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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 19 of 19. This is the beginning of the thread.
Posted by EastC on August 13, 2010, at 15:04:32
After many years of suffering from treatment resistant chronic insomnia I went to my health care provider to file for short term disability (about 1 month) in order to go see sleep specialists at the world renowned Johns Hopkins Medical Center.
I have been on so many medications and gone through so many tests. I know that my insomnia is due to a neurological condition and not a physiological one (such as sleep apnea, RLS, etc). I have had an MRI, EEG, and had two sleep studies done all of which were inconclusive. I have been on all of the benzos and am currently on Lexapro and Strattera in the morning and a combination of Xanax, Seroquel and Neurontin at bedtime (and removing the strattera from my regimen has not helped my sleep and only makes my depression worse). Also, Xanax is the benzo that has the lowest negative impact on my depression - all of the other ones make it significantly worse. Unfortunately, even on these medications I cannot get a full 7 to 8 hours of sleep during a normal block of time between 10:00 pm and 7:30 am because it takes me too long to fall asleep initially and I wake up throughout the night with trouble falling back asleep. It used to be that the combination of Neurontin and Seroquel at bedtime solved my sleep issue and gave me a consistent 8 hours of sleep every night of the week - after a period of years that benefit was lost. In the past I have been on the non-benzos Trazodone, Remeron, Serzone and the hypnotics Lunesta and Ambien (all of which worsened my depression). The only things that I haven't tried are the barbiturates, tricyclics and Xyrem (I have heard that Xyrem is the most effective for treatment resistant insomnia but I don't know if any doctor would be willing to prescribe it).
My only option now is to sleep in late - essentially waking up and going back to sleep repeatedly until I have hit my 7 to 8 hours of sleep sometime around noon (at which point I feel great for the rest of the day since this combination of meds completely fixes the depression side). I am hoping that others who have had a similar experience can share with me what medication or combination of medications solved their insomnia problem. My gut tells me that no medication(s) will allow me to get that 7 to 8 hours of sleep within that 10 pm to 7:30 am block of time any longer and that the ultimate solution will be to resign from my job and either become self-employed or find a line of work that starts in the afternoon.
I have a theory that from the time that the insomnia originally starts (in my case from childhood) it can in some cases progressively worsen due to an area of the brain that is responsible for producing and regulating GABA. I remember as a child having problems with falling asleep and waking up too early, but once I hit age 21 the insomnia became severe enough to require medication. This area most likely has a store of neurons that permanently decrease with age, causing a worsening of insomnia and eventually causing certain insomnia medications to loose their efficacy. Either that, or the medications themselves cause a semi-permanent down regulation of said neurons.
Posted by Phillipa on August 13, 2010, at 17:11:32
In reply to Treatment Resistant Chronic Insomnia - Disability, posted by EastC on August 13, 2010, at 15:04:32
West went through a period of severe insomnia myself and chloral hydrate with valium allowed me to sleep. Wierd now no insomnia tend to sleep find. Phillipa
Posted by bleauberry on August 13, 2010, at 18:13:27
In reply to Treatment Resistant Chronic Insomnia - Disability, posted by EastC on August 13, 2010, at 15:04:32
I think it makes sense to try out various physciological/neurological substances that may be deficient or impaired. Thinking of things like magnesium, glycine, gaba, tryptophan. I found a combo of Mg, glycine, and gaba to be particularly potent for supporting natural sleep (instead of knocking you out, they give the body the materials and instructions to carry out the software program called sleep).
In the herbal category, lemon balm prevents the breakdown of existing gaba and has tested positive for insomnia combined with passionflower and/or valerian. I'll have to hunt through my Dr Zhang Lyme book to find it again, but there is one herb in particular that is powerful for sleep without hangover. These herbs in my experience do help. Skullcap with valerian was especially potent.
I guess what I'm saying is, various plants can be more potent than medicines because they have synergistic mechanisms built into them that are uniquely different than any manmade drug. And if there is some element or mineral that is disrupted in your biochemistry, nothing is going to work very well until that missing link is supported. That's why I mentioned magnesium. Another would be high dose niacinamide (not niacin).
Take some of these natural substances along with your prescriptions and see what a difference it makes.
Sometimes the opioid system is somehow involved, since practically everything in the body...immune, hormones, pituitary...are linked to our endorphins. A trial of LDN (low dose naltrexone 1.5mg-3mg) would be a decent diagnostic and therapeutic trial. And think about it, what is the one area that is almost always missed when treating treatment resistant depression or anxiety or insomnia....the endogenous opioids. Too much focus on the common names serotonin, norepinephrine, dopamine, and gaba.
You may also want to do a 4-sample cortisol test within a 24 hour period to see what is going on there. Normally it follows an up and down curve throughout 24 hours. If yours doesn't follow that curve, then you just found a problem. If it is lower or higher than a normal curve at any point, then you found a problem. Not hard to correct them either.
I suppose you have already tried 1mg-3mg of remeron?
2.5mg-5mg zyprexa?
25mg-100mg seroquel?
10mg-25mg amitriptyline?Just trying to give you some ideas and hope, trying to stick to ones that I know have true potential.
Ahh, just remembered. The Zhang herb is called HerbSom. Can be taken alone or with meds.
Posted by linkadge on August 13, 2010, at 19:44:29
In reply to Treatment Resistant Chronic Insomnia - Disability, posted by EastC on August 13, 2010, at 15:04:32
The TCAs are a very viable option. You could try nortriptyline instead of straterra. Nortriptyline is a potent NRI like straterra (and a better AD imho) bit is has some marked sleep improving effects.
Linkadge
Posted by jane d on August 13, 2010, at 23:33:13
In reply to Treatment Resistant Chronic Insomnia - Disability, posted by EastC on August 13, 2010, at 15:04:32
How do you sleep on weekends or other days when you can sleep at the times you prefer? Do you also wake up continually if you go to bed at 2am or 4? If you can sleep well later you might be able to adjust your sleep cycle with light therapy and by adjusting the time of day you eat and the time of day that you take your medications.
What happens when you force yourself to go to work with little sleep? Can you sleep when you get home? I found that, no matter how tired I was if I stayed up past 11 or so I'd start to wake up again and be unable to sleep for hours. Perhaps 10pm is too late for you instead of too early.
Good luck.
Posted by Zyprexa on August 14, 2010, at 2:37:08
In reply to Treatment Resistant Chronic Insomnia - Disability, posted by EastC on August 13, 2010, at 15:04:32
Have you tried a larger dose of seroquel? Or how about zyprexa? Zyprexa has a longish half life, so you would sleep longer. Just take it a few hours before bed. I probably would not sleep with out the zyprexa, I also would not eat. The more zyprexa I take the longer to sleep. I've been taking it for 12 years now and it still works as good as when I started it.
Posted by EastC on August 14, 2010, at 12:41:34
In reply to Re: Treatment Resistant Chronic Insomnia - Disability » EastC, posted by Zyprexa on August 14, 2010, at 2:37:08
I am currently on 450 mg of Seroquel at bedtime. My understanding is that even though Zyprexa has a longer half life than Seroquel, it is not nearly as sedating. I tried Risperdal (which has a longer half life) for example, and it didn't even touch my insomnia. I have tried all of the natural remedies such as melatonin, 5-htp, kava kava, chamomile, l-theanine, etc to no avail. I would be open to the nortriptyline idea but TCAs overall scare me from a side effects perspective.
Posted by ed_uk2010 on August 14, 2010, at 13:21:54
In reply to Re: Treatment Resistant Chronic Insomnia - Disability, posted by EastC on August 14, 2010, at 12:41:34
>My gut tells me that no medication(s) will allow me to get that 7 to 8 hours of sleep within that 10 pm to 7:30 am block....
Do you definitely need 7 to 8 hours? Just asking because requirements for sleep are quite variable. Margaret Thatcher used to say that she only needed five hours in bed when she was our Prime Minister.
>I am currently on 450 mg of Seroquel at bedtime. My understanding is that even though Zyprexa has a longer half life than Seroquel, it is not nearly as sedating.
It's different. Some people do find Zyprexa to be superior for sleep, others prefer Seroquel. There's only one way to find out which works best for you!
>I would be open to the nortriptyline idea but TCAs overall scare me from a side effects perspective.
Personally, I would rather take a tricyclic than an antipsychotic. Nortriptyline is a decent antidepressant but it's not one of the most sedating tricyclics. Amitriptyline, doxepin and trimipramine are usually quite sedating - they are sometimes used for chronic insomnia.
Posted by Dr. Bob on August 14, 2010, at 20:34:32
In reply to Treatment Resistant Chronic Insomnia - Disability, posted by EastC on August 13, 2010, at 15:04:32
> After many years of suffering from treatment resistant chronic insomnia I went to my health care provider to file for short term disability (about 1 month) in order to go see sleep specialists at the world renowned Johns Hopkins Medical Center.
Please remember not to change your posting name without following these steps:
http://www.dr-bob.org/babble/faq.html#names
Follow-ups regarding this should be redirected to Psycho-Babble Administration.
Thanks,
Bob
Posted by Zyprexa on August 15, 2010, at 22:54:21
In reply to Re: Treatment Resistant Chronic Insomnia - Disability, posted by EastC on August 14, 2010, at 12:41:34
Risperdal has a half live about the same as seroquel, and it deffinintly did not make me tired. Zyprexa has a half life of 24-48 hours. Seroquel, 6 hours. It might be wearing off in the middle of the night. Zyprexa would last all night and all day. It might work. You could get a free sample from your doc and try it. You could try a dose of 15mg or 20mg. High doses. Its worth a try. Zyprexa at the dose of 15mg makes me sleep all day, or 18 hours to be exact; new fresh zyprexa.
Posted by linkadge on August 16, 2010, at 21:56:13
In reply to Re: Treatment Resistant Chronic Insomnia - Disability, posted by EastC on August 14, 2010, at 12:41:34
Let me get this straight. You're taking seroquel (and other APs) and your afraid of the side effects from nortriptyline?
Linkadge
Posted by ed_uk2010 on August 17, 2010, at 14:27:12
In reply to Re: Treatment Resistant Chronic Insomnia - Disability, posted by linkadge on August 16, 2010, at 21:56:13
>Let me get this straight. You're taking seroquel (and other APs) and you're afraid of the side effects from nortriptyline?
I also thought that was rather unusual!
Among the APs, even Seroquel has been reported to cause tardive dyskinesia.
Posted by simcha on August 18, 2010, at 17:49:18
In reply to Re: Treatment Resistant Chronic Insomnia - Disability » linkadge, posted by ed_uk2010 on August 17, 2010, at 14:27:12
I've had chronic insomnia since I was about 1 or 2 years old according to my mother. Lately I find that 25mg of Trazodone knocks me out and now that I'm used to it, it no longer makes me groggy in the moring. It's much more effective over the long term than Ambien or Ambien CR ever was.
I'm quite frightened of all of the atypical and typical anti-psychotics. They all seem to have very nasty side effects along with weight gain. Currently my pdoc is considering adding Abilify to my regimen, possibly in place of one of my anti-depressants that may not be doing much. That scares me greatly. He said it might have the added advantage of inducing sleep such that I won't need the Trazodone. I don't know. I'm not sold, yet.
Last year, I finally got tested for sleep apnea and found out I have a mild case. I use a breathing machine while I sleep. It has improved the quality of the little bit of sleep I actually get. And I think it's improved my health overall to have better quality sleep.
I find it amazing how lack of sleep can wear the body down.
Posted by ed_uk2010 on August 19, 2010, at 15:10:43
In reply to Re: Treatment Resistant Chronic Insomnia - Disability, posted by simcha on August 18, 2010, at 17:49:18
>Abilify to my regimen........might have the added advantage of inducing sleep such that I won't need the Trazodone.
Hi Simcha,
I don't quite understand your pdoc's logic here. First of all, Abilify does not generally induce sleep. Secondly, why would stopping trazodone be advantageous? From what you said, the trazodone has proven to be both effective (even in the long term) and tolerable. Finding such a treatment (for chronic insomnia) is not easy.
Abilify can be helpful in some cases of treatment-resistant depression but it does cause adverse effects very frequently. In particular, restlessness (akathisia) is a problem.
Take care.
Posted by Zyprexa on August 19, 2010, at 23:54:45
In reply to Re: Treatment Resistant Chronic Insomnia - Disability, posted by simcha on August 18, 2010, at 17:49:18
Abilify never helped me sleep. It made me more tired the next day, due to a crapy nights sleep.
Posted by simcha on August 20, 2010, at 13:59:22
In reply to Re: Treatment Resistant Chronic Insomnia - Disability » simcha, posted by ed_uk2010 on August 19, 2010, at 15:10:43
Thanks! Yeah, I told my pdoc about my concerns with akathisia and the other side effects of Abilify. Therefore he chose (and I agreed to choose) Lamictal instead. For now I'm staying on the Trazodone, because it's cheap and it works. :)
Posted by ed_uk2010 on August 20, 2010, at 17:28:58
In reply to Re: Treatment Resistant Chronic Insomnia - Disability » ed_uk2010, posted by simcha on August 20, 2010, at 13:59:22
>Therefore he chose (and I agreed to choose) Lamictal instead. For now I'm staying on the Trazodone, because it's cheap and it works. :)
Hi Simcha,
I think that sounds like a good plan. By the way, do you find that sotalol makes you fatigued?
Posted by simcha on August 22, 2010, at 16:31:19
In reply to Re: Treatment Resistant Chronic Insomnia - Disability » simcha, posted by ed_uk2010 on August 20, 2010, at 17:28:58
ed_uk2010, No, I don't think the Sotalol makes me tired. Before my two failed catheter ablations, I was on ToprolXL (Metoprolol) and it gave me insomnia. It's a beta blocker and most people get sleepy on it.
Sotalol is a beta blocker too but it's also an anti-arrhythmic. I had to be in the hospital for 3 days in order to get on it because there is a serious side-effect that could happen in the first 3 days of treatment with Sotalol. It's called "Sudden Death," well actually it just stops your heart but it could amount to the same thing. It was scary to say the least. When I got out of surgery my heart rate was 160 beats per minute. The night after I took my first Sotalol dose, I was awakened by the heart monitor to the right side of my head that was giving an alarm. I saw that my heart rate was increasing. A team rushed in with a crash cart. I felt like my heart was going to leap out of my chest as it got to 220bpm or a little more. Then I felt my heart crash. It crashed down to 40bpm. Then it went up to 60bpm and they told me I'd be fine and took away the crash cart. No one told me that this would be likely but apparently it's what they were waiting for. It's called cardioversion. It's the resetting of the heart so that it can beat at a normal rate. I have to get an EKG every year to make sure that Sotalol isn't causing my heart to beat irregularly.
My heart issue is completely electrical. I have no plaque or abnormalities in my heart. There's no sign of heart disease. It's manageable with the medication until they find a surgery to cure my particular kind of Ectopic Atrial Tachycardia. The spot wasn't easily accessible on the wall of my right atrium. Apparently it's either inside the heart wall or on the outside of the heart wall, and that surgery is still very experimental. Therefore my heart rate is managed by medication for the time being.
Anyway, the side effects I notice from the Sotalol is that sometimes if I stand up too quickly I'll have a wave of dizziness because it brings my blood pressure lower than normal (I don't have high blood pressure without it), and I have a harder time exercising because my heart will only beat so fast. I have to be more deliberate and gradual about it and stop if I get overly winded. My cardiologist says that the heart can be conditioned to expand to pump more blood to provide more oxygen to the extremities but it won't beat anywhere near as fast as it would without the Sotalol keeping the heart rate low.
I do know that some people experience drowsiness on Sotalol. In fact all of my medications have warnings about driving, dizziness, drowsiness, and strong advice to abstain from alcohol. Sometimes I wonder how I'm not just propped up in a corner drooling somewhere unable to move when I look at all the warnings on my meds.
The short answer is, no, I don't get sleepy from the Sotalol (at least not enough to notice). :-)
Posted by ed_uk2010 on August 23, 2010, at 13:51:12
In reply to Re: Treatment Resistant Chronic Insomnia - Disability » ed_uk2010, posted by simcha on August 22, 2010, at 16:31:19
Hi Simcha,
>It's a beta blocker and most people get sleepy on it.
Well kind of, beta blockers frequently cause fatigue, but they don't normally cause drowsiness/sleepiness as such. I thought it was worth mentioning just in case you felt that it might be contributing to your depression.
That's quite a story about the cardioversion. You must have been very frightened. I would have been terrified.
I imagine that they monitor your EKG to check for QT-interval prolongation. Sotalol can cause the arrhythmia 'torsades de points', especially at high doses.
Anyway, I'm glad that sotalol has worked well for you :)
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