Posted by Lunette on December 1, 2011, at 20:52:25
In reply to Re: help with effective combination of med/supplements, posted by bleauberry on November 5, 2011, at 12:58:17
wow thank you
you may be right
it does seem like CFS/ME symptoms fit (in combination with the C-PTSD)funny I decided to ask my PDoc to wean me off Wellbutrin and in doing so I discovered something very odd. We switched to Wellbutrin SR 100 from XL and I was finding it was making me very sleepy. So instead of taking it in the morning I started taking it in the evening and I have been having the best sleeps in ages. It helps me to get to sleep where nothing else was working and the gabapentin helps keep me asleep.
so go figure, I am definitely have paradoxical effect as for most people it is activating and causes insomnia!
I am also hoping to switch off of dexedrine next and experiment with micro dose of selegenine as an alternative.
also I have begun making teas of kava kava, st john wort and gotu kola, ginko etc
I read somewhere that a Dr who is an expert in CFS/ME actually noticed that patients had this paradoxical effect when taking meds that were supposed to be stimulating... and also that patients responded better to gabageric and dopaminergic meds rather than SSRIs which is so true for me. I could not tolerate any of the SSRIs yet wellbutrin, gabapentin and dexedrine have all had positive effects for the most part.
although with some memory and cognitive issues
I am hoping switching to selegiline will address this and perhaps help with the daytime fatigue.
I am reluctant to go off the wellbutrin sr altogether at the moment as it is having such a positive effect on my sleep.
although I am still very fatigued during the day even if I take dex.
I also read that baclofen is highly recommended for people with CFS/ME. have you tried that?
it might be a nice alternative to the gabapentin which is pooping out on me too.. or perhaps on alternate nights?
I have stoppped taking the nortriptyline as I really dont want be to taking so many meds if not necessary.
apparently people with PTSD are also very low in magnesium and gaba which also makes sense in my case.
eventually it would be wonderful if I could switch over to St John's Wort and other natural supplements only but may have to do that gradually as my PDoc does not want me to make too many changes all at once being I am so sensitive. And my insurance does not cover natural supplements.
I wonder if anyone else has had this same set of reactions or experiences or similar??
fascinating to learn more about PTSD and CFS/ME and that I am not alone in my unusual reactions
thanks again so much for your input
I look forward to morecheers!
> I used to spend a lot of time lurking at forums of lyme, ms, chronic fatigue, and other related bizarre mystery diseases. Depression accompanied by exquisite sensitivities are almost universally common with those groups of patients.
>
> As you described yourself you described me, as well as thousands of others with lyme and other stuff. I'm just saying, I don't think you are dealing with just depression here. There is something else going on which is causing it, but which we have clues where to look. For example, in addition to any brain supplements, think in terms of antimicrobial and anti-inflammatory.
>
> I've had to do the same thing as you with any med trials....micro doses. My lyme doctor did the same thing.....he would start sensitive patients, which most lyme patients are, with 1 drop of lexapro....that is 1/10th of a milligram. And then work up slowly from there just as you have done.
>
> I'm doing the same thing now with the combo of Rhodiola and SJW. Which by the way, considering I am also super sensitive, and you apparently do best somewhere in the dopamine/NE/Gaba circuits, so both of those fit that profile pretty nice. Some lemon balm on the side for any additional calming needed, and its synergy with SJW, I dunno, if you are showing interest in alternative treatments those would be at the top of my priority list. Also on the list would be Source Naturals Resveratrol 40mg caps or tabs (must be the yellow bottle which is made from japanese knotweed not the pink bottle made from wine. It's actually primarily the other benefits of the knotweed you want more than the resveratrol in it, but resveratrol in itself is a miracle supplement I think every psych patient should utilize. It is not psychoactive, but sets the stage for things to be...for example by blocking or soaking up toxins which would otherwise being doing more of the damage that is causing the depression (for example).
>
> I am so sensitive I can feel a huge difference between 3 drops of SJW and 6 drops. Six drops feels horrible, really bad....achy, sad, gloomy, tired. 3 drops is almost invisible but feels somewhat peppy in a background way. Besides its antidepressant properties, SJW is also a fairly strong antimicrobial and is said by herbalists to heal damaged nerves. Some lyme patients on the internet claim it was SJW that healed their damage after the lyme had been eradicated. Rhodiola pretty much does what they say it does, but in addition to all that I think it is a good mood stabilizer. Not instant, but kicking in over a few weeks. I had to start as low as 12.5mg b.i.d. and work up quite a bit higher from there as tolerated. I have discovered that, with me anyway, rhodiola is very finnicky about the dose size. For me, too high of a dose feels depressing and very tired lethargic. Too low of a dose and I can't feel it. The right dose doesn't seem to have any post-dose effect but instead works around the clock like medicines do. When I first started it though it was uncomfortably stimulating. Glad is said to go away fairly quick and it did.
>
> Ever tried a gluten free or dairy free diet? Might want to try those for a couple weeks as a test, just to see. Intolerance of either or both of those is very common with med sensitive folks. I've been gluten free for 3 years now, discovered accidentally on a lab test that wasn't really looking for that. It's more common than is currently recognized.
>
> DLPA might be good for you. But as with everything else you do, it would have to be started at micro doses.
>
> Anyway, best wishes. Sounds like you are on a path to wellness.
>
> > Please forgive the long post. I will try to fill in details as best I can.
> >
> > I have long-term C-PTSD with related insomnia, chronic fatigue, inattentive ADD, depression and occasional OCD. Oh and I am 52 so it seems I am close to menopause too so hormones may be a factor to consider as well.
> >
> > I would like to move away from meds if possible or at least cut down and enhance with supplements.
> >
> > I am super-sensitive to meds even at micro-doses and so it has been really challenging finding the right cocktail.
> >
> > I can not tolerate most meds at all and often times I have paradoxical effect to what the med is supposed to do. I can not tolerate alcohol.
> >
> > anyway, I could never tolerate any of the SSRI's, nor sleep meds. Crazy side effects with Nardil many years ago. Could not tolerate Amitriptyline, Remeron. Hated Cymbalta > worst side effects ever. Trazadone actually was good for helping me sleep but after several weeks it gave me recurring migraines/headaches. Oh and same with antihistamines.
> >
> > So I really thought I could not do any meds. But as it happens I have been able to tolerate the following for the last year or so:
> >
> > * Wellbutrin XL 300mg
> > * Dexedrine between 5-15mg 1-4 times a week.
> > * Gabapentin 600-1200 mg for sleep
> >
> > The best med was the gabapentin which I found was actually quite a mood lifter with anti-pressant, anti-anxiety effects, And for a while I even felt euphoria. And few side effects. I do think that it has had a negative effect on my cognition and memory though which I sense is also made worse by the Wellbutrin. But the gabapentin seemed like such a really nice med otherwise and it helped me have the best sleep in years.
> >
> > Unfortunately, I feel that all of them have pooped out on me and I am struggling to find something else that works. Also the wellbutrin at 300mg made my hair fall out in clumps. I noticed when I went down to 150mg my hair did not fall out so I am at 150 again this week and am hoping to phase it out completely or at least for a few months holiday if I can not find a better combination.
> >
> > I have just added Nortriptyline about a month ago and at first even at 2.5mg it made me so wired and drugged but could not sleep until the next morning and then I would crash and sleep most of the day with brutal headaches and body aches. So instead I began taking it in morning at micro-doses and after a few days, I actually found it made me feel quite alert which was a surprise because I was taking it to help me sleep! I have slowly built up to 5mg and been moving the time up a little each day as I noticed that even though I would feel alert that I also was beginning to feel tired/sleepy too. So I am experimenting with taking it late afternoon and also early evening and am going up to 10mg this week. Perhaps it will take a little more time and a higher dose for it to be effective for sleep so I am giving it more time as it seems to have a positive effect on ADD too. The nasty side effects seem to be much less so now so fingers crossed this may actually be a good replacement for the Wellbutrin. Side effects I am noticing are dry mouth and a little constipation but I am on such a small dose that it seems to be manageable as I am on a high fiber veggie diet with lots of water and large dose magnesium.
> >
> > I am feeling like I have given the meds a good shot but would like to find a more natural alternative that will cover more bases.
> >
> > I have had great luck with Gabapentin and also with natural GABA although it is expensive. So I am trying taking some Taurine, Inositol and Mags to help support gaba. I have started magnesium glycinate/citrate/malate as well as transdermal mag chloride.
> >
> > In Daytime
> > * high quality B-Complex which incldues P-5-P
> > * Rhodiola 250mg
> > * Vit D 2,000
> > * Methyl B12 2,000
> > * Glutamine 2-3grams
> > * Mag 150 mg
> > * Omega Oils with DHA
> > * Lecithin 1 tablespoon
> > * Wellbutrin 150 (down from 300)and would like to phase out
> >
> > In evening:
> >
> > * Magnesium 150 x 3 divided doses from dinner until 1am
> > * Taurine 2-3 grams from dinner until bedtime
> > * Gabapentin 900 mg in three divided doses from dinner until 9:30pm
> > * Inositol approx 3 grams
> >
> > I only take Dexedrine in very low doses as needed but I would like to stop taking it altogether. I did try to come off of it completely and noticed I slid into a deep depression so I am only taking a little each week until I can figure out a better alternative. I find it is calming and has some antidepressant properties for me. But I am not keen on being on stimulants long term.
> >
> > oh I should add that I have not been able to tolerate melatonin but have had some luck in the past with 5-htp to help me sleep but it poops out quickly so I can not take it regularly.
> >
> > I would like to come off the wellbutrin and am wondering if St John's Wort may be the best alternative for me as from what I have heard it enchances Dopamine, Gaba, and all the neurotransmitters so it seems like an obvious choice.
> >
> > Is it safe to take St. John's Wort with small dose of nortriptyline 10mg? Can I take it to withdraw from wellbutrin and dexedrine. Would it be better to try selegenine first?
> >
> > is there anything I can add or a better combination to help with chronic fatigue, cognition, memory, sleep, depression and menopause? My energy is so low during the day even on the days that I get some sleep so I don't want to be on meds that make feel like a zombie and even less functional.
> >
> > I am eating pretty healthily with extra protein and greens powders in the mornings too. I do not drink coffee but I drink some teas, oolong, green and roobios and other herbal teas.
> >
> > I really am feeling drawn to the St Johns wort and Kava so if you can consider that in the mix I would be most grateful for your thoughts and guidance.
> >
> > I have dabbled with other things too that had some promising effects so perhaps it may be worth augmenting with one or some of these too: L-theanine, ashwaghanda, lemon balm tea, oat straw, skullcap, gingko, tyrosine. .. all of these were limited use so not sure how effective or consistent they may be but no noticeable side effects
> >
> > I can not tolerate Valerian so that is out.
> >
> > I am sure there is more I am missing.
> >
> > Can you please review all of this and give me some advice. Are there better times to be taking the supplements or combinations? Is this a good plan for withdrawing from WB and Dex too?
> >
> > thanks for your help
> > Lunette
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poster:Lunette
thread:1001066
URL: http://www.dr-bob.org/babble/neuro/20110604/msgs/1004108.html