4 September 2010

why do they do this?

midodrine is back on the market, yip-bloodly-peeeee. i was worried for a minute, well longer than a minute. i was so concerned i had called up my consultant friday morning and asked for another prescription, explaining to him the withdrawal. i thought well at least this would take me up till after christmas. i was planning places i wanted to see, before i would end up in bed for how long, goodness knows.

i think i will still do the few excursions i planned, however i have breathing space, fingers crossed midodrine will be on the market for a long time.

i was thinking about my anxiety. theres a few reasons why it may have lessened recently. one; im on a concoction of tablets, within two weeks last year i was taking; fludrocortisone to withhold blood volume, beta blockers to lower heart rate (could help with anxiety) midodrine to up my blood pressure (accounts for dizzy feeling on standing) paroxetine to balance the automonic nervous system out ( also a anxiety drug) domperidone to ease the nausea (something i felt on and off for an incredibly long time) and calcium for ostenpenia.

now is it the combo of meds that are helping me, paroxetine is also known as seroxat, an anti depressant, i think its also an anti-anxiety drug, i take 10mg a day and it was supposed to help my pots. ive never taken an anti depressant before because i was always scared of the side effects. however last year i was in a physical mess that i took all the drugs i was told too. the beta blockers too are given to anxious people i think, im on 40mg now after the episode a few weeks back ive lowered it from 45mg per day.

or was the fact that i spent three dreadful weeks of unknowingness last year in hospital that i thought that nothing in life could touch me like that time did.

i still get nervous before going to appointments, the familiar sweating, hotness,but it doesnt tip over into i cant go, i have to go. has being this ill taught me something? has having rosie helped? she sits with me most of the time in house or out of house, i stroke her thats suppose to help with stress. i even talk to the mutt, make sure she has water when she want it, see that theres know other dogs about and protect her. taking away the thinking time i spent on me.

finding an explanation for lots of anxiety symptoms. my autonomic nervous systems has been disrupted for years with pots, the autonomic system is responsible for the fight or flight, so would definitely had an impact of me. standing in queues i would get jittery, well now i know why, my blood pressure would drop my heart rate rise, dizziness would ensue and the good old fight or flight would kick in.

and maybe the most damaging would be the continuous confirmation by gps, that i was an anxious person and all i needed was a bit of cbt to help. well it didnt help. fine i worked things out, i know that nothing bad would happen yet i still felt the same physical feelings and there was nothing that i could do to stop them. once you get labelled a nut case then nothing you can say or do will convince the docs otherwise. ive had to really fight my corner to get where i am today. face prejudice, feel like i just want to curl up in a little ball and hide away from the medical world. yet when the symptoms persisted, i couldnt breathe i knew that something had to be done. i had to face these docs, hold back the tears at times because i know that crying would mean that i was depressed. not that i was so frustrated and angry.

and now how different life is. i get taken seriously. i have a rare genetic condition. prof grahame helped a great deal in turning the tide for me. top man prof g. i dont know whats worse, being not believed or getting the pity glare, 'go out and enjoy myself' the neuro said this week. he knows how fatal eds 4 can be, he knows that im going to be tested for it, if the prof thinks wise in a few weeks.

we dont know when our time is up. i could be a ticking time bomb if i have type four. i need to do things either way. has this ultimately helped in my battle with anxiety? maybe.

thanks to all of those who fought to persuade the fda to save midodrine.


agoraphob said...

A sad, but inspirational post.

I hope you don't have eds 4. Glad that the medication you needed is available.

Also, I am glad people are taking you seriously now and you are getting treated. Sucks when people say it is all in your head and say CBT. I don't have a medical problem (at least not that I know of), but i am glad that the meds you are taking for POTS and EDS are helping with the anxiety I wish you didn't have this genetic disorder, but I am glad you are not letting it stand in your way.

You are very strong and inspirational.

The Foggy Knitter said...

((((hugs)))) I've been there too and I sympathise from the bottom of my heart, I wish doctors wouldn't automatically assume that if it's not something they understand easily, it's in our head... I've had CBT now, more because of depression than other issues and while it has helped, I'm still physically sick!

I'm so glad the drug is going to be continued, knowing how scary just running out of a prescription is.

Prof Grahame sounds like an awesome doctor, enjoy yourself! xxxxxxx

Achelois said...

I've just lost a comment. Am gutted. I can't seem to write it in the same words second time round.

I just want to say I wonder if the anxiety all these years was in fact down to the undiagnosed EDS.

Who would have thought after all these years because of 'that' neurologist I would be suffering all those pre-appointment anxieties again.

I think you are a lot stronger than you think and you inspire me too Em.

Em said...

hi shelley

thanks, lifes throws alot of crap at us and we have to steer our way around it all somehow. im sooo glad midodrine is back on the shelf. because the med would counteract with my others meds, altering them all would be a nightmare. xxx

hi foggy

i avoided going to meds for so long, i suppose i knew something else was happening to my body, but because at the time i could put my finger on it,i had so many symptoms. yeh for midodrine.

ive finished the leg of my knee high sock, with a few pull outs and frustrations im starting on the heel!!! will sure to post pictures. xxx

hi achelois

glad your friends ok. i wish i could believe i was strong. im just so glad that ive not had to witness this with another member of the family, i would of crumpled. i have no choice but to see this through. you have put up with your fair share of docs in your time too. xxx

diver said...

Hi Em. Glad to hear about the diminished anxiety. All these tests you have to take :( ... and not being taken seriously ... and being patronised ... and those "three dreadful weeks of unknowingness" last year. It's an anxiety rollercoaster beyond imagination. I agree with Shelly - you're such a strong and inspirational gal the way you ride it all (hugs).

I hope your EDS4 test is a negative. Fingers crossed from down here for ya :)

Nechtan said...

Hi Em,

I have noticed in the last year the change in how you are dealing with things. You are such a much stronger person. I'm glad you are coping much better with your anxiety.

I hope the test for eds 4 comes back favourable. Can't imagine what that is like to have that hanging over you. Really wish you all the best with that test.

All the best


Em said...

thanks nechtan appreciate it. im crossing my fingers and toes. xxxx