Can someone help? New to this site

[ar1281a]

New to this site....desperately looking for answers. I found this site and have been reading some of people's cases. My story started a bit different but I'm experiencing some of the sam eproblems....

July 16th 2005, would be the day that has changed my life completely. I'm a 36 yo female, use to be healthy, and excercised quite a bit. That night I got an allergic reaction (anaphylaxis due to a spider bite) at the ER I was put on prednisone (high dosis - 60 mg) for week and a half, then taken off the prednisone I think too fast which caused a relapse, another trip to eh ER almost fainting, couldn't move and my HR was 140. I was put back on 50 mg of prednisones so in total I took it for a month. It seems like during that time I developed symptoms not consistent with what I was experiencing, extreme dizziness (even on the prednisone) hypotension and orhtostatic hypotension, increased HR. Increased frequency of urination, I was basically dehydrated as my body was not "absorving" the water. As it came in it went out. I was basically bed-ridden for a few weeks and could only go to the bathroom almost crawling.....My BP was 85 (high) sitting and dropped to 67 when standing with increased HR. I would get what I call "dizzy episodes" in which I would get extremelly dizzy, HR increased, increased urination, and cyclical diahrrea. Also numbness and tingling sensation. My GP told me I was experiencing a problem with my autonomic system but didn't know why. He said "you'll eventually get better". I needed answers as I had been out of work form quite a long time now (in total almost 2 months) I went to my endo (I have Graves disease but my thyroid has been under control), who decided to put me on a very low dosis of florinef to help and it did. After a few weeks I started to feel better although still experiencing some mild dizzy episodes that I could handle. I went back to work. Now, my endo took me off the florinef (slowly as it seems I'm very sensitive) and will test for ACHT. and in conversations with my new GP (you bet I switched Drs) decided to put me on proamitine to help while I was out the florinef. This med hasn't helped much. I feel very weird, a tingling, chill sensation all over my body and a weird feeling in my head (like fullness or s/t). Started over the weekend and two first days was ok, then by the third dau started to feel these weird sx coupled with dizziness...Now, I'm back at home. Also, I noticed yeaterdat that my HR instead of increasing during the episode actually dropped!!!! I was seated and it went from 80 to 64 within minutes. Stayed there though but I decided not to take the noon dosis. I was started with 2.5 mg morning/noon and to increase (today) 5 mg in the mroning and 2.5 mg at noon. I felt really bad again with all sx. My GP is sending me to a cardiologist for an event monitor and possibly a Tilt table test. I had an echo done that showed mild mitral leaflet thickening but not prolapse, Dr said not to worry about it. At this point, three months after everything started, I have no idea what to do or where to turn to. This has sucked my life out of me and don't know what to do next. My Drs are trying though....any one with similar sx? experience w/florinef and proamitine?

Thanks for listening and any feedback would be appreciated.

[taylortotmom]

Oh yeah, so goes the brutal force of dysautonomia. So sorry you have to be here but I think you will find a great source of support and knoweldge here. The tilt table will likely give you a diagnosis (but not always). Most of us are on florinef (it raising your blood pressure for one thing). You will learn that there are no "typical " stories here. Many people have POTS but not all do here. I don't for one but I get the pleasure of being tied to an iv pole every day so I get my own joys. I apologize for sounding sarcastic but I am sick as a dog right now with a horrible migraine but I do want to welcome you and hope we can be of some help for you. I know- it stinks- royally.

Carmen

[MomtoGiuliana]

So glad you found us, but so sorry for what you are going through. I am 37 and was diagnosed in 2003 with POTS, following childbirth. Many of us with POTS have experienced extreme and sudden symptoms very similar to yours (including decreases in hr) and then many months of finding diagnosis and treatment. Have you had a tilt table test? Are you seeing an electrophysiologist? I saw two cardiologists who told me nothing was wrong. It was an EP who finally properly diagnosed me.

It is hard--but I suspect you have a high probability of getting better over time, especially with proper treatment. Most of us do improve. I was bedridden and am now working part-time and active as a mom. I have difficult days or hours when I wonder if I will get awfully sick again, but I have very good days and weeks now too.

Please let us know how you do with the tests and doctors.

Take care, Katherine

[ar1281a]

Thanks for your replies and words of encouragement and support. I'm seeing a cardiologist tomorrow, but don't know if he's a electrophysiologist. Where can I find one? what meds do you take that have helped you feel better? Thanks again

[Ernie]

Hi,

Welcome to our little corner of the world.

A TTT is a good tool to diagnose dysautonomia.

You will find many friends here.

Welcome aboard.

[JenniferInOhio]

Hi and welcome. I'm relatively new, symptoms started abruptly in June 2005 after a diagnostic laparoscopy.

I'm sorry you are dealing with this. It is frustrating before and after diagnosis, unfortunately. There are not too many doctors who know a lot about POTS/dysautonomia. I'm not on florinef so I can't answer any questions about that, but there are several people here who do take it.

[mom4cem]

Welcome. You will find great information and great people here. Finding the right doctors and the right medications or things that help you feel better is the never ending quest.

Asking friends or relatives for a referral might be one way to go or might even help you stay away from certain drs.

I had trouble in the past with coming of of prednisone. Chills, panic etc. I know I have dysautonomia with lots of different symptoms too.

Let us know how you do.

[HoldOnToHope]

Hopefully the tilt table test will give you the answers you need. It certainly did for my daughter.

Your reaction to Midodrine - the tingling sensation in your scalp - is a common side effect and a sign the meds are working. Some people get used to the sensation and some can't stand it. We were told it is nothing to worry about. My daughter, with POTS, also gets the goodebumps from it. For her, the side effects are worth it....it makes her feel much better and she has a lot more stamina. She takes both FLorinef and Midodrine together.

Good luck to you. You've found a good place for info.

[ar1281a]

Thanks to all for your replies and words of support. Today, I went to see a cardiologist for the first time.....he seemed puzzled, said it was most probably an adrenal problem and to get checked for Lyme disease...with this, he sent me back to my endo and GP. He did agree to an event monitor as my GP had requested. I guess I didn't know what to expect, so I guess I'm a bit dissapointed...I guess I was looking for the magic answer for my problems.

In regards to proamitine, has anybody experienced the drop in HR like I did? I found on the internet that this may be a side-effect and it results in bradychardia to stop the med. Anyway, after my experience, my GP + Endo decided to take me off the proamitine and put me back on florinef....the test can wait they said, what's important is that I feel better and I am today. One thing my endo emphasized again is the need to eat a lot of salt while on florinef, w/o it doesn't work.

Thanks to all again!

[Aprilmarie52]

welcome! I have been on florinef for 5 years. It has worked so well for me that I am scared to go off of it. I have tried a few times but always end up feeling horrible. I hope you find this site helpful.

[tracy]

Welcome,

Sorry you have been feeling bad, hopefully with the tests and you back on the florinef, you'll be feeling better.

Just wanted to take a few minutes to welcome you.

[Dizzy Dame]

Hey there,

You asked what meds work. I've tried florinef, but all it did was give me awful headaches. Right now I drink about 3 liters of gatroade a day and eat 6-9 grams of sodium. This seems to work for me, and I can usually keep my bp over 100/60, however I still get tachy every time I stand up (usually 120-140 bpm if I stand for more than two minutes).

When my bp crashes (usually around the time of my cycle), I've learned that IV fluids are the ONLY thing that help. I go to the ER and get a liter or two and usually feel better right away, and stay feeling pretty good for about 24 hours.

Still, I would get tested for EVERYTHING before surrenduring to an "autonomic" diagnosis.

Hope that helps,

Lauren

[ar1281a]

Thanks to all for your replies! I have another question. I too take gatorade, but was wondering if there's anything else out there that will help balance elctrolytes but not contain so much sugar. Does anyone have experience with another drink? if so, how do you feel about it?

Lauren, thanks for the info. How do you take your sodium? tablets or just eating tons of salty food? I may try the IV fluids to see how I feel.

Thanks again!

[MightyMouse]

some folks use Ceralyte--although I've never tried it personally.

[wareagle]

Hi..just wanted to add that I drink Propel..it hardly has any sugar in it..as far as the sodium goes I've started drinking chicken broth..I use the dissovable granuals...they have around 800mg. per teaspoon.

Welcome to the board!

[Sunfish]

hello again:-)

i posted on your maryland/dc doc post but thought i'd chime in here re: the sports drinks. propel does have little sugar but also a far fewer electrolytes. some of us also drink a half & half mix of gatorade & water (gatorwater as steph calls it); my body does MUCH better with the more dilute concoction (& i prefer the taste). there is something called emergen-c that has lots of goodies into it too; you buy it in packets & mix it up with water. i like it but don't drink it as often as gatorade...probably out of habit. if you do a search you'll find more info on the forum as well re: drinks.

hope this helps!

melissa