Florinef explaining my hellish week in Oxford?

[persephone]

I'm just wondering because I had a horrific time after that tilt test 2 weeks ago- Idon't know if the tilt itself is to blame, although the effects shouldn't last for almost 2 weeks anyway.

I took it for 4 days before I stopped because it was making me so much worse.

You all know me pretty well- straight talking, like a laugh, sometimes a bit too much of a thinker and worrier BUT essentially outgoing and jolly, I think?

Well, last week, EVERY SINGLE DAY I rang my parents shaking and crying, telling them that I couldn't cope here.

I told my Cardiologist I thought I was going to die here

I burst into tears on my flatmates, my tutors and more.

I couldn't read properly

I couldn't structure my thoughts

I couldn't breathe

I felt like there were hot pins and needles shooting up and down my arms and legs.

My head was throbbing

My legs wouldn't work, just kept splaying and turning to jelly

I kept losing my balance

I kept shaking so much that I could hardly hold a pen

I was experiencing what I can only think must be some kind of panic attacks- I had images of walking into the classes and being laughed out of them- I got so obsessed with this that I tihnk it was verging on the paranoid.

My GP told me yesterday when I phoned him after a particularly bad episode here that Flourinef can do stuff to the mental equilibrium, so it's not all me by any means. But he does think that the stress that the college heere have put me under with access etc explains why my POTS is worse- because stress makes anything worse.

I certianly don't think my behaviour is justified by a bit of extra stress though- I'm sure those drugs did something to me.

I was aboslutely demented,and thought I had cracked.

I feel that I've come out of whatever sort of "episode" that was- but I want to know if any of you have experienced anything like this? My cardiologist in Scotland wouldn't give me flourinef because he said it could cause a psychosis- does anyone know how common that is?

I just want to try and rationalise what's happened to me this week because it really terrified me.

[ar1281a]

wow, it sounds scary.....I take florinef (generic version) and haven't experienced anything like that. It's a drug that should help you retain salt and due to this, it may cause loss of potassium and sometimes, magnessium. I wonder if you had these and maybe they caused the problems you experienced? anybody checked your potassium and magnessium level? Although I honestly don't know if they may cause the sx you described...I've felt good with florinef. Really hope you feel better soon.

[Laura]

Hey Perse,

Oh, I'm so sorry this went so badly for you! It is a rare side effect, meaning not too many people will experience this, but Florinef absolutely can cause mental imbalance and throw things off, although I stress that it is a less common side effect. Not too many people will experience this with florinef use, but it does happen, unfortunately. I remember someone posting here before about some problems sort of similar with florinef use.

Must have been very scary for you to experience this. I hope it all passes quickly for you and you get back to your old self! Take good care. Laura

[DancingLight]

pers...

i didn't say anything about my florinef experience in your first post that you were going to try it...b/c i soooo wanted it to work for you.

when you stopped the med did your mood change? did you feel more like yourself?

i know you've had a couple of times when you got very depressed...did it feel the same or different than those times?

i am in a bit of a pinch energy and time wise here...but wanted to say...if you can, do a search for dancinglight and florinef...

i became so depressed, anxious and had suicidal thoughts...it was a nightmare. i am one of the ones that had the 'rare' reaction to this med!

here's hoping you feel more even keeled soon...

and btw...that bart simpson thingie that person did? absolutely CRUEL. i am so sorry.

hugs, em

[persephone]

ARGH!

[d4g7]

Hi Pers,

I have taken Florinef in the past, along with giving me the tremors it also gave me a migraine type headache - and I was very irritable - everything seemed either overwhelming, or I felt like I had missed the punch line if you know you what I mean - Either felt like I was going to scream, or had a feeling that would be similar to everyone knowing a joke and you being the only person not getting it - a bit behind the 8 ball I guess you would call it.

I've stopped taking it, and of course my BP has dropped a **** of a lot - I'm now having full syncope episodes and a problem with fluid intake (i.e. can't get enough). And I also posted a topic on here about emotional outbursts, which may or may not have been a result of the traces of Florinef left - I don't know - just after reading your post, it may be related.

I prefer to have these symptoms then experience what the Florinef did to me - I guess some of us a just sensitive to the medications....

I can completely sympathise with what you have been going through.

I seemed to have developed lately a real sensitivity to medications - even Zoloft was intolarable - I couldn't sleep, and was grinding my teeth.

Mestinon really gave me bad stomach problems - as in not being able to control myself - which is no good.

I'm now just down to the bare essentials - Propranalol and Xanax (which I would prefer not to take). But they aren't working adequitely. Sodium Chloride tablets make me vomit uncontrollably. I'm also taking a bit more of a holistic approach, to try and keep myself calm, a bit of aromatherepy, daily meditation etc. I'm trying to find the right combination of medications and lifestyle that might help me to manage this illness - most of the time anyway.

I'll keep posting if - you never know, I might come up with the miracle cure...

[Evie]

I cant take much ... i am on 150mcg a day ... i went up to 200 but it make me so irritated ... it was like i was all speedy and i could not stop fidgetting and it made me not feel the best emotionally ... yet if i lower my dose i am ok.

Have you tried limiting your dose?

That does sound horrible ... Maybe its a combination of things .... maybe when you are on holidays you could try florinef again to see how it is without stress as a factor?

Everyones different ... I hope you manage to sort out why your body is reacting so badly.

[sally]

Hi,

I read your post about being ill while at College. I hope you don't mind me chiming in but I was caught by this message. Both my children are in college full time and dealing with health issues as well so I know just how hard it can be. Pat yourself on the back for what you are accomplishing while ill. As far as how other people are going to view you now since you've had this last illness due to medication is just that, a reaction to a medication and probably stressors from a new environment and college life which can pack a wallop to anyone let alone to someone who has health issues. So don't let it get you down, just don't forget to breathe and give yourself credit where credit is due.

How other people view you, you can't control anyway and you shouldn't worry about it. Most normal people will admire you for what you doing inspite of what you have to contend with on a daily basis. As far as the rest, people are going to think whatever they want anyhow so don't waste your energy on the negative. Just keep doing what you are doing and don't forget to give yourself breaks in life and pamper yourself. Please try not to look at it like it definds you, it doesn't, you have more courage and strength inspite of it. Try not to beat yourself up over what you don't have total control over. Its okay, and anyone there that views you in the terms you just decribed is not worth wasting time over to begin with.

I hope you are feeling better by now and kudos to you for doing what you are doing.

[d4g7]

I was on 200mg/day - along with 120mg of Mestinon and 320mg of Propranalol, along with a couple of mgs of Xanax as required.

All of these drugs can have horrible side effects on some people - and I guess I am succeptable (sp?) to a lot of them.

I have since reduced the Propranalol to 200-240mg/day, and although I have tachy most of the day (around 90 sitting, and about 140-150 standing) - the side effects of the Propranalol are a lot less.

I am not keen to try the florinef again, even at a lower dose - the first time scared the **** out of me.

And needless to say, I won't take the Mestinon - especially the embarrassing situation I had a work (were I literally crapped myself - with no warning!). And that happened more than once, at least only once at work - the other times were at home, where I could discretely go the bathroom, clean up and have a shower.

But now I have the issue of trying to find out what is up with my fluid intake (so much going in, hardly anything coming out), and how to increase my BP so I am not so faint feeling all the time.

God, I wish for the days when I didn't have this illness, and went to the gym every day, and had lots of hobbies - now all I do is work (and unfortnately my othostatic intolorence is getting noticed more and more), and sleep (I can't believe that I now sleep for over 12 hours of the day!).

The Neurologist and Cardioligist have suggested ablation and a pacemaker - I hear there are pros and cons about this - after all it is only treating a symptom and not the cause, but surely it would help regulate the tachy and BP? Any thoughts?

There was also mention of Adrenilin (sp?) to try and shock my heart into doing the right thing??? Anyone heard of this?