Wednesday, June 25, 2008

The Whirlwind Of Doctor Appointments

Boy, I was so exhausted after last week's whirlwind of doctor appointments, and then an overscheduled weekend, that I'm falling behind here once again. Sorry about that.

I saw my internist last Friday to discuss all the specialists and what they thought. She had an interesting suggestion for me to help combat my fatigue: she offered me some stimulants, essentially. She said she would probably start with Provigil, which is used to treat people with narcolepsy, she said. Other options include medicines usually used to treat ADD, such as Adderall or Ritalin. I agreed to do some research (which I haven't gotten to yet) and get back to her on whether or not I'm interested.

It's tempting because I'd love to have more energy and not sleep 12-14 hours a day, sometimes more. But sleep is also a good escape from my joint pain, and if I'm awake more hours, that just means I'm probably going to end up taking more pain meds.

My mom suggested that I get some to try, and that I only take them on days when I need extra energy for special events, like when Ellie has a birthday party to attend as she did last Saturday night. It's a thought. But I'm also reluctant to start yet another habit-forming medication that might be hard to stop taking if/when I get better.

Meanwhile, I'm back to the immunologist today for the allergy testing to the pneumonia vaccine. I'm a bit perplexed on what they think will happen since my reaction back in March 2000 to the vaccine took longer to kick in than the three hours they told me I would be there for. But we'll see. I'd like to get the results of testing post-vaccine that will prove whether or not I have an immune deficiency as it appears I might. Many thanks to SharonMV who suggested this route of testing and for the detailed comment on my post about the original set of test results from the immunologist.

I'll try to update later today or tomorrow about how the allergy testing goes and whether or not I was able to get the vaccine.

Meanwhile, what I thought was a reaction to my having to stop taking allergy medicine for five days prior to today's tests appears to be a cold-type bug because my husband has the same symptoms, and he hasn't discontinued his allergy medicine. Just what I needed, eh?


SRR said...

I have had unexplained fatigue and have tried both Adderall (an amphetamine) and Provigil.

Adderall came first (insurance reasons). I really didn't like the way it made me feel when taken on a regular basis. However I keep some available and will take it on those days when I have a special event and really want to be able to function.

When I tried Provigil the first couple days were amazing. I was back to my usual self and actually able to enjoy life rather than just wanting to sleep. The effects became much less dramatic after that, and it was hard to tell how much it helped because some other health issues were going on at the time.

I discontinued taking the Provigil when I started having some odd symptoms and I was worried about side effects. It turns out that the odd symptoms were gall stones, and not associated with the Provigil. I may start it up again soon.

So, this is just anecdotal advice. However I have been able to take the adderall on an as needed basis (1-5 a month) without any withdrawel problems.

Best wishes figuring out what works best for you.


Aviva said...

Thanks, Marie! That's really encouraging about both medications. My mom, who has fatigue issues because of myasthenia gravis, says she finds these kinds of medicines work best when you don't take them on a daily basis. She says when you take them eveyr day, they lose some of their effectiveness because your body gets used to them.

I'm happy to hear from you that taking them sporadically works for you too, and I think that's the way I'd like to use them too.

Thanks so much for taking the time to share your experience!!

Laurie said...

Hi Aviva. I took Provigil for several months during a severe adrenal crisis a few years ago. It was helpful in keeping me alert and cutting down on the fog that such extreme exhaustion caused. I eventually stopped it because after awhile it made me a bit too on edge and I found that even when I wanted to try and take a nap or go to bed, I was too keyed up. But, that took a long time to get to that point, and it did help a lot. And I suppose I could have just taken a lower dose when I reached that point, but I wanted to come off it to see if my baseline adrenal problems had improved.

Long story short, it helped and the side effects really weren't an issue for most of the time I was on it. I agree you could give it a shot and then come off it if it doesn't work.

Sherril said...

I tried Provigil also, the last time I had a full time job. After awhile I had a similar reaction to Laurie's, it was even harder to sleep than usual. So I backed off the dosage and took more when I knew I had to do something that would make me sleepy that I needed not to be sleepy for, like going to court every other week. I was usually fascinated with what was going on in court, but I almost always started to nod off. Not an image I cared to project to the judge, my boss, etc.

After I was forced to resign from that job because of health issues, I continued to take Provigil as needed. I didn't have any problems with dependency on this med. But for me sleeping as much as I can works much better.

I don't know if I've mentioned this site to you before, but it's my favorite because they really tell it like it is. It's called Crazy Meds, buy you don't have to be taking the meds for crazy reasons to benefit from their honesty and depth of knowledge - The Good, The Bad, and The Funny About Provigil:

A brief quote: " is being prescribed off-label for just about everything. It is approaching Neurontin (gabapentin) in the snake oil sweepstakes. At least the people at Pfizer know how Neurontin works and what it does. Provigil is a true mystery. Other than binding to a few dopamine sites in the brain, but not releasing any more dopamine like amphetamines do, the good folks at Cephalon haven't published (for the 2002 edition of the PDR) just how the hell Provigil does its magic, because they didn't know! They do know that monkeys like it as much as cocaine."

There's also a message board, titled appropriately Crazy Talk. There are a lot of posts about Provigil there.

Aviva said...

Thanks for the feedback, Laurie & Sherril! I guess I have a little more reading to do about Provigil, but I'm leaning toward trying it on an occasional basis.

Can I just say that the idea that monkeys like Provigil more than cocaine sort of scares me ...

Thanks for mentioning that site, Sherril. I hadn't heard about it but it looks like an interesting place to check on the multitude of weird drugs my doctors propose.