where is the best place to get them?

Any answers would be great. I'm new to POTS and just looking for something to help me with school, church, going out to wal-mart, etc.

Well, b/c I am new to the board, let me quickly tell my story. First of all, I am a 23 year old male. On Dec. 26, 2003, I noticed my heart racing while I was relaxing at home. After trips to the ER, family doctor, cardiologist, endocrinologist, neurologist, infectious disease specialist, and hospitalization, I found this site. I noticed that the symptoms seemed to describe how I felt. So I looked at the physicians list and found one in Charleston, SC, 2 hours from home. I visited Dr. Bergmann on June 23, and was quickly diagnosed with POTS. He reassured me that I WOULD NOT DIE, which really helped me (That was my biggest fear). He gave me Florinef to go with the Toprol that I was already on. The Florinef and Toprol have done wonders for me and returned me close to normal.

After having a diagnosis, being assured that this will not kill me, and medications that have helped, I moved on with my life today. I am 26 credit hours short of getting my Business Management degree from the Univ. of S. Carolina. I started summer school today, and it has given me a sense of getting on with my life. With the Lord's help, I will graduate in May of 2005.

Thanks to all who post here. It helped me find a doctor to help me, and let me know I am not alone.

Thanks

Casey

I am diagnosed with POTS, but just wondering how one would know the difference with Pure Autonomic Failure?

I know some people say they've had POTS all of their life. Well how do you know if you've had it that long? I'm 23 now and the first sign of having POTS was after I had played golf, I came home and layed down and I could feel my heart racing. My doctor says stress and anxiety could have triggered my POTS onset. Is that possible?

My neurologist is Dr. Bergmann from MUSC in Charleston, South Carolina.

I was just diagnosed with POTS on June 23. It was kind of relieving to finally have a diagnosis. I've been looking for an answer since December 26. The doctor that diagnosed me said that POTS tends to start fading away after 12 months. Do ya'll find this to be true?

Also, why is it that I feel cold all over sometimes?

My doctor says that POTS will not kill me, and I know from what I've read that it's true, but I'm still struggling with believing that. Do ya'll have problems like this too?

Thanks for you help, and I'm sure I will be around now that I've been diagnosed. I'm just looking for some positive thoughts right now.

Just read something about that in a previous post. Is this common with POTS?