another one of those days...

[persephone]

Ok, so I thought to myself today "don't take the fludrocortisone today, it will only make me shaky".

I'm still shaky anyway! I've had crying fits, really bad shakes with the bowing legs again....I'm not going to take anymore...this drug seems pretty potent if it's doing all this to me in such a short space of time.

and the complete inability to concentrate. Perhaps worst of all is that I decided to go along and do the sociable thing this evening and attend a big lecture in the faculty, and there was a drinks reception afterwards.

I had TWO SMALL glasses of white wine and that was ENOUGH to set me off. My lovely tutor asked if I was ok as I was leaving and I said "Oh, yes, I'm fine!" and some really nice students walked me back but as soon as I got back (and I'd really felt myself slowing down beforehand) I grayed out. The room was spinning, I had to lie down and I felt I was being sucked through the floor, the pull of gravity was SO huge.

It was awful- I couldn't even lift my head.

Could this still be from Fludrocortisone? I only started taking it on Friday, I mean jeez! That's no time at all!

I feel better now, as in I'm not fainting/pre-syncopal, but these terrible shakes are back, my essay isn't done and the pain in my head- my GOD it's excruciating.

Oh and the Disability office have said that if I don't get a bike helmet for my scooter, you know, the one that goes at 5mph, they will take it away from me!

I just want a big hug from my mum today. I feel like a frightened and vulnerable little girl here...this palce is just swamping me

[Dawg Tired]

I took it for 4 days. I gained 16 pounds... my pcp told me to "give it a month at least! If you don't feel better by then, we'll try something else." Apparently he figured if he could just kill me I would be one less problem for him to deal with.

I went off it on my own. It took me months to get rid of the shaking, weakness from just the 4 days of it. Plus it took my BP to 200/100 levels. I refused to try the proamitine after that.

I know I'm not your mum but here's a {{{{{hug}}}}} anyway, hope it helps!

[India]

Persephone,

I'm so sorry that you are feeling so bad and I'm sending out some Aloha all the way from Hawaii in the hopes that it will make you feel better. I've recently been put on florinef (fludrocortisone) and it has thus far worked well for me. I notice that your signature says that you are on midodrine as well. I had real problems with that, in fact, almost the same symptoms that you are describing experiencing on the florinef. I was completely shakey and could barely stand. I'm on the other side of the lecturn to you--I'm a professor--and while I was on the meds I had to grasp my table for dear life or sit down in order to get through a lecture! Could it be you are taking a combo of drugs that interact badly for you? Have you had problems with then midodrine before?

I too had headaches when I first started the florinef, but they wore off after a while. I know some people get persistent head pains, however, enough to force them to stop taking the drug. My doc told me that the half-life of florinef (how long it stays active in the body) could be anywhere from 24-72 hours, so your shaking I suppose could be residual effects from the florinef as it has not cleared your system yet.

I also find I cannot tolerate alcohol even in small amounts anymore (I grew up in England and went to an English Uni so I know how antithetical the idea of a "dry" three years is to a college experience!). But alcohol makes me extremely tachy, dizzy and messes with my BP. I believe that alcohol in combination with florinef can significantly elevate your BP: maybe that's making the shaking worse? (although it would seem to me that small amounts of alcohol would not have that much effect).

I think from reading this site you can tell that different meds affect all of us in different ways and many of us have just had to grope our way towards improvement or at least a tolerable existence through trial and error and in spite of a deplorable lack of knowledge about POTS amongst some members of the medical establishment. I know that doesn't seem very comforting and I well remember how stressful it was to be an undergrad in Britain and to cope with feeling crappy all the time. I wish I had a magic pill to give you.

Just know that we are all sympathetic and that you are not the first one to go through all of this.

Aloha,

India

[persephone]

THanks Gayla for the hug! and India-what's your subject and what uni did you go to? I did my undergrad in Scotland but now I'm at Oxford. And my essay STILL isn't done! I'mfinding it so hard to just write it out- I keep getting swamped by my ideas because I'm writing about really big and long poems

I hate knowing that I could do so much better than this. I thought I had what it takes...but I feel like I'm failing everyone and everything here.

[India]

Persephone,

My field is American history (goes down very well when a Brit enlightens Americans about the Revolution!) and I did my undergrad at the University of Durham and my Ph.D. in the U.S.

When I was working on my Ph.D., which is a longer process in the U.S. than in Britain, as we have to do all this pesky coursework as well as the dissertation, it was a constant battle for me to just keep going. I wanted to sleep all the time, or I was having tachy and fainting episodes and no one seemed to know what was going on (I wasn't diagnosed until a few years after I finished my degree). I was lucky in that I had the best advisor who constantly buoyed my spirits by remarking he didn't know how I was managing to do everything in my condition! Without him and the support of my now husband, I don't know how I would have got through. But then, I didn't know of a great supportive forum such as this one.

The problem with grad school, as one wise person once remarked, is that it is 5% intellect and 95% persistence. I think that anyone who suffers from POTS is, however, one of the most persistent and forebearing people on the planets, so I think this is going to help you finish up. My strategy was to just try and write a little every day, just to keep the illusion of forward progress alive: doesn't matter if it is a couple of sentences or a couple of pages. POTS is inertia causing enough as it is and I believe that we have to do everything possible to fight that. Every word you write is a small victory. And I think it actually helps me to exercise my little grey cells as much as possible: it's a distraction and I think anything that keeps your mind healthy can help your body do the same.

Aloha and cheers,

India

[Sunfish]

pers -

first, i'm sorry things are so frustrating/overwhelming at the moment. i definitely feel at least some of your frustrations in terms of trying to manage with school, horrible accomodations/assistance on campus, a body that won't cooperate, adjusting new meds, etc.

i honestly have no idea if florinef could be causing so many problems for you. but it seems to me that the things you're mentioning have happened previously? before the florinef? i could be wrong.

i do know though that florinef - if it is a culprit - will be in your system for more than the day you took it. obviously not to the same degree, but it's not as quick acting - onset, half-life, etc. it takes awhile generally to get a benefit though too, so if it's not the culprit, you'll have to wait it out longer to see if it's helping. b/c our symptoms are so variable anyway, it's sometimes SO hard to tell what's what.

hang in there,

melissa

[dizzygirl]

pers-- I am sorry that you are feeling so badly!! and struggling so much.. I dont really have anyhting new towhat is already being said..

Just that I agree!! You are stronger them you may realize at times.. and it shows in your posts.. and tha fact that depsite how you are feeling girl! you are still going to classes!!! that is just so awesome!! and you deserve so much credit and respect for that.. your too are an inspiration persephone!!

I read a wonderful book that I finished last night!! And in the bool the author kept saying HOLD ON HOLD on.. things will improve even if it is only in small ways, they will change.. so persephone

HOLD ON HOLD ON!!! feel better

Linda Sending you super big cyber bear hugs!!!!

[Ling]

I know what it feels like to be so desperate to have medication that you would do anything. I had the exact some problems on the medication. I lost a month of my life in bed due to it. If I can give you some good advice that I wish I had learnt earlier on. If the medication does not work, LEAVE IT! Our bodies are so sensitive. Our lives are so challenging and difficult as it is don?t make your life harder than what it need be. I don?t even know how many tremors I have had. You can break a bed when you start shaking the way our bodies do. What worked for me was adding a Beta Blocker to my life. My tremors almost disappeared. Watch your stress as I get more tremors when I am upset. The headaches for me are related to sugar. Have you had a glucose intolerance test? I eat 6 small meals a day with low fat and no sugar. Works great! I understand the pressure you are under at the moment with your studies. I have been studding for years and still wish to study for a few more years. Our health is just a challenging for assignments and exams. I have gone through horrible times with my studies. However I have always passed and managed to finish what I was doing. You can do, don?t worry. Allot of us cant take the medication you are on at the moment.

[Eillyre]

Sorry things just keep getting worse for you, Persephone! I'm sending you a hug!

I remember those dreadful headaches from Florinef! They were absolutely terrible!

Hope things look up soon. Happy writing!

Angela