Wednesday, July 28, 2010

Beta Blocker crash and BURN!!!


Ouch!!
Well after my last post over viewing my symptoms at this stage I have entered a new zone!! NOT a good one. I decided to give beta blockers a go for my orthostaic intolerance problem. Great idea, helps some people, nearly killed me hahaha.
I took a tiny tiny dose 4 nights in a row and by the fifth day I thought I was going to die. I had a severe reaction and they worked in reverse. My blood pressure got much lower and heart rate much higher, terrible headache, nausea, stomach cramps. It also made my body crash in a general sense, all my other CFS symptoms ramped it up.
Obviously I did not take the little pill on the fifth night and I saw my Dr on the 6the 6th day. My Dad had to virtually carry my into the clinic. It was awful.
My Dr (who I think is fantastic) said it was a reaction blah blah blah and I needed to stay horizontal for a few days and start the lots of water and salt thing. This was now officially a full on POTS episode. He also suggested we keep clear of any medications that my body wasn't already familiar with (sounds like a good idea to me). My friend Michael came and spent the next few days with me, feeding me although I felt so rotten I could barely eat. My Dr also suggested I come back in a few days and we try a Saline drip. He said the problem is low blood volume. If you don't have enough blood your blood pressure will be low and your heart beats twice as fast to try and pump it round sufficiently. Made sense to me. So in theory, putting Saline into me would increase the volume of blood and should alleviate the symptoms temporarily. I went and did this a 2 days ago and it was like magic! I instantly felt better and it lasted for almost a full day and although the symptoms came back they are not so severe. I am going today to have another go. Apparently if you do this say twice a week your body starts to recognise that new volume as being normal and will correct the problem itself over time. I think it's worth a go.
Also my Dr has set me up with a POTS specialist to go see in a few days time which is fantastic. It usually take months to get appointments with these people. The POTS guy may or may not have anything to add but it's better I go see him. If he wants to experiment on me them I am going to insist he admit me to hospital to do it. I don't want to be home alone ever again and have a crash like I did last week. It was totally terrifying and has left me with all my symptoms worse than they were previously. I just hope that after a few weeks I come back to baseline and that I get the POTS under control. It's crap not being able to sit up to eat and worse to fall off the toilet because your dizzy!!!!

Oh, and again, thanks everyone who commented on my previous post, it's very much appreciated and fab to know that others have experienced the same issues etc.
Mark, I'd be really keen to talk to you about Stem Cell stuff. Please drop me an email so I can get in touch - longlee@gmx.com Cheers!

Monday, July 12, 2010

This is better, but that is worse ....


It’s kind of the middle of the year so I thought I would just review how I am going in a general way. Firstly I can say that in the last 6 months my symptoms have been constantly changing. The thing that was initially my biggest problem was malaise, I’d wake up with it and go to bed with it. Every muscle in my body was just sore and icky. Now the malaise is really only present the day after I have done something. It doesn’t take much to trigger it off, if I do some laundry, wash up dishes and walk to the mail box all on the same day then I will usually have malaise the next day. I have seen a gradual but steady decrease in brain fog. I used to seem to just have it at a moderate level all day whereas now I only get it when my senses are assaulted, such as if I have a visitor who bombards me with questions etc. My level of muscle weakness I don’t think has really altered, I am pretty weak most of the time. Dizzyness/Orthostatic Intolerance has become my biggest issue. Initially I had random dizziness but I didn’t think it was major but now every time I stand up I feel very dizzy until I sit back down. I also get dizzy if I sit upright for more than 10-15 minutes, so I need to lounge with my feet up as much as possible. This issue makes it really hard to leave the house because being in a car means I can’t really get my feet up and being in a wheel chair is the same. Flu like symptoms were also something major for me 6 months ago but I only seem to have this on occasional days now. My sleep has generally improved but I do still get the odd night of scary night terrors, night sweats etc. My sensitivity to noise, light and movement is much much worse now. I am even finding that watching TV can be a problem. Sometime if the image on the TV moves suddenly I get instant motion sickness, it’s really bizarre! My body temperature seems to be regulating itself a little better now. It is still low but it’s consistent, previously it went from being very low to very high each day … it was just all over the place. My mood is still generally good, I have down days just like everyone else but it doesn’t happen all that often.

The things that have become worse I am assuming are just following the path of the disease and the things that are better I believe are mostly due to the medications I am using. I saw my Dr today and he has given me a prescription to get some Atenolol which is a beta blocker and when used in low dose it is supposed to help with the Orthostatic Intolerance. So fingers crossed. If I can get that under control I will be much more functional I think.

So I guess all in all I am doing OK. The big picture says I have not become worse over the last 6 months, but not significantly better either, just different. Different is OK! I think I am happy to just see changes occurring.

I’d be interested to know if other peoples symptoms wax and wane like mine have??

Saturday, July 3, 2010

Progress?

I know I only posted yesterday but I just came accross this documentary from the 90's and I thought some of you may be interested. It's an hour long but worth watching. It's a real reminder of how little has changed over the years ...

DVD Video Recording from Barborka on Vimeo.

Friday, July 2, 2010

Cars, medications and XMRV


I have made a small decision this week, but it’s one that feels like a huge deal. I have taken steps to de-register my car and cancel the insurance on it. I haven’t been able to drive in 6 months and clearly I wont be able to do so anytime in the foreseeable future. It’s just common sense really. Why pay for car registration and insurance on a car that will never leave my garage, in fact why not sell the car?? The thing is, even though I have come to a place of acceptance with this illness I guess there are still little bits of me lurking in the shadows that are saying ‘you’re not really ill, you’ll be up and about again in no time’. I know rationally this is not true but I guess it’s tied into that emotion of hope. De-registering and un-insuring my car is going to save me $1200 a year but it’s also snatches away another symbol that represents my old life and the hope attached to that. I have to do it because the money thing is a BIG thing ….My bank balance is currently going backwards at a rate of about $200 a week, so I need to find ways to trim that down! I’m not ready to sell the car, but maybe that will happen in due course.

On a brighter note (big happy smile goes here). I have settled on some medications/supplements that I believe are helping with many of the day to day symptoms. I am taking Endep at night to help with sleep (I know this is working because I forgot to take it the other night I had a terrible night of cold sweats, nightmares and endless tossing and turning). I am taking Vitamin D capsules which help with muscle dysfunction and pain, PreDop which helps with heart dysfunction (POTS etc), I am also wearing compression stockings to help with this (and they look very fetching). I am taking L-Carnitine which help with brain fog and nerve function and Creon which is a digestive enzyme because my pancreas is in a state of constant inflammation and isn’t working properly. Oh, and I am still getting a Vitamin B injection every 2 weeks which helps with fatigue and malaise (this definatly helps me). As I said, this combination does seem to be helping with each of the day to day symptoms. I’m miles away from being symptom free and I still cannot stand or sit upright for more than 20 minutes without the POTS getting me but it’s real progress and I am happy with that!!!

OK, next on the list ….. XMVR. I don’t know why I allowed myself to get sucked in by all of this. This kind of thing never goes smoothly, obviously there will be no resolution anytime soon …. I’m sure this will eventually be proven to have some significance but until then I reckon we should just go about our business as usual …. and when something is proven and is legitimately published then we can evaluate it.

Lastly, if you haven’t already signed the Justice for CFS/ME sufferers
Petition then please have a look - http://www.gopetition.co.uk/petitions/justice-for-cfs-me-sufferers.html even if you are not in the UK it is still worth signing!!!