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Dr. Bob is Robert Hsiung, MD,
[email protected]Shown: posts 1 to 16 of 16. This is the beginning of the thread.
Posted by Elizabeth on April 23, 1999, at 23:30:01
My depression seems to be under control at present with Parnate, but I'm still having sleep troubles. This is a big problem for me, because if I can't sleep, it's hard to think clearly, and I have a *lot* of school work I need to catch up on.
I think there are several things contributing to my sleep problems:
1. An inherited tendency to erratic sleep patterns - I learned only recently that my dad has just the same problem I do, namely middle and terminal insomnia resulting in an inability to keep to any regular schedule (basically I - and he - can't sleep more than 4 hours at a time or so). I've had episodes of REM sleep behavior disorder that weren't clearly related to medication, which suggests that there's something going on beyond just insomnia. My psychopharmacologist thinks a sleep study would be in order, but I wonder how useful that would be (especially with the effects of the MAOI confounding the results).
2. I have chronic pain in my back, neck, and shoulders that can make it very hard to get to sleep in the first place.
3. The antidepressant I take (Parnate) tends to exacerbate the middle and terminal insomnia. It's very activating, and it causes major changes in sleep architecture as well.
I'm wondering how I can go about dealing with this stuff. With the kind of work I want to do, I really need my attention, concentration, and alertness to be better than they have been.
BTW I've been to internists for the pain - they don't have a clue. :-P I've also done physical therapy which was ineffective and tried things like regular exercise (walking, swimming) and changing sleeping surfaces.
I've tried a couple of drugs; Fioricet is the one that's worked best. Other ones I've tried:
- acetaminophen (that's paracetamol for you Euro-types): no effect
- benzos (Valium, etc.): seem to work (though inconsistently - as does Ambien (interestingly enough)
- NSAIDs (ibuprofen, naproxen, topical salycilates, Cataflam): didn't help
- Neurontin: didn't help
- opioids: have nasty side effects (although I do have buprenorphine as a PRN); tramadol doesn't seem to work very well
- antidepressants: phenelzine may have helped (though I should note I was also taking Ambien consistently throughout the time I was on Nardil), and I think that Effexor XR might have had some effect; I haven't been able to tolerate tricyclics, and Parnate doesn't seem to do the trickCarbamazepine and primidone have also been suggested; does anyone have experience using either of these for pain, or have any other suggestions?
Any thoughts appreciated. (See also my latest posting under the fibromyalgia thread.) Thanks.
-elizabeth
Posted by anne on April 24, 1999, at 1:29:15
In reply to chronic pain, insomnia - advice?, posted by Elizabeth on April 23, 1999, at 23:30:01
Elizabeth,
I've been following your posts and it seems to me you are struggling more with your problems and solutions are elusive. Your mention of chronic neck and upper back pain AND essential tremor make me suggest you consider another "zebra." Try the dystonia website http://www.dystonia-foundation.org/ to learn about a most mis-diagnosed disorder (and yes I have it). It requires a neurological exam for diagnosis and most neurologist aren't even good at diagnosing it. Movement disorder specialists are often more knowlegable. About 1/3 of dystonia patients have tremor, mine is postural, not resting like Parkinson's and much worse with stress. A painful neck is the most common type of dystonia. Usually the head will turn or pull in some direction as well. It is a neurotransmitter problem in the brain which is not well understood and most cases are genetic. At any rate, neurologists specialize in pain and it might be enlightening to see one. Most people with dystonia are misdiagnosed for years and considered "psychogenic" which is really frustrating when you have peculiar symptoms which wax and wane. And a lot of us stuggle with depression; not surprising considering our brain chemicals are out of whack.
Warmest regards,
anne
Posted by Elizabeth on April 25, 1999, at 11:58:46
In reply to a long shot for you, posted by anne on April 24, 1999, at 1:29:15
Hi Anne, and thanks for your thoughtfulness and concern. :-)
The tremor is a fine postural tremor mainly in my arms and hands. I don't have myoclonus, fasciculations, abnormal posturing, or other involuntary movements other than the tremor. It's a postural tremor, worse when I'm sleep deprived, and usually doesn't interfere much in my daily activities. I pretty much only use the propranolol when I have lab (I tend to spill things otherwise).
How do you deal with your dystonia, and how do you find it affects various areas of your life?
-elizabeth
Posted by anne on April 25, 1999, at 21:48:58
In reply to Re: a long shot for you, posted by Elizabeth on April 25, 1999, at 11:58:46
>I've had problems with writing since childhood, but I made all the way through college. It was puzzling though. I'm 40 years old now and about 3 years ago the writing problem got so bad I couldn't believe they hadn't fired me at work. Not just illegible but very difficult to control my fingers. My bicep became big from writing because I was working so hard. I finally reached a point I was scared and saw a neurologist. He diagnosed me immediately; I was very fortunate.
He told me botox (from botulinum toxin like food poisoning)was the only thing that worked for writer's cramp. I had the injections for a year and it DID work and I kept my job. I'm in grad school by now as I figured out right away I didn't want this poison forever; I had to be re-injected every 3 months. So I thought I needed a "thinking" not a "writing" job and that would solve all my problems. I quit my job and became a research assistant which required no writing and stopped the botox. A month later the dystonia spread to my other hand/arm, neck, lower face and my legs. My neuro sent me to the Mayo clinic for a second opinion - coward. He just wanted somebody else to tell me.
I had a pretty rough 6 months after that. At first I didn't want to take any meds because I knew they would affect cognition- and that is the one thing not affected by dystonia. The standard drugs are Artane and Klonopin to start. It became more painful and by bedtime it was hard to straighten out my legs in bed and the flexor spasms in both arms turned my hands into claws. I caved in and started Klonopin. Very helpful but it pushed me over the edge depression-wise. I take Effexor XR 75mg now and while at first it really increased the neck pain after 2 months on it my neck has been fairly quiet. I like Effexor a lot although it took a long time to get used to it; many side effects.
How does it affect my life? Well, I used to do a lot of mountain climbing and hiking. I still can I guess but it really increases the symptoms so I've been avoiding it. My hiking buddy is a psychiatrist; just a friend, and I miss seeing her. My hands are the worst and everything makes them cramp with use. The first thing I notice in the morning before I'm fully awake is that my hands hurt. I'm still in school but it's been tough. Somehow I get by taking few notes. I use a laptop for tests.
I still look rather normal; unless my mouth is moving around or I'm limping. The physical disabilities are nothing compared to feeling "mentally" bad though. For me being depressed meant I couldn't think critically - the worst disability of all. I hope you find a medication you can live with soon and get on with living. I feel like I'm just at that point now.
Posted by Elizabeth on April 27, 1999, at 1:48:06
In reply to since you asked..., posted by anne on April 25, 1999, at 21:48:58
Hi Anne. Thank you for sharing your experiences - I'm glad you've found something that works for you.
I've finally made an appointment to see a doctor about this (due to insurance weirdness, I don't actually have an internist in the city I live in). I asked my psychiatrist about the alleged MAOI-barbiturate interaction and he said that there is just a possibility (unconfirmed) that the MAOI could potentiate the barb's effects (so you use a smaller dose). So that, or another sort of muscle relaxant, may be the ticket, since it's worked before (Valium, however, didn't help much; neither do Klonopin and Xanax).
Having consulted the web and a neuro textbook, I don't think that what I have is dystonia, though I will find out more tomorrow. Essential tremor is pretty common - my dad has it too.
I know what you mean about depression being even more debilitating. I wonder if the reason my pain seems to be bothering me more might be because I'm not depressed (Parnate seems to be working - yay).
Posted by Torrey on April 27, 1999, at 4:02:13
In reply to chronic pain, insomnia - advice?, posted by Elizabeth on April 23, 1999, at 23:30:01
Elizabeth, I also have chronic upper-back/neck pain and pretty bad insomnia. There are some "natural" things that have been helpful to me for getting to sleep.
The hormone Melatonin, which regulates the sleep cycle, is available as a cheap over-the-counter supplement. Try 3mg before bed and see if it helps. The amino acid L-Tryptophan works good, too, at 500-2000mg doses, and is available from compounding pharmacies by prescription.
There are some good herbs, also. Valerian root extract works well for many people. Its important to get an extract of the fresh (not dried) root, and I find that the liquid products are more effective. The directions on the label are usually meaningless - you will need to experiment to find an effective dose. Fortunately, Valerian is quite safe, and in some research it was shown to reduce the waking-up at night insomnia that you mentioned. Some other herbs to look into are Kava Kava, Passionflower, and Hops.
I have always spoken with my doctor when using these products along with medication, and so far there have been no problems.
Posted by Elizabeth on May 2, 1999, at 1:42:07
In reply to Re: chronic pain, insomnia - advice?, posted by Torrey on April 27, 1999, at 4:02:13
> Elizabeth, I also have chronic upper-back/neck pain and pretty bad insomnia. There are some "natural" things that have been helpful to me for getting to sleep.
Thanks for the ideas, but I've tried most of these. Melatonin, in particular, is a bad idea with the antidepressant I take (Parnate). Also, when I tried it (before I was taking Parnate), it exacerbated the insomnia. Tryptophan is risky (not absolutely contraindicated, but a poor choice) as well.
None of the herbs you mentioned did anything for me when I tried them. (I did experiment with doses.)
It's not safe to assume that something that doesn't interact with one antidepressant will not interact with others.
BTW, doctors I've talked to about melatonin, as well as some people who take it themselves, have said that 3mg is probably higher than is usually necessary.
If it weren't for the pain, Ambien and Parnate would be okay for me (taking all the Parnate before 3pm or so makes a big difference). I don't know of any effective "natural" drugs for pain other than morphine, codeine, etc. (which tend to have too many side effects).
Posted by Victoria on May 2, 1999, at 20:03:29
In reply to Re: chronic pain, insomnia - advice?, posted by Elizabeth on May 2, 1999, at 1:42:07
Have you ever tried acupuncture? I've been doing it, just to see if it would do anything for the fibromyalgia symptoms. It seems to be effective for the aches and pains I get, although the effect only lasts a day or so.
> > Elizabeth, I also have chronic upper-back/neck pain and pretty bad insomnia. There are some "natural" things that have been helpful to me for getting to sleep.
>
> Thanks for the ideas, but I've tried most of these. Melatonin, in particular, is a bad idea with the antidepressant I take (Parnate). Also, when I tried it (before I was taking Parnate), it exacerbated the insomnia. Tryptophan is risky (not absolutely contraindicated, but a poor choice) as well.
>
> None of the herbs you mentioned did anything for me when I tried them. (I did experiment with doses.)
>
> It's not safe to assume that something that doesn't interact with one antidepressant will not interact with others.
>
> BTW, doctors I've talked to about melatonin, as well as some people who take it themselves, have said that 3mg is probably higher than is usually necessary.
>
> If it weren't for the pain, Ambien and Parnate would be okay for me (taking all the Parnate before 3pm or so makes a big difference). I don't know of any effective "natural" drugs for pain other than morphine, codeine, etc. (which tend to have too many side effects).
Posted by Elizabeth on May 5, 1999, at 22:53:01
In reply to Re: chronic pain, insomnia - advice?, posted by Victoria on May 2, 1999, at 20:03:29
> Have you ever tried acupuncture? I've been doing it, just to see if it would do anything for the fibromyalgia symptoms. It seems to be effective for the aches and pains I get, although the effect only lasts a day or so.
Yeah, I did this; about 20 treatments, from a fellow who came highly recommended by a couple people I know (and consider fairly reliable, even!). It sort of maybe seemed to help for a short time afterwards (not a couple days), but it never had any benefit that was more distinctive or lasting than that.
Massage therapy worked somewhat better, but it didn't last either. (I'm informed that "massage therapist," not "masseuse," is the p.c. term.)
An update: I've been taking Relafen (yeah, another NSAID) twice a day religiously for the past week or so. It doesn't seem to be doing much. My psychiatrist thought a sleep study might be a good idea, but I remain unconvinced that those are good for much except for research purposes and the diagnosis of a couple of specific sleep disorders (e.g., sleep apnea syndrome).
Posted by Victoria on May 6, 1999, at 16:11:17
In reply to Re: chronic pain, insomnia - advice?, posted by Elizabeth on May 5, 1999, at 22:53:01
Yeah, massage is such a treat it doesn't matter if it works for very long! I'm having another relapse of the fibromyalgia--very disappointing, since I had been doing a lot better for a while. Will probably have to got on the med-go-round again and try something new.
> > Have you ever tried acupuncture? I've been doing it, just to see if it would do anything for the fibromyalgia symptoms. It seems to be effective for the aches and pains I get, although the effect only lasts a day or so.
>
> Yeah, I did this; about 20 treatments, from a fellow who came highly recommended by a couple people I know (and consider fairly reliable, even!). It sort of maybe seemed to help for a short time afterwards (not a couple days), but it never had any benefit that was more distinctive or lasting than that.
>
> Massage therapy worked somewhat better, but it didn't last either. (I'm informed that "massage therapist," not "masseuse," is the p.c. term.)
>
> An update: I've been taking Relafen (yeah, another NSAID) twice a day religiously for the past week or so. It doesn't seem to be doing much. My psychiatrist thought a sleep study might be a good idea, but I remain unconvinced that those are good for much except for research purposes and the diagnosis of a couple of specific sleep disorders (e.g., sleep apnea syndrome).
Posted by Torrey on May 7, 1999, at 2:29:18
In reply to Re: chronic pain, insomnia - advice?, posted by Elizabeth on May 2, 1999, at 1:42:07
Elizabeth, a few other things came to mind -
have you tried, or considered, GHB (gamma hydroxy butyrate)? GHB has been restricted in some areas, but there are legal substitutes which rapidly metabolize to GHB in the body. I have used one called SomatoPro with good results. Slept like a baby with one or two grams, and no hangover the next day. I know its been demonized in the press, but if you look at the chemistry, it seems pretty benign. Not sure if there would be a problem with your meds, though.
For pain, I've used an herb called Jamaican Dogwood, in the liquid extract. It was really nice - felt more like an opiate than an aspirin type drug. Like the pain is still there, but it doesn't matter anymore, ya know?Just another two cents...
Elizabeth wrote:
> Thanks for the ideas, but I've tried most of these. Melatonin, in particular, is a bad idea with the antidepressant I take (Parnate). Also, when I tried it (before I was taking Parnate), it exacerbated the insomnia. Tryptophan is risky (not absolutely contraindicated, but a poor choice) as well.
>
> None of the herbs you mentioned did anything for me when I tried them. (I did experiment with doses.)
>
> It's not safe to assume that something that doesn't interact with one antidepressant will not interact with others.
>
> BTW, doctors I've talked to about melatonin, as well as some people who take it themselves, have said that 3mg is probably higher than is usually necessary.
>
> If it weren't for the pain, Ambien and Parnate would be okay for me (taking all the Parnate before 3pm or so makes a big difference). I don't know of any effective "natural" drugs for pain other than morphine, codeine, etc. (which tend to have too many side effects).
Posted by Racer on May 8, 1999, at 0:17:31
In reply to Re: chronic pain, insomnia - advice?, posted by Torrey on April 27, 1999, at 4:02:13
This may not go over really well, but as a sufferer of chronic pain, I've found a few things that help me and have no medication related side effects.
1. This one came from a discussion group for the disabled: satin sheets. They encourage movement at night, so that you don't get strained from constantly lying in one position.
2. Making and keeping a distinct schedule. Go to bed at the same time every day, get up at the same time every day. Don't get into bed except at bedtime. (If I have a cold, I'll still get up and lie down on the sofa rather than in bed.) Don't get into bed to "play", no reading or talking on the telephone. Bed is to sleep. (I do read for a few minutes at bedtime, but it's timed.) This helps associate bed and rest for you, and it does help.
3. Even if you're not sleeping, stay in bed and rest, or daydream about something nice. Just "float" a bit. That way, your body has a chance to regroup.
4. Bathe at night, but shower in the morning. That seems obvious to me, but it took me years to figure it out in the first place.
5. Effexor has a weird effect on me: I have a hard time getting to sleep at night, but I'm sleepy during the day. My first three days on it, I didn't sleep at all. That was OK, though, because I was resting peacefully all night long, which I hadn't been able to do in weeks. I do think it's helped me sleep overall, though.
Good luck to you.
Posted by Elizabeth on May 9, 1999, at 0:09:52
In reply to Re: chronic pain, insomnia - advice?, posted by Elizabeth on May 5, 1999, at 22:53:01
Hi again, everyone. I continue taking the Relafen (500mg b.i.d.) along with Parnate (10mg t.i.d.), pindolol (2.5mg t.i.d.) lithium (300mg q.h.s.), and Ambien (10mg q.h.s.). I'm still having quite a bit of pain. I got my doctor to talk to my psychiatrist, who told him that I am not a "drug seeker" and also gave him some info about interactions with my psych meds. I don't know what he is going to do.
I have a question: how can you tell (by physical exam) whether back pain is due to inflammation or muscle spasm? What differences could you observe?
Posted by Betsy on May 9, 1999, at 22:58:19
In reply to chronic pain: another update; q for professionals, posted by Elizabeth on May 9, 1999, at 0:09:52
> I have a question: how can you tell (by physical exam) whether back pain is due to inflammation or muscle spasm? What differences could you observe?
It continues to amaze me. There's so much good information on this
site - but why does nobody suggest massage therapy as a good solution
to problems of both chronic pain and depression?I visit a massage therapist once every week or two for just an hour.
It does me more good than anything else I could do for myself. Chronic
pains are lessened or no longer there (I'm on a computer about 14 hours
a day, as a grad student, so there's a lot of pain in the hands and
shoulders especially!) and the massage also help release some good chemicals
trapped in my muscles to improve my mood.I suggest trying massage therapy - go see someone liscensed, preferably
with a long track-record or working out of a chiropractor's office.It can do wonders for all sorts of problems - physical, mental and emotional.
Betsy
Posted by Shelley on May 11, 1999, at 19:01:26
In reply to chronic pain: another update; q for professionals, posted by Elizabeth on May 9, 1999, at 0:09:52
Hi Elizabeth! I have been following your threads. I had to have an MRI of my neck and shoulders to determine that I was indeed having muscle spasms and needed to be treated for that. I'm no prefessional, unless being a professional at being an insomniac counts, or a pain specialist. :) But, I heard you say that Neurontin didn't work for you. I'm trying it in combo with a decent dose of muscle relaxer and find the pain more tolerable, less acute, but nonetheless still there.
Let us know if you find some solutions. Thanks -Shell
Posted by Paula on May 26, 1999, at 11:11:19
In reply to Re: chronic pain: another update; q for professionals, posted by Shelley on May 11, 1999, at 19:01:26
For neck and shoulders I go swimming twice a week,
and that really helps the pain in the upper back
(neck and shoulders). I use snorkling gear so
that I do not have to arch my back and raise my
head out of the water for air. I alternate 4 or
more strokes and swim up to 1/2 a mile.Paula
This is the end of the thread.
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