Posted by Ilene on March 5, 2003, at 17:14:17
In reply to What meds help you?, posted by JaneB on March 5, 2003, at 8:50:37
> Never been diagnosed with CFS but all others mentioned, including skin cancer. What meds have you tried. Could you share good and bad responses to various meds? I'm trying to analyze my own situation and find solutions.
> Thanks
> JaneB
>Sure, since you asked, but it's long and complicated, and my memory is sometimes fuzzy. My personal history continues to affect my responses to meds in at least three ways:
1) I would have done much better if my conditions had been diagnosed and treated sooner, esp. the depression. (The longer you are depressed the more likely you are to stay depressed.)
2) i've experienced more trauma than most people, so I've had more triggers. I have to leave these out, otherwise I would ramble on and on and on.
3) I'm not sure whether I ever had an accurate diagnosis, even though looking back I see I have been depressed or dysthymic nearly all my life. I'm not clearly unipolar or bipolar or anything else. I've gone thru several doctors.
Despite my constant depression, I was in my early 30s before I started on meds. The first AD I took was desipramine (nortramin, pertofrane) I stopped when I was trying to get pregnant. I was off it for at over a year, and I was very depressed. When I started again it had lost its effectiveness; I tried higher and higher doses (I don't remember what they were) until I couldn't stand the side effects any more: dry mouth, light-headedness (postural hypotension), diarrhea.
I started swimming regularly around this time. Worked up to a mile 2 or 3 times a week and then added weights. I never realized I wasn't supposed to be completely exhausted, overheated, and light-headed after swimming. These were symptoms of neurally mediated hypotension (the dysautonomia) but it took me about 11 years to figure it out. Exercise never helped the depression, either. Maybe it would if my autonomic nervous system didn't screw things up.
Then I tried fluoxetine (prozac), which was new at the time, and hadn't become the social phenomenon it is today. After a few years I had to up the dosage to 60 mg. I think that's the maximum dose. Then I tried sertraline (zoloft), might have tried paroxetine (paxil). Didn't work. Tried bupropion (wellbutrin), but it made me too anxious. Ended up with citalopram (celexa), don't remember dosage. I'm not sure if I was ever in remission, but it was a stressful time overall.
Moved to the east coast while I was taking prozac. The hot and humid summers that made me tired, short of breath, and headachy. Now I know heat makes my blood pressure plummet. It's another reason to hate living here.
Broke my pelvis (whoops) and took lots of percocet, which contains the narcotic oxycodone. I think that is in oxycontin. Made me fuzzy and sleepy. Can't say it improved my mood. Certainly wasn't any fun. I don't think other opiates would help me.
Had nasty dental surgery that might have been a consequence of dry mouth.
I don't know if I was fully in remission w/ Celexa, but I took it for a few years. Meanwhile my sleep got worse and worse, and my pdoc prescibed methylphenidate (ritalin) to keep me awake, and 10 mg. amitriptyline (elavil etc.) and 300 mg. gabapentin (neurontin) to help me sleep. I hated the ritalin; it felt like squirrels were running around in my brain, so I switched to dextroamphetamine (dexedrine, dextrostat) up to 40mg.(?) a day.
After a few months my pdoc decided I had a sleep disorder (I forgot this before). It has a few names; she called it "delayed sleep phase disorder". She recommended a light box, which helped the most, but I still took all the other stuff because I didn't want to upset what felt like a precarious balance.
It was always a hassle to get dexedrine: I needed new script (no refills) and the pharmacy didn't always keep it in stock. I really hated running around asking for a controlled substance. After a few months (maybe a year? longer?) I felt worse instead of better when I took it. I think it caused abrupt swings in my blood pressure.
(It's pathetic when "drugs of abuse" don't do anything for you.)
By about 1 1/2 years ago I had constant suicidal ideation.
I got a better pdoc. Added sustained-release wellbutrin. I didn't have side effects from the wellbutrin sr. I felt a little more energetic. Not much, but it was something. I switched to the regular wellbutrin because the maximum dose is 50mg. higher. No side effects this time. I'm still taking it.
Tried fish oil. Went to over 9 grams of EPA. Didn't do anything, was hard to swallow all those immense capsules, was costing money. Now I take one (contains 1100 mg. "molecularly distilled" [huh?] oils) or eat oily fish every day, if I can remember. I took vitamin e and selenium as antioxidants with the fish oil.
Tapered off celexa. Started titrating up extended-release venlafaxine (effexor xr). It's hard to remember *exactly* what side effects I had, but I eventually got to feeling so strange I decided to quit before I got to an effective dose. I felt twitchy, shaky, dizzy, headachy, wobbly, blurry. And *then* I had horrendous withdrawal, despite gradually titrating down.Somewhere in here I ditched the dexedrine and started modafinil (provigil). I feel both more awake and less weird at 200 mg. I didn't like 300mg.
I've been at 200 mg. lamictal (lamotrigine) for about 10 days-2 weeks. I've felt a little better for the past 2 or 3 days, but that happens every once in a while anyway.
The only side effect is it takes a long time to have an orgasm. I don't know if that's common. At least I still have them. I had the same problem with the ssri's and all the newer ADs except wellbutrin.
Now I take lamictal, wellbutrin, neurontin, provigil, elavil, and the occasional fish oil capsule. I get some dry mouth, but it's mild compared to what I got before. My sleep/wake problems are under control, but I'm still severely depressed.
I've also changed my diet. I eat more fat and less carb. Hardly any bread, pasta, or potatoes; no table sugar to speak of. I don't feel shaky and irritable when I'm hungry, I don't eat to the point of feeling bloated, and I've lost a little weight. It's a slight improvement in my symptoms but again, doesn't address the underlying illness.
Feet? Inherited them. Had surgery, got orthotics, still fatigued after a short time. It's almost impossible to find shoes. The really ugly orthopedic shoes I used to wear most of the time aren't being manufactured anymore.
Skin? Congenitally melanin challenged? I think I said both parents got skin cancer. I've gotten a sunburn in less than 20 minutes. I got one between 6 and 7 pm one time during the fall or spring. That was *before* I started taking meds that increase sun sensitivity.
About 15-20 years ago a pricey derm. told me to wear sunscreen every day. If I hadn't listened to him my skin would be much worse! All I have now are a few actinic keratoses that are taken off w/ liquid nitrogen.
I have most of the risk factors for malignant melanoma, but I try to keep my skin "paranoia" within bounds. I wear regular high-spf sunscreen unless it's raining or snowing. I try to remember to keep it on my hands. I have some sunscreen with titanium dioxide that's supposed to block *all* UV but it is expensive and looks really strange. White and greasy. I reserve it for sunny days when I'm going to be outside for more than an hour or so. I keep myself covered (long sleeves, long pants or skirt, hat) when I'm out that long.
BTW, I took accutane and didn't become intensely depressed and suicidal.
I think I've forgotten something. Remind me if you recall what it is.
--I.
poster:Ilene
thread:203725
URL: http://www.dr-bob.org/babble/20030301/msgs/206224.html