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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 12 of 12. This is the beginning of the thread.
Posted by honey on June 8, 2005, at 18:30:10
Hi,
I just joined the board yesterday - looks like just the place I've been looking for for ages for informed advice! Nice to be here.
Brief intro: I've been diagnosed with ME/CFS for 12 years, and my health has dipped very badly in the last 9 months - virtually house/bed-bound suddenly. I also have a bad anxiety, and depression, if I can separate the two which I think I can - very different sensations at different times. I developed these about 5 or more years into my illness.
I've tried about 8 classic anti-depressants over the years, including lots of SSRIs, and some of the related things like Effexor, and a tricyclic (amitryptiline). They did nothing for my mood whatsoever, and a few of them had dramatically awful side-effects. I stuck with all but the Effexor for the full 8 weeks as commanded by doctors at the time.
Having given up/been exhausted by the process, I've been using benzos for anxiety: valium seems to help for me a bit, but I'm concerned about dependence. I take 10-20mg/day right now. I tried clonazepam (generic Klonopin, unfortunately), but it didn't seem to work as well, and with hindsight may have enhanced the depression. Hard to tell as my body is going through a myriad of infections just now too.
My main problems specific to this board then are: anxiety, depression and extremely poor quality sleep. I don't have trouble getting to sleep, but I seem to be close to consciousness all night, have vivid often unpleasant dreams, and I'm pretty sure I'm getting little or no delta/stage 4 sleep. My ME/CFS specialist tells me this is vital to address my illness. I should also add that I'm currently on 2000 microgrammes B12 shots per week to address the ME/CFS, and may increase these soon - not effective so far.
I'm on a ton of minerals and vitamins, and cycling slowly through benzos, and minerals like magnesium which I'm told may promote restful sleep. Also ambien/zolpidem for a bit. Nothing's helping one bit. Also tried the classic herby things like passionflower etc. I have nitrazepam to try, when my tailing off from clonazepam is complete (moving slowly), but I'm scared of its knock-out effects in the morning. I'm exhausted from the CFS/ME anyway!
Recently I also tried 5HTP - 100mg for a few nights and 200mg or a few - it seemed to leave me completely exhausted the next day which didn't seem to be the case for others. I may try again, but it didn't improve the quality of my sleep over a short period anyway, or mood. Tried St John's Wort a long time ago - again no help.
I'm really sorry for the long, long post. I'm just looking for any advice on what might be good to try next for the nasty combination of awful quality sleep/depression/anxiety. I'm particularly interested in SAM-e, but confused by the different claims of effectiveness of different brands. Can anyone recommend one, possibly with a UK supplier?
Also I read conflicting reports that TMG may work as well as SAM-e at a cheaper price because it's a precursor, and others that claim that this is unproven, and is only useful to take *with* SAM-e to reduce homocysteine (along with B12, B6 and folic acid - any idea on amounts?). Or can I rely on some of the advertised SAM-e "complexes" which contain these in the same pills to keep the homocysteine down? And is SAM-e likely to energise me too much in the day and make my sleep worse?
I've read lots of really useful articles by people like Larry and I'm trying to guess at other things to try. Tryptophan? Taurine? Niacinamide? And what kind of doses of magnesium should I be aiming at, and does it need other minerals to help it along? Such a lot of options, and I'm very sensitive so need to proceed slowly, so I need good guesses on what to start with, as trying may take so long. Is magnesium citrate a reasonably well absorbed form (I used to use oxide, but heard it wasn't)? I had a red-cell magnesium test and *wasn't* deficient, but I hear these may not be reliable.
I should also add I'm on a very restrictive diet just now: no refined sugar, not wheat or cereal or additives and no dairy, so have to be careful about tablet contents.
I'm on a lot of other supplements: Vit C 1000mg/day, D (2000 IU/day), Gingko Bilbao (for hearing loss/tinnitus). I hear it's likely that my sleep problems may be due to disturbance in the HPA access, but I'm desperate to find something to promote deeper sleep. And something to relieve the anxiety/depression, at least a bit.
Sorry this is so long with so many questions. If anyone can answer even a few, I'd be really grateful...
Honey
Posted by honey on June 8, 2005, at 18:37:47
In reply to SAM-e good UK source? Good option for me?, posted by honey on June 8, 2005, at 18:30:10
Sorry, I should add I've tried melatonin too. Again, didn't help sleep quality (tried lots of different doses) and I think it may have given me a brief but very heavy depression as some others have reported. Not taking it now.
Finally I won't list my other health problems, except to say I've been diagnosed with a parasite Blastocystis Hominis recently, which seems to be causing havoc (I suspect because of compromised immune system in CFS/ME), and may have to take a dose of heavy antibiotics soon. Yuck.
Posted by ed_uk on June 9, 2005, at 7:10:00
In reply to SAM-e good UK source? Good option for me?, posted by honey on June 8, 2005, at 18:30:10
Hi,
>I tried clonazepam (generic Klonopin, unfortunately)........
I didn't know there was a clonazepam generic in the UK. I've only ever come across the name-brand Rivotril.
Ed.
Posted by honey on June 9, 2005, at 7:31:23
In reply to Re: SAM-e good UK source? Good option for me? » honey, posted by ed_uk on June 9, 2005, at 7:10:00
Sorry Ed, that's what I meant but I may be confused. I meant "not real Klonopin" as in the US brand-name, but maybe it's the same? Anyway I stopped now...
Posted by ed_uk on June 9, 2005, at 14:24:10
In reply to Re: SAM-e good UK source? Good option for me? » ed_uk, posted by honey on June 9, 2005, at 7:31:23
Hi honey!
Rivotril is the 'real' stuff!!! It's made by Roche - the people who make Klonopin.
Ed.
Posted by honey on June 9, 2005, at 16:11:18
In reply to Re: SAM-e good UK source? Good option for me? » honey, posted by ed_uk on June 9, 2005, at 14:24:10
> Rivotril is the 'real' stuff!!! It's made by Roche - the people who make Klonopin.
>
> Ed.Thanks Ed - didn't know that - one more reason knocked off my list about why it didn't work then :)
Bit surprised no-one responded to other questions in my mail - was it too long? I'm new here so I'd be really obliged if someone would tell me if I broke the board's protocol in anyway, or did something silly... or if I'm just being impatient. It's just that I'm quite ill, often desperate, and looking for advice. I'm really trying to read the archives and put together previous advice, but ME/CFS leaves me awfully fatigued and brain-fogged along with everything else, so please don't think I'm being sniffy..!
Posted by Larry Hoover on June 10, 2005, at 9:16:06
In reply to Re: SAM-e good UK source? Good option for me?, posted by honey on June 9, 2005, at 16:11:18
> Bit surprised no-one responded to other questions in my mail - was it too long?
No, not too long. Perhaps others were deferring to me. That happens. Or, they're just busy. That happens too. Traffic on this board is sporadic.
I personally have had a very trying week, and I may or may not address you questions all, just now. In due time, you can be assured of attention.
> I'm new here so I'd be really obliged if someone would tell me if I broke the board's protocol in anyway, or did something silly... or if I'm just being impatient.
The latter. We have no protocols that I know of.
> It's just that I'm quite ill, often desperate, and looking for advice. I'm really trying to read the archives and put together previous advice, but ME/CFS leaves me awfully fatigued and brain-fogged along with everything else, so please don't think I'm being sniffy..!
You didn't get to your present state of being in one day, and you're not going to move away from it one day, either. I share many of your issues, personally, and due to the strain of the week, I must measure my ability to respond.
If anything you take from discourse with me vis a vis ME/CFS, it's that you *must*, without fail, listen and obey when your body says "rest".
So, I encourage the excitement you express, but I also encourage patience. All in due course.
Lar
Posted by honey on June 10, 2005, at 9:59:22
In reply to Re: SAM-e good UK source? Good option for me? » honey, posted by Larry Hoover on June 10, 2005, at 9:16:06
> So, I encourage the excitement you express, but I also encourage patience. All in due course.
>
> LarWhoops, sorry. Understood. Thanks for the response Larry.
Posted by ed_uk on June 10, 2005, at 11:52:58
In reply to Re: SAM-e good UK source? Good option for me?, posted by honey on June 9, 2005, at 16:11:18
Hi honey!
>Bit surprised no-one responded to other questions in my mail - was it too long?
No, it was fine :-) This board's much quieter than the main psycho-babble medication board.
Kind regards,
Ed.
Posted by River1924 on June 12, 2005, at 22:38:34
In reply to SAM-e good UK source? Good option for me?, posted by honey on June 8, 2005, at 18:30:10
Hi,
Sorry, but I don't know what ME is? It probably isn't relevant to my answer.
I'm in the States and SAM-e is over the counter (which is too bad here because I think more people would use it if insurance covered it... it is expensive.) For me, SAM-e was horrible. I got such headaches on it. (St. John's Wort did the same thing.) I've never heard of this side-effect and I may be the only one it happened to but I thought I'd mention it.
As for your sleep, this info might interest you (which is from of all places http://www.recipeland.com:)
"Hypnogogia, also spelled Hypnagogia, is the name of an experience a person can go through when falling asleep. When in a hypnogogic state a person can have lifelike auditory, visual, or tactile hallucinations (known as hypnogogic hallucinations), perhaps even accompanied by full body paralysis. The invididual is aware that these are hallucinations; the frightening part, in many cases, is the inability to react to them, even being unable make a sound. In other cases one may enjoy truly vivid imaginations. The term was coined by the 19th century French psychologist Alfred Maury.
It is not an uncommon occurrence with 30 to 40 percent of people experiencing it at least once in their lives. However, it can be a sign of other problems such as narcolepsy or temporal lobe epilepsy."
Recently, I've been looking for something to increase "slow wave sleep" to improve some cognitive probs I have. In the states, the only thing I've come across is a highly restricted drug called Xyrem.
Peace, River.
Posted by honey on June 18, 2005, at 10:54:17
In reply to Re: SAM-e good UK source? Good option for me? » honey, posted by River1924 on June 12, 2005, at 22:38:34
River,
Thanks so much for your reply - I've been quite ill in the meantime - I have a chronic bowel parasite infection on top of everything else - and desperate for good advice.
> Sorry, but I don't know what ME is? It probably isn't relevant to my answer.
That's ok - ME is more or less the same as CFS/CFIDS/Chronic Fatigue Syndrome in the US (although people argue over criteria).
Thanks for your comments on SAMe - I guess I'll just have to try it and see. I had no adverse reaction (in fact no reaction) to St John's Wort... but it's worth being prepared - thanks.
I'm desperately depressed at times, and mixed up with chronic anxiety and this deathly illness, and my seeming lack of reaction to every antidepressant out there, am just looking for advice on what might be best to try first, from the list in my original mail - all good suggestions I gleaned from this board.
Thanks also for your references to hypnogogia etc.
It may be time to request a sleep study, but being bedbound more or less, this would be a massive feat for me.I'm sorry to read (I think?) that Larry's not around - I was so looking forward to a reply. Can anyone else make any suggestions on my original mail, what's helped them, etc.? Anything anecdotal will do. I'm just rather desperate, and the orthodox/SSRI/etc route got me nowhere.
Honey
Posted by Ktemene on June 18, 2005, at 22:00:38
In reply to Re: SAM-e good UK source? Good option for me?, posted by honey on June 18, 2005, at 10:54:17
Hi Honey,
I'm sorry to hear you have been ill. I am not one of the smarter people around here, but since a lot of them are not available, I am going to try to answer some of your questions, mostly by quoting the smarter people.
You say that anxiety and trouble sleeping are among your problems. First of all, in the U.S. there is a new medication called Lunesta. Many people find it very effective in countering insomnia (I am one of them). I understand that a very similar drug has been available in the U. K. for some time, called zopiclone. You might look into this possibility. The following are among the supplements that posters on Psycho-Babble have recommended for countering anxiety or insomnia.
For insomnia:
Tryptophanmagnesium - see JLx's post on magnesium beginning a very good thread on it: http://www.dr-bob.org/babble/20030329/msgs/214008.html
Also, Ron uses magnesium as a sleep aid: http://www.dr-bob.org/babble/20030514/msgs/226551.htmlA low dose of the antidepressant Remeron is very effective for sleep; some other medicines that are used off-label for insomnia are Abilify and Doxepin and Neurontin and Trazodone.
For Anxiety:
Taurine - Larry Hoover strongly recommends taurine: http://www.dr-bob.org/babble/alter/20050323/msgs/482060.htmlTryptophan - Larry also recommends tryptophan.
Niacinamide- this is another favorite of Larry's : http://forums.psychcentral.com/showflat.php?Cat=&Number=153792&page=1&view=collapsed&sb=5&o=&fpart=1
Some other anti-anxiety supplements that posters have recommended are: L-Theanine, Holy Basil, Ashwagandha, Gotu Kola.
For Depression:
Fish Oil - see Larry on fish oil: http://www.dr-bob.org/babble/20021025/msgs/125809.html
Loops has had success in finding the right balance of fatty acids: http://www.dr-bob.org/babble/alter/20050510/msgs/508519.htmlMagnesium - see JLx's thread on magnesium above.
Vitamin D - if you are house-bound you may not have enough Vitamin D - see this thread on Vitamin D and depression: http://www.dr-bob.org/babble/20050202/msgs/451941.html
Tryptophan – Larry’s recommendation for dosage: http://www.dr-bob.org/babble/alter/20050510/msgs/503419.html
SAM-e/TMG+folate+B12+B6 I don't think there are any studies showing that TMG+folate+B12+B6 works as well as SAM-e, but there is an argument from the biochemistry that it should would as well. See the following posts:
http://www.dr-bob.org/babble/alter/20050414/msgs/493523.html
http://www.dr-bob.org/babble/alter/20031104/msgs/278173.htmlOf course there are lots of other suggestions that posters have made. If you continue to search the archives of Psycho-Babble, you will find lots of helpful information. Another forum you might check out is Psych Central. http://forums.psychcentral.com/ Larry Hoover often posts there, and you could address questions to him there, which I am sure he would be happy to answer, if he is feeling well enough.
Good luck, and let us know how you are doing!
Ktemene
> River,
>
> Thanks so much for your reply - I've been quite ill in the meantime - I have a chronic bowel parasite infection on top of everything else - and desperate for good advice.
>
> > Sorry, but I don't know what ME is? It probably isn't relevant to my answer.
>
> That's ok - ME is more or less the same as CFS/CFIDS/Chronic Fatigue Syndrome in the US (although people argue over criteria).
>
> Thanks for your comments on SAMe - I guess I'll just have to try it and see. I had no adverse reaction (in fact no reaction) to St John's Wort... but it's worth being prepared - thanks.
>
> I'm desperately depressed at times, and mixed up with chronic anxiety and this deathly illness, and my seeming lack of reaction to every antidepressant out there, am just looking for advice on what might be best to try first, from the list in my original mail - all good suggestions I gleaned from this board.
>
> Thanks also for your references to hypnogogia etc.
> It may be time to request a sleep study, but being bedbound more or less, this would be a massive feat for me.
>
> I'm sorry to read (I think?) that Larry's not around - I was so looking forward to a reply. Can anyone else make any suggestions on my original mail, what's helped them, etc.? Anything anecdotal will do. I'm just rather desperate, and the orthodox/SSRI/etc route got me nowhere.
>
> Honey
>
>
This is the end of the thread.
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