Just an update :-)

iVillage Member
Registered: 05-19-2004
Just an update :-)
3
Mon, 08-28-2006 - 10:02am

Hi everyone,


  I just thought I'd let you all know how I've been doing. As some of you may have seen my struggle with meds over the last year or so. 


  I've been taking 2 grains of armour. I was actually up to 3grains (180mg) but it honestly did not make me feel any better or any worse! So I figured whats the point of spending the $ on the script!? ha ha I do go see my endo in a few weeks so I will be curious to see where I am at. I did lose a few lbs without doing much so thats always good. My weight gain has finally ceased (knock on wood). For a while it was horrible.  I got up to 182lbs in the spring I believe and now I am down to 162ish. I fluctuates a little but stays around there.  I am really glad I found a doc to give me armour. I think for me, it really made a difference!


  My newest problem, is sleep problems. In May (I think) I had an episode (and several after) where I'd wake paralyzed, my eyes would be moving but thats it. It really freaked me out. Beyond that, I was so tired during the day. Thats what made me keep pushing my thyroid meds up up up!  But it never helped!  Being that tired and then having bad sleep I finally called the doc. He referred me to a neuro doc. They had me do a 24 EEG. Normal. I didn't at the time really mention me being tired during the day b/c I felt like it's just me now. My thyroid being out I am destined to be tired!  Anyway, he wanted to put me on antidepressants b/c at the time I was also have hallucinations. Its the kind you get when waking or falling asleep. Personally, I thought the house was haunted. I've had these since being a teen though.  He said it would help those go away. I declined. I didn't want to take them without having an answer first! He referred me to a sleep doc. First visit was great, if all docs could be like him! 1 hr long, he just asked away and I described things that have been happening. The hallucinations, he said I was experiencing sleep paralysis and he asked if I was tired? I said, well, yes, but I assumed it was my thyroid. I kept upping the dose and no results.  I said I am a vegetable. I want to sleep, etc. He then asked about cataplexy.  Explained what it was (muscle weakness typically happens with strong emotion) I drew a blank. Set me up with a sleep/nap study and went on my way. I went back for my results. Talked with him some more and had a few things happen since then. He dx'd me with Narcolepsy. Happy to finally get some help but sad. My meds will cost $80 a month (including thyroid). I am 28! lol  I started my stimulant which I need increased. I was in walmart kind of laughing to myself b/c I took a stimulant and still feel sleepy.  As someone said Elvis syndrome "uppers during the day, downers to sleep at night"!  I do feel the stimulant helps, but it burns off quickly. I guess though you can split doses, etc. So that should help!


Well, just an update. lol  I am doing better - one illness at a time! :-)


April


 

iVillage Member
Registered: 07-31-2006
Mon, 08-28-2006 - 11:55am
April, As I am very new to all of this, including message boards, I hope I can help you, maybe! I am not sure what you have been diagnosed with, but my niece had alot of sleep problems, and episodes of being more or less paralyzed upon waking. Is very tired all the time, and they said it was her calcium level, and removed a parathyroid gland.
Don't know if that has anything to do with what you are going through or not, but I thought I would mention it. PAM
iVillage Member
Registered: 05-19-2004
Mon, 08-28-2006 - 12:14pm

Thanks for the suggestion.

iVillage Member
Registered: 07-31-2006
Mon, 08-28-2006 - 12:27pm
My niece is only 17, and had episodes in school of "zoning out". They thought she was having an epileptic seizure. She had been diagnosed as bipolar for years, and has been medicated with everything under the sun, due to depression, tiredness, etc. Finally she had kidney stones, and they found the calcium level was extremely high, then the parathyroid problem.
Also I guess it affects your bones, she has the beginnings of osteoporosis due to all of this. And thanks again for answering me about my son, I posted the rest of the results I was given, (but don't understand!)
PAM