meds vs exhaustion

For everything and anything else not covered in the other RLS sections.
Post Reply
rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

meds vs exhaustion

Post by rthom »

I've had to go off my ropinerole making things worse, anyway i've an appointment with the dr in a few days and have to form a new game plan by then or will need to stay as i am for 1 month till next visit. I was doing reletively well on the hydromorph as far as the rls and sleep were concerned, but it kept needing to be increased every now and again. Problem being that it makes me physically lacking in any energy--(look like the walking dead), and more to the point recently, cross around stresses. which include those i love--no good times just alot of negativity and angery responses. This is not my normal character and am back to myself off--family's getting along great for a change, (they even come to see me instead of avoid me!! :D ). I'm changing up one thing (no aspertame) but not much else i don't already do from my readings here. (thanks for the info everyone) However I'd rather be dead than go back to being "that guy" with those i love my fault or not.
The only other thing I'd wondered about is the idea of exercising till exhaustion on 1 night a week or something to get some sleep--I used to as a teen run myself at night till i couldn't stand anymore, only then did i get any sleep. Anyone tried overexercising to get past it? It's not what i want to do but I can't think of anything else.
Any other ideas are welcomed.
thanks
P.S for those following my reads i did get 20 min sleep this am, feel much better today. :D

ViewsAskew
Moderator
Posts: 16581
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: meds vs exhaustion

Post by ViewsAskew »

I used methadone as my primary drug for over 3 years. Toward the end, I was lucky to accomplish anything at all. I slept 10-12 hours on the nights it worked well and could hardly awaken. I was in a fog for 4-6 hours after I'd awaken. I'd only have energy and mental function after I took the methadone again the next night (paradoxically, it energizes me). And, like you, I'd required a dose increase every 8-10 months while on it, but would usually wait for 12-14 before I'd ask, so I'd send several months without sleeping well and finally would ask for an increase when I wasn't sleeping at all. I'd gone from 10 mg to 20 mg and knew that I only had two more increases and then I was at the dose limit.

I explained to Dr B that I had to find an alternative; he hadn't been my doctor before this. I flew out there specifically so he could help me deal with it. We'd emailed about it before I came and he agreed to help; he was to work with my local doctor. Hydromorph was exceptionally awful for me - it also affected my mood in a negative way and for some odd reason, just like the other 3 opoids I tried during this period, significantly contributed to myofascial trigger points. Hydropmorph also never provided more than 4 hours relief...my local doctor was so freaked that I could take them like candy and still need to dance a jig to stop the sensations, that she fired me and refused to treat me. From November of 2009 to April or May of 2010 (I'm guessing), we tried multiple combinations of things, the multiple opioids, tramadol, anti-seizure drugs, etc.

When none of them worked and I'd not slept much for too long and the trigger points were something I couldn't stand anymore, we came upon the idea to use Mirapex one night and methadone the next. I suggested it simply because we only had one more opioid to try and I couldn't stand being out of options or having it also worsen the trigger points! Seem logical that it would work. I can't take any dopamine agonist regularly because I augment as quickly as one week. But as long as I had a break in between using it, I figured I'd not augment; Dr B assured me my logic was correct. And, I thought maybe I could deal with the side effects from the methadone better when it wasn't everyday - that maybe it wouldn't build up and make me so lethargic. I also hoped that I'd not need a dose increase. We had to increase it to 25 mg.

It worked. It's not perfect! But, I do sleep longer the nights I take it, but I am functional in 1-2 hours. It still energizes me and getting to bed after I take it is a constant challenge. I have about a 20 minute window after it's effective but before I'm too awake to fall asleep. If I miss it, I'm often up until 6-8 AM. I haven't had to increase the methadone and I just realized that it's been at least 18 months since we started this. Before the WED was under control maybe 75% of the time on average - some nights 100%, but many nights only 30-50%. Initially with this, I'd guess it was under control about 80%, but since I started being religious about iron intake and keeping my vitamin D at 5000 IUs a day (low vit D levels was causing depression), I'd say that the WED is at about 90% controlled at night. I always have some during the day, but I can easily copy with that by moving around a bit.

All in all, this is the most normal I've felt since the fall of 2003 when I first augmented and everything got crazy.

Sorry for the lengthy tome, but my point is just that there are probably still alternatives. And, if it doesn't look like it, make one up 8) . There is so much they don't yet know, so experimenting may be the only way we can find a reasonable quality of life.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Post Reply