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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 16 of 16. This is the beginning of the thread.
Posted by zatar on October 19, 2011, at 9:03:21
I have been diagnosed with Fibromyalgia and CFS. Doxepin 10mg was my mainstay for sleep for years but doesn't do much for my panic, anxiety and atypical depression. I can't tolerate any SSRIs due to mild serotonin syndrome; tried various SSRIs in low doses - all worsen insomnia, increase anxiety and cause agitation, increased muscle tension (which exacerbates FMS pain).
Amitriptyline 5mg caused too much fatigue. Nortriptyline didn't do much. Neurontin/Lyrica added to sleep med MAYBE gave a little better sleep and had a mild anti-anxiety effect, but seemed to poop out quickly. Wellbutrin increased anxiety. Provigil increased anxiety. Was on Desyrel years ago without many side effects, but did not get deep sleep and was still fatigued. BTW, I use a CPAP for sleep apnea and UARS and still feel tired all the time.
The best I felt was on clonazepam and propranolol after I was prescribed them for non-stop panic attacks induced by a trial of Topamax (for pain control). But then my pdoc at that time wouldn't refill the clonazepam after things quieted down for me.
The funny thing is that years ago, when I was first diagnosed, I could tolerate usual doses of amitriptyline and Remeron. Recent trials showed that I can't tolerate even 1/10th the dose. So I'm thinking it's not drug metabolism related, but the receptors have changed somehow.
So I recently went off 10mg Doxepin and tried mirtazapine after reading that those with SSRI intolerance might be able to handle it. WRONG. On 7.5 mg, I slept 15 hours straight, then kept falling asleep all day. Cut down to 1/4 and 1/8 tablet and was still super tired. I felt like a slug, not to mention that my appetite ran amuck.
Now I started back on 3 mg. doxepin (Silenor) for about a week or so but I'm still so TIRED!!! And panic attacks are increasing.
To add to the confusion, I started on 15mg Deplin about two months ago. I am homozygous for the MTHFR 677C polymorphism, so my pdoc and I thought we would give it a try.
I am just so sensitive to meds that it seems like I can't take anything, but I need deep sleep and something for anxiety, panic and atypical depression. It's sort of moderate, but it feeds into the pain cycle.
MY QUESTIONS ARE THESE:
- Could Deplin be revving up my system too much and causing increased anxiety and fatigue?
- Since I do not have elevated homocysteine levels and did not have difficulty getting pregnant, do I even need Deplin? (Maybe there are redundancies in the folic acid pathway and I make enough. I don't feel like the Deplin is doing anything positive).
- What other meds can I try for insomnia (no deep sleep)?
- What other meds can I try?
Thanks in advance for any insights.
-Zatar
(Just an anecdote: generic 10mg doxepin used to cost me $4 and some change per month. Silenor 6mg costs over $200 per month....don't get me started on this one. If I need 6mg, I'll ask for generic doxepin liquid).
Posted by gadchik on October 19, 2011, at 10:32:18
In reply to Can't tolerate meds,TIRED all the time, + Deplin, posted by zatar on October 19, 2011, at 9:03:21
Have you seen this info on the web?
Treating Chronic Fatigue Syndrome (ME/CFS) Klonopin (Clonzepam)
"For years I have said that Clonazepam is perhaps the most useful medication in chronic fatigue syndrome "
Dr. David Bell, August 2007
"Klonopin has been Dr. Cheneys most effective drug for CFIDS over the years"
Carol Sieverling
Klonopin (Clonzepam) is a benzodiazepine that calms down the brain by reducing the set point at which its neurons are activated by increasing the production of GABA, a chemical that reduces neuronal activity. Klonopin has primarily been used to treat panic and seizure disorders.
Klonopin May Work in ME/CFS Because overactive neurons in chronic fatigue syndrome (ME/CFS) patients brains may lead to information overload, oversensitivity to stimuli and exhaustion.
Imagine being surrounded by a bank of TV sets and trying to concentrate on all of them thats what may be happening in CFS. Dr. Cheney believes this constant flood of information may cause the state of sensory overload that requires patients to seek a place of quiet to rejuvenate themselves. Dr. Baraniuk believes the 'gates' that filter information into the brain are damaged. Several studies suggest, in fact, that the brains of ME/CFS patients have difficulty turning their attention off from innocuous stimuli such as background noise.
By reducing the set point at which the brain becomes active Klonopin and other drugs and therapies that reduce central nervous system 'arousal' may give the brain the chance to rest and rejuvenate itself. Dr. Bell states Klonopin is most effective in those patients who feel wired but tired.
Drugs For Sleep in ME/CFSSleep and CFS
Ambien
Amytriptyline
Klonopin
Trazodone
Xyrem
Dr. T's Sleep Prescription
Translate this page into any language
Powered by TranslateHealing A Damaged Brain? Dr. Cheney puts Klonopin in the neuroprotector category. In 2000 he stated that since overactive neurons eventually burn themselves out and die that ME/CFS patients will suffer neuron loss unless this problem is brought under control. Since he made this predication several studies have shown some brain volume (grey matter) loss does occur in both ME/CFS and fibromyalgia.
Dose - Klonopins effectiveness in ME/CFS is intriguing given that one of its side effects is fatigue. Too much Klonopin can, in fact, cause fatigue in ME/CFS but just the right amount will increase energy levels and calmness. Physicians seek to find the sweet spot between over and over activation of the brain by varying the dose.
Dr. Cheney most frequently prescribes a combination of Klonopin, Doxepin elixir and a magnesium supplement (Magnesium Glycinate Forte/with taurine or a magnesium (glycinate) complex.
Klonopin two or more 0.5 mg. tablets at night for sleep. One quarter to half a tablet in the morning and mid afternoon to improve energy and cognition. Increase the dose until you become drowsy and then cut back. Double the dose during severe relapses.
Doxepin elixir (10 mg/ml.). Acts synergistically with Klonpin to assist sleep. Start with two drops at night and gradually increasing until you experience grogginess (morning fog) in the morning.
Magnesium glycinate (200 mgs.) at bedtime.Side Effects
Addiction: Because Klonopin is a benzodiazepine it has the potential to be addictive. Dr. Cheney reports, however, that he has never seen a case of addiction in the many patients hes treated.
Withdrawl: Klonopin must be withdrawn slowly. Interestingly Dr. Cheney reports that patients who are recovered suffer no withdrawl symptoms only the still ill patients who must withdraw from the drug gradually.
Klonopin vs. Clonzepam
Clonzepam is the generic form of Klonopin. In Dr. Cheneys experience Clonzepam is not quite as effective as Klonopin. Dr. Bell, however, reports good success with Clonzepam
Posted by jono_in_adelaide on October 19, 2011, at 16:28:10
In reply to Can't tolerate meds,TIRED all the time, + Deplin, posted by zatar on October 19, 2011, at 9:03:21
Why not go back to generic 10mg doxepin, one at night,if that worked, or ambien 10mg at night if you feel you need a change.
For the depression, it might be worth trying desipramine, starting off at 25mg per day and slowly increasing to an effective doseage. This has a very mild side effect profile, and is an effective antidepressant.
Posted by Phillipa on October 19, 2011, at 16:44:05
In reply to Re: Can't tolerate meds,TIRED all the time, + Deplin, posted by jono_in_adelaide on October 19, 2011, at 16:28:10
Could your metabolism also have changed? Phillipa
Posted by jono_in_adelaide on October 19, 2011, at 18:55:57
In reply to Re: Can't tolerate meds,TIRED all the time, + Deplin, posted by Phillipa on October 19, 2011, at 16:44:05
You might have to try and "suck it up" a bit re side effecs, with antidepressants, you get side effects first, and benifits later..... and the side effects tend to fade with time, so you often feel worse for a couple of weeks before you feel better.
For sleep, I'd either go back to doxepin 10mg, or try generic ambien 10mg.
For the depression and tiredness (and FMS) desipramine, starting at 25mg per day and slowly increasing till you get releif (upto 150me per day if needed)
If you cant tolorate desipramine in an effective doseage, then Viibryd would be well worth
Posted by DavidR11 on October 19, 2011, at 21:57:01
In reply to Can't tolerate meds,TIRED all the time, + Deplin, posted by zatar on October 19, 2011, at 9:03:21
Zatar-
Im glad that you were exposed to Deplin. If they did not explain, Deplin is very safe (as a vitamin) and addresses depression in a unusual method. Deplin should not give you any alarming side effects but do allow it to work, at least 60 days. The possibility of inadequate folate may be hindering some of what you are experiencing. Stay on the Deplin 15mg and I do hope you feel better. Let me know should you have any additional queestions. Also, feel free to visit the Deplin website.
Posted by zatar on October 19, 2011, at 23:05:12
In reply to Re: Can't tolerate meds,TIRED all the time, + Deplin, posted by Phillipa on October 19, 2011, at 16:44:05
> Could your metabolism also have changed? Phillipa
Yes, my metabolism has probably changed, but I attribute this to HPA axis dysfunction which should be helped by antidepressants. Thus the catch-22: need antidepressants, but they worsen anxiety, fatigue and pain.
-Zatar
Posted by zatar on October 19, 2011, at 23:13:37
In reply to Re: Can't tolerate meds,TIRED all the time, + Deplin, posted by jono_in_adelaide on October 19, 2011, at 18:55:57
> You might have to try and "suck it up" a bit re side effecs, with antidepressants, you get side effects first, and benifits later..... and the side effects tend to fade with time, so you often feel worse for a couple of weeks before you feel better.
>
> For sleep, I'd either go back to doxepin 10mg, or try generic ambien 10mg.
>
> For the depression and tiredness (and FMS) desipramine, starting at 25mg per day and slowly increasing till you get releif (upto 150me per day if needed)
>
> If you cant tolorate desipramine in an effective doseage, then Viibryd would be well worthI've "sucked it up" quite a bit. Prozac was the worst 2 months of my life. I give all my med trials at least 2-3 months, but because of Prozac's long half life, I had serotonin syndrome for a LONG time. We're talking about 1/8-1/4 the usual dose. I actually wake up with jaw and neck muscle fasciculations when taking SSRIs.
Haven't tried desipramine. Nortriptyline didn't do much for me.
The sleep specialist (neurologist) that I saw last week said that 3-6 mg. of doxepin is supposed to be better than even 10 mg.
Ambien and such is supposed to mess with sleep architecture. My sleep studies show that I get ZERO deep sleep. My REM sleep is OK, so I wouldn't meet the criteria for narcolepsy, which is the ONLY indication for Xyrem. The FDA did not approve Xyrem for Fibromyalgia.
Even Klonopin is supposed to mess with sleep architecture. Sleep meds I've tried keep me asleep (i.e. I don't wake up), but the quality of my sleep sucks, hence the "idiopathic daytime somnolence" (medical speak for I fell asleep every two hours during the daytime during a study).
Haven't tried Ambien, but my sleep doctor said it probably wouldn't do much for me.
-Zatar
Posted by zatar on October 19, 2011, at 23:16:16
In reply to Re: Can't tolerate meds,TIRED all the time, + Deplin, posted by DavidR11 on October 19, 2011, at 21:57:01
> Zatar-
>> Im glad that you were exposed to Deplin. If they did not explain, Deplin is very safe (as a vitamin) and addresses depression in a unusual method. Deplin should not give you any alarming side effects but do allow it to work, at least 60 days. The possibility of inadequate folate may be hindering some of what you are experiencing. Stay on the Deplin 15mg and I do hope you feel better. Let me know should you have any additional queestions. Also, feel free to visit the Deplin website.>>That's why I'm continuing with Deplin for at least 2 months. Have about a week to go. But while I may be homozygous for the MTHFE 677C polymorphism, the fact that my homocysteine is normal makes me wonder if there is some sort of redundancy in the various folate pathways and Deplin may not have the effect that it has in other homozygous individuals.
-Zatar
Posted by jono_in_adelaide on October 19, 2011, at 23:20:28
In reply to Re: Can't tolerate meds,TIRED all the time, + Deplin, posted by zatar on October 19, 2011, at 23:16:16
The only sleep med that doesnt mess with sleep architecture is trimipramine (Surmontil)
Might be worth tryig this, its an antidepressant as well as being a good sleep med, it might also help your FM symptoms.
Posted by zatar on October 19, 2011, at 23:21:16
In reply to Re: Can't tolerate meds,TIRED all the time, + Deplin, posted by gadchik on October 19, 2011, at 10:32:18
> Have you seen this info on the web?
>
> Treating Chronic Fatigue Syndrome (ME/CFS) Klonopin (Clonzepam)
>
> "For years I have said that Clonazepam is perhaps the most useful medication in chronic fatigue syndrome "
>
> Dr. David Bell, August 2007
>
> "Klonopin has been Dr. Cheneys most effective drug for CFIDS over the years"
>
> Carol Sieverling
Actually I saw Dr. Charles Lapp who worked with Dr. Cheney. I do have a prescription for clonazepam and take it prn for panic attacks. But it doesn't do anything for deep, restful sleep. I feel more mellow on it, but going over 0.5mg is depressogenic.I also tried diazapam, but clonazepam seems a bit better. It also increases my fatigue, so I don't take it daily.
I actually may want to give Lyrica another try. That's another med that I have to keep the dose low. I get blurry vision and big time weight gain on it, too.
-Zatar
Posted by zatar on October 19, 2011, at 23:29:03
In reply to Re: Can't tolerate meds,TIRED all the time, + Deplin, posted by jono_in_adelaide on October 19, 2011, at 23:20:28
> The only sleep med that doesnt mess with sleep architecture is trimipramine (Surmontil)
>
> Might be worth tryig this, its an antidepressant as well as being a good sleep med, it might also help your FM symptoms.Now that's a good suggestion! Sometimes those old drugs work better for some folks that the newer, more receptor specific ones. As an aside, my daughter did terrible on Lexapro. It had more cognitive side effects than Prozac or Zoloft. So much for a "pure" SSRI.
There are actually some FMS patients who do well on MAOIs. I haven't tried that route yet, but at least my pdoc is not averse to talking about it. My only concern is that when I get flares, I can't even do decaf coffee or chocolate. So the NRI effect of an MAOI may exacerbate my muscle issues. I don't just have amplified pain, I also have myofascial issues with lots of muscle knots and referred pain from that. Can't mess with my muscles. My only relief is seeing a wonderful physical therapist who does manual therapy once a week. It prevents me from having major issues like severe back pain, headaches, etc.
Thank you for the suggestion. I'm going for a repeat sleep study and will bring up Surmontil. I've found that doctors in their 50's or older have used the old drugs and can compare them to the newer ones more and are not afraid to use them.
-Zatar
Posted by creepy on October 20, 2011, at 3:12:46
In reply to Can't tolerate meds,TIRED all the time, + Deplin, posted by zatar on October 19, 2011, at 9:03:21
You sound a lot like me.. the sleep issues, the pain and the fatigue. I also tried topamax and it was great on pain and my PTSD symptoms. But it made me pretty stupid and I couldnt get over 50mg due to rapid cycling. I found that even a tiny dose of 12.5mg helped a lot. But my doc didnt believe me and took me off it.
Im not sure where the fatigue and pain come from. Sometimes I have days where I feel like I got run over by a bus and I have to take several naps during the day.
The only thing thats helped has been exercise and stimulants. of course stims make anxiety worse. I just live with it.
wellbutrin does nothing for the pain, but desipramine was good. 25-50mg helped without much anxiety. Very good on pain. Helped a little with fatigue.
I had a mixed-state reaction to several SSRIs but zoloft has been good to me. Helps a little with fatigue.
If youve tried TCAs and trazodone for sleep, maybe try hydroxyzine, prazosin or seroquel at a low dose? Adding some melatonin an hour before bed can sometimes help.
Posted by zatar on October 22, 2011, at 0:38:41
In reply to Re: Can't tolerate meds,TIRED all the time, + Deplin, posted by creepy on October 20, 2011, at 3:12:46
> You sound a lot like me.. the sleep issues, the pain and the fatigue. I also tried topamax and it was great on pain and my PTSD symptoms. But it made me pretty stupid and I couldnt get over 50mg due to rapid cycling. I found that even a tiny dose of 12.5mg helped a lot. But my doc didnt believe me and took me off it.
> Im not sure where the fatigue and pain come from. Sometimes I have days where I feel like I got run over by a bus and I have to take several naps during the day.
> The only thing thats helped has been exercise and stimulants. of course stims make anxiety worse. I just live with it.
> wellbutrin does nothing for the pain, but desipramine was good. 25-50mg helped without much anxiety. Very good on pain. Helped a little with fatigue.
> I had a mixed-state reaction to several SSRIs but zoloft has been good to me. Helps a little with fatigue.
> If youve tried TCAs and trazodone for sleep, maybe try hydroxyzine, prazosin or seroquel at a low dose? Adding some melatonin an hour before bed can sometimes help.
>Creepy,
Was on trazodone for years, but same thing....still woke up tired. Can't take ANY SSRI and Zoloft is way too stimulating. Really don't want to mess with the atypical antipsychotics (e.g. Seroquel), though I did try an experiment once with Risperdal when I had a Fibromyalgia flare. Took very low dose for two weeks which seemed to nip my Fibro flare in the bud. Then went off it (as per some weird protocol). When I tried it a second time 6 months later, it didn't do anything. Something to do with normalizing receptors. Too much or too long won't work. Receptors can change, but it seems a mystery how to figure it out.
Melatonin....meh. A neurologist told me that something like 30% respond to melatonin.
Anyway, I just started back on 10mg doxepin and go for another sleep study in two weeks. Now I'm trying to figure out whether there is any benefit of trimipramine over doxepin. The receptor profile looks similar, but there are some differences. Hopefully my sleep doc will know something about this and can elucidate things for me. Or it may just come down to another med trial. So sick of those. Takes forever and always results in exclusion. Even tried ondansetron once....nothing (at least there were no side effects).
I tell you. Just walking for 30 minutes each day and rest throughout the day does as much as any med I've tried. I saw a CFS specialist once who emphasized conservation of energy (read that DON'T DO TOO MUCH and REST WHEN NEEDED) is the primary focus for CFS. We keep looking for magic bullets when common sense may go a long way.
But even when I behave, there's still pain and fatigue. I can take a nap and still wake up tired even after 9 hours of uninterrupted sleep at night (on sleep meds). They call that "idiopathic hypersomnia". I personally think it's elevated inflammatory cytokines. I'm also on low dose aspirin, but don't notice any reduction in inflammation. Have rosacea and chronic dry eyes which are due to inflammation. May start on cyclosporin eye drops soon to prevent any future eye problems.
You call Topamax Stupemax. I call it, hands down, the worst drug I ever tried. I started low (1mg) and increased slow (over 2 months) to 100mg, but had BAD side effects. I think I had metabolic acidosis from it. 24 hour a day panic attacks, akathisia, couldn't write, blurred vision, confusion, agitation, etc etc etc. I couldn't drive. I just weaned myself off of it and was on Klonopin for months just to get back to some semblance of normal (for me).
I believe there are different subtypes of Fibromyalgia. What works for one doesn't work for another. And some folks have undiagnosed disorders such as Sjogren's, Lupus, Lyme, hypothyroidism, etc. I've had a terrific workup but nothing shows up except elevated antibodies to various viruses, which is non-specific.
And meds and doses that I could tolerate years ago, I cannot tolerate now. Getting older sucks and is not for the wimpy.
May discontinue the Deplin soon as I don't think it's doing anything and is $$$.
Good luck to you in your search for something that works. Whoever figures out how to treat Fibromyalgia should get a Nobel prize.
-Zatar
Posted by Iden on October 23, 2011, at 12:15:41
In reply to Can't tolerate meds,TIRED all the time, + Deplin, posted by zatar on October 19, 2011, at 9:03:21
> I have been diagnosed with Fibromyalgia and CFS......
> I can't tolerate any SSRIs due to mild serotonin
> syndrome; tried various SSRIs in low doses - all worsen
> insomnia, increase anxiety and cause agitation, increased
> muscle tension (which exacerbates FMS pain).
>
> Amitriptyline 5mg caused too much fatigue.......> Was on Desyrel years ago without many side
> effects, but did not get deep sleep ......> I could tolerate usual doses of amitriptyline and
> Remeron. Recent trials showed that I can't tolerate
> even 1/10th the dose. So I'm thinking it's not drug
> metabolism related, but the receptors have changed
> somehow......
> - Could Deplin be revving up my system too much and
> causing increased anxiety and fatigue?From a subsequent post:
> I've "sucked it up" quite a bit. Prozac was the worst 2
> months of my life. I give all my med trials at least 2-3
> months, but because of Prozac's long half life, I had
> serotonin syndrome for a LONG time. We're talking
> about 1/8-1/4 the usual dose. I actually wake up with
> jaw and neck muscle fasciculations when taking SSRIs.
Based on my personal experience with a number
of psychiatric drugs and not tolerating them well,
drug metabolism did come to mind.Your comment about Remeron is curious though.
You mention Prozac. The usual starting dose of
20 mg / day caused me considerable side effects
so I quit. Experiencing considerable depression,
I would begin again, same result. It eventually
occurred to me to try a partial dose. Prozac can be
dissolved in a given amount of water and portioned
out using a graduated cylinder. It keeps fine in the
refrigerator. Over time, I learned that if I was
going to re-start Prozac, I needed to start at 2 mg/ day
and over weeks work up to my max of 5 to 6 mg /day.
This is just one drug as an example.I eventually had an idea and made a list of all the
psychiatric drugs I had a problem with and then
sought to see how they were metabolized and see
what they might have in common.It turns out that liver enzymes P450 2D6 and/or
P450 2C19 can be the culprits if enzyme activity
is low or very low. Such people are called "poor
metabolizers."To explore this, if you haven't, try Googling
P450 poor metabolizer
P450 2D6 poor metabolizer
P450 2C19 poor metabolizerRegarding Deplin, it made me feel sick and I quit.
I tried again, same.
I tried 1/4 of a tablet / day. Made me feel bad.
I tried 1/4 of a tablet every other day and it
made me feel bad. The pdoc I see strongly
encouraged me to keep trying. It is hard to
keep taking something that makes me feel worse.Iden
Posted by Zatar on October 27, 2011, at 22:42:40
In reply to Re: Can't tolerate meds,TIRED all the time, + Deplin, posted by Iden on October 23, 2011, at 12:15:41
> Based on my personal experience with a number
> of psychiatric drugs and not tolerating them well,
> drug metabolism did come to mind.
>
> Your comment about Remeron is curious though.
>
> You mention Prozac. The usual starting dose of
> 20 mg / day caused me considerable side effects
> so I quit. Experiencing considerable depression,
> I would begin again, same result. It eventually
> occurred to me to try a partial dose. Prozac can be
> dissolved in a given amount of water and portioned
> out using a graduated cylinder. It keeps fine in the
> refrigerator. Over time, I learned that if I was
> going to re-start Prozac, I needed to start at 2 mg/ day
> and over weeks work up to my max of 5 to 6 mg /day.
> This is just one drug as an example.
>
> I eventually had an idea and made a list of all the
> psychiatric drugs I had a problem with and then
> sought to see how they were metabolized and see
> what they might have in common.
>
> It turns out that liver enzymes P450 2D6 and/or
> P450 2C19 can be the culprits if enzyme activity
> is low or very low. Such people are called "poor
> metabolizers."
>
> To explore this, if you haven't, try Googling
>
> P450 poor metabolizer
> P450 2D6 poor metabolizer
> P450 2C19 poor metabolizer
>
> Regarding Deplin, it made me feel sick and I quit.
>
> I tried again, same.
>
> I tried 1/4 of a tablet / day. Made me feel bad.
>
> I tried 1/4 of a tablet every other day and it
> made me feel bad. The pdoc I see strongly
> encouraged me to keep trying. It is hard to
> keep taking something that makes me feel worse.
>
> Iden
>I started Prozac at tiny doses as I do with every drug I attempt. I was even opening up Cymbalta capsules and counting out pellets.
Of course I thought about being a slow metabolizer, but years ago, when I was first diagnosed, I was able to tolerate regular doses of Remeron and amitriptyline without the side effects. Rather than drug metabolism changing, it seems more likely that the receptors have changed or some other pathway has ramped up or down. Or there is some speculation that some serotonin receptors are not functioning properly and there might be an increased amount of serotonin available at other receptor sites.
Codeine and propranolol are also metabolized by 2D6 and I can tolerate usual doses of those.
I'm thinking that maybe I have more mitochondrial issues going on. May need to try the carnitine or BCAA route. And maybe taking care of energy issues will improve secondary depression.
Wish I knew what subtype of FMS and CFS I was...
-Zatar
This is the end of the thread.
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