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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 9 of 9. This is the beginning of the thread.
Posted by Phillipa on March 29, 2013, at 9:38:04
Seems quite a few people have stopped their meds or cut drastically down. Or have started some sort of alternative form of treatment such as ketamine or DBS. Or herbs & vitamins. Or nothing. So how is this working for you? Personally have cut way down. Found that life circumstances are my biggest enemy. Phillipa
Posted by polarbear206 on March 29, 2013, at 11:17:46
In reply to How Many Have Given Up Meds For Other Tx?, posted by Phillipa on March 29, 2013, at 9:38:04
> Seems quite a few people have stopped their meds or cut drastically down. Or have started some sort of alternative form of treatment such as ketamine or DBS. Or herbs & vitamins. Or nothing. So how is this working for you? Personally have cut way down. Found that life circumstances are my biggest enemy. Phillipa
Should be posted to alternative board.
Posted by Tomatheus on March 29, 2013, at 11:39:35
In reply to How Many Have Given Up Meds For Other Tx?, posted by Phillipa on March 29, 2013, at 9:38:04
Phillipa,
The only medication that I'm currently taking is Abilify, and I only take 5 mg because I can't tolerate the fatigue that I experience at higher doses. I've tried taking several of the D2-blocking antipsychotics, and I found myself unable to tolerate a single one of them, sometimes due to fatigue, but sometimes also due to a worsening of my psychotic symptoms. So, as far as the treatment of my psychosis is concerned, 5 mg of Abilify seems to be the best medication for me. Without the Abilify, I'm just constantly inundated by ideas of reference, and with too much Abilify I'm far too fatigued to be anything close to functional. I can't say that I like the side effects that I experience on 5 mg of Abilify, but they're more or less tolerable and aren't as bad as being constantly bombarded by ideas of reference like I was before I was taking Abilify.
But my psychosis is only part of what I need to treat. The health condition that for me has been more debilitating than anything else has been what I now think is idiopathic hypersomnia, otherwise known as primary hypersomnia. For many years, what I suspect is idiopathic hypersomnia was diagnosed as some form of clinical depression, and it's involved low energy, extremely slow thinking, difficulty concentrating, and of course, sleeping too much and extreme difficulty waking. I've also characterized these symptoms as some form of chronic fatigue in the past, but the more I read about different diagnoses, the more I think that the diagnosis of idiopathic hypersomnia is probably the right fit for my mix of symptoms. Of course, I still want to talk to my psychiatrist before I can officially state that I have idiopathic hypersomnia, but that's the diagnosis that I suspect is most fitting for me.
As far as treatments for the condition that I suspect to be idiopathic hypersomnia are concerned, nothing has worked in the long run. No medication, no therapy, and no dietary supplement that I've tried so far has brought me lasting relief from the fatigue, difficulty concentrating, and excessive sleep that I experience as part of my condition. At present, in addition to the Abilify that I'm taking, I'm taking some Korean ginseng (which I suspect is doing very little), and I've also been regularly drinking moderate amounts of coffee for the past few days. Somehow, I'm doing better than expected with the coffee that I've been drinking for the past few days, but given my lackluster results with the beverage in the past, I'm not expecting to continue seeing the improvements in my energy, concentration, and sleep that I've been seeing recently. I will continue to drink the coffee that I've been drinking along with taking the Abilify and Korean ginseng that I'm taking in hopes that this little combination of mine might prove to be somewhat helpful, but I know that for me, treatment strategies that are somewhat helpful in the short run don't usually work out in the long run.
I recently thought that I had tried every medication that to me was worth trying for both my psychosis and what is probably idiopathic hypersomnia, but even more recently, I decided to try ordering some amisulpride from overseas to see if that might help either of the conditions that I suffer from (or both, if I'm lucky). I will probably begin to try the amisulpride once I receive my medication in a few weeks, and although I haven't had any long-term success with any medication in treating what's probably my idiopathic hypersomnia, I am cautiously optimistic about this medication. Unlike any other medication I've tried, amisulpride appears to activate the GHB receptors, and it's an effective antidepressant medication at low doses. Others on this board have reported noticing a reduction in the severity of their hypersomnia while taking amisulpride, which is something that I find to be promising. I still think that there's a good chance that amisulpride may not work out for me in the long run (as the case has been with every treatment that I've tried), but I also think that there's some reason to be somewhat hopeful about it.
So, anyway, I think that this about sums things up as far as where I'm at with my medications and other treatments is concerned. I would say that my experiences with using medications to treat what's probably my idiopathic hypersomnia have not been positive in the long run, but I would also say that nothing else has proved to be effective in the long run either and that trying something is better than trying nothing. I'm hoping that between the coffee that I'm drinking now and the amisulpride that I may try that something will give me at least some long-term relief, because surviving with the fatigue, difficulty concentrating, and hypersomnia that I normally have to contend with is no way to live. The world needs me to be at least halfway functional, and I'm going to keep trying to get myself to be that way (and more importantly, STAY that way) by using the chemical tools that stand the best chance of helping to make that happen.
Tomatheus
Posted by Phillipa on March 29, 2013, at 20:56:18
In reply to Re: How Many Have Given Up Meds For Other Tx?, posted by Tomatheus on March 29, 2013, at 11:39:35
Seriously have you had a sleep study done? If you snore, or other during the night could also be a cause of hypersomnia. Did anyone ever suggest one and that a Cpap might help with fatigue? Sorry this is happening for you. But so far you have found one med at a low dose that's helping you. Phillipa
Posted by Tomatheus on March 29, 2013, at 21:19:05
In reply to Re: How Many Have Given Up Meds For Other Tx? » Tomatheus, posted by Phillipa on March 29, 2013, at 20:56:18
> Seriously have you had a sleep study done? If you snore, or other during the night could also be a cause of hypersomnia. Did anyone ever suggest one and that a Cpap might help with fatigue? Sorry this is happening for you. But so far you have found one med at a low dose that's helping you. Phillipa
Hi Phillipa,
No, I haven't had a sleep study done. I think I'll ask my psychiatrist at my next appointment if he thinks going to a sleep specialist for a sleep study might be a good idea. As far as I know, I don't snore, but I guess I don't know for sure.
Aren't CPAP machines used for sleep apnea? I guess I can't rule anything out for sure, but my blood pressure is usually on the low side, and I don't think that I snore (although, as I said, I don't know for sure), and I think that high blood pressure and snoring are signs of sleep apnea. So, I tend to think that sleep apnea is most likely not the cause of my hypersomnia, although I can't say with 100 percent certainty that this is the case.
I don't know. A sleep study is probably something that would be worth pursuing. I'll definitely keep it in mind, especially if all else fails. Thanks for the post.
Tomatheus
Posted by Phillipa on March 29, 2013, at 23:14:49
In reply to Re: How Many Have Given Up Meds For Other Tx? » Phillipa, posted by Tomatheus on March 29, 2013, at 21:19:05
You're welcome. The fatigue you speak of the cause is sometimes found with a sleep study. Phillipa
Posted by herpills on March 30, 2013, at 15:48:31
In reply to Re: How Many Have Given Up Meds For Other Tx?, posted by polarbear206 on March 29, 2013, at 11:17:46
> > Seems quite a few people have stopped their meds or cut drastically down. Or have started some sort of alternative form of treatment such as ketamine or DBS. Or herbs & vitamins. Or nothing. So how is this working for you? Personally have cut way down. Found that life circumstances are my biggest enemy. Phillipa
>
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> Should be posted to alternative board.Why?
Posted by herpills on March 30, 2013, at 15:54:33
In reply to Re: How Many Have Given Up Meds For Other Tx? » polarbear206, posted by herpills on March 30, 2013, at 15:48:31
> > > Seems quite a few people have stopped their meds or cut drastically down. Or have started some sort of alternative form of treatment such as ketamine or DBS. Or herbs & vitamins. Or nothing. So how is this working for you? Personally have cut way down. Found that life circumstances are my biggest enemy. Phillipa
> >
> >
> > Should be posted to alternative board.
>
> Why?Sorry just realized maybe I interpreted your statement wrong. I was reading it as "...it doesn't belong on the med board..." because I've seen messages like that before, but if you meant because people who only read alternative would be able to answer this as well I agree
I actually wish the med and alternative boards were on the same page...dr bob please just combine them! ...And the term is misleading, for some people the psych meds are the alternative!
Posted by Phillipa on March 30, 2013, at 21:14:00
In reply to Re: How Many Have Given Up Meds For Other Tx? » herpills, posted by herpills on March 30, 2013, at 15:54:33
Herpills no that's what was meant. But agree when the boards were created years ago. Many treatments used and approved now were not available. Such as DBS, And things such as Deplin. Feel free to add others. We should compile a list. Times have changed. Also the doses of many meds have been lowered as new data has emerged. Thanks for the suggestion. Phillipa
This is the end of the thread.
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