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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 18 of 18. This is the beginning of the thread.
Posted by Sigismund on October 2, 2008, at 14:48:00
I wouldn't like to start with 50mg.
6.25mg I could easily notice, the first thing being a feeling of alertness that penetrated my morning fog and reminded me not to take it on an empty stomach again.
Other than that it feels tolerable, a bit like tyrosine or DLPA.
I certainly need something, but will this be it?
I don't know how people get the strength for all their med trials.
It has a much longer half life than tianeptine, for what that's worth. I wonder why it has to be taken tds?
They say it does not aggravate insomnia, but we shall see.
Posted by Phillipa on October 2, 2008, at 16:20:51
In reply to Milnacipran, posted by Sigismund on October 2, 2008, at 14:48:00
Well Sigi the best of luck to you. Love PJ
Posted by bleauberry on October 2, 2008, at 17:46:28
In reply to Milnacipran, posted by Sigismund on October 2, 2008, at 14:48:00
For me it did aggravate sleep for about 3 nights and then after that sleep was really good. Just like you, I find tiny doses quite powerful. The most I could ever handle in a day was 6.25mg TID, but 6.25 BID was better. I see others take 50mg, 100mg, even 200mg, and all I can say is wow. How do they do that?
Studies showed that lower doses can work just as good as higher doses except that the lower doses take longer.
Milnacipran is a med I keep coming back to when things just stay bad for too long.
Posted by Nadezda on October 2, 2008, at 18:00:47
In reply to Milnacipran, posted by Sigismund on October 2, 2008, at 14:48:00
I'm very curious to know how it affects you, and how it compares to other things.
I was hoping to try it, but my pdoc didn't want to because it hadn't yet been okayed by NIH-- at that time-- and was only legal in Europe. For some reason, that didn't satisfy him. I got onto something else, and that's been pretty good, so I still haven't. But I like to keep track of alternatives, just in case...
Nadezda
Posted by Sigismund on October 2, 2008, at 22:07:48
In reply to Re: Milnacipran » Sigismund, posted by Nadezda on October 2, 2008, at 18:00:47
It's not my idea of a good drug but it's not bad either, so I should be able to persist.
I noticed this sense of calmness or satisfaction that came along with the NE feel.
I wondered to begin with if it was a little like moclobemide. I didn't need much of that either and never took more than 150mg/d. This is more calming than moclobemide. I don't much like the NE feel that comes really quickly. Because it's an NE feel there's a bit of difference between this and Parnate. I suspect it will be a more reliable AD than tianeptine, even though to begin with I *liked* tianeptine.
I'll take another smidgen after lunch and see how it goes.
Posted by Bob on October 2, 2008, at 23:45:36
In reply to Milnacipran, posted by Sigismund on October 2, 2008, at 14:48:00
There's still no sign of Milnacipran being available in the US, right?
Where are you guys getting your Milnacipran?
Posted by Bob on October 2, 2008, at 23:53:50
In reply to Milnacipran, posted by Sigismund on October 2, 2008, at 14:48:00
>
> I don't know how people get the strength for all their med trials.
>
I fully and completely agree. I am dumbfounded by how people can come on and off major drugs in an almost seemingly effortless manner compared to the extreme difficulty I have.What's worse, it seems like the professional medical community doesn't cater much to people that have trouble with meds - after all, what can they do if you can't tolerate the treatments. I've noticed that few drug studies mention patients having trouble with side effects or reduced quality of life in their conclusions. Again, I guess there's nothing that can be done, so why talk about it?
- Bob
Posted by Sigismund on October 3, 2008, at 0:49:58
In reply to Re: Milnacipran » Sigismund, posted by Bob on October 2, 2008, at 23:45:36
No Bob, I'm in Australia, not the US, and we don't have it here either.
Posted by bleauberry on October 3, 2008, at 16:31:05
In reply to Re: Milnacipran, posted by Sigismund on October 2, 2008, at 22:07:48
> It's not my idea of a good drug but it's not bad either, so I should be able to persist.
Success depends on it. The initial effects are not the same as the therapeutic effects.
>
> I noticed this sense of calmness or satisfaction that came along with the NE feel.The initial effects can be nice. Happens with me too. I'm puzzled how a med so strong on NE can be calming, but it is. I read somewhere it might have something to do with its rapid effects on the serotonin 5ht1a receptor.
>
> I'll take another smidgen after lunch and see how it goes.If you can feel 6.25mg then you know for sure it is doing something. After a week or so you should become more tolerant of it and up the dose to twice a day. All I can suggest is stick with it. Try to forget about it day to day and set your sites on the calender for two weeks from now, 3 weeks from now, and 4 weeks from now. Make it a goal to hit those dates and still be taking the med the whole time. I did read somewhere that 15mg worked for someone, so even though typical doses are higher, low ones have actually worked.
Posted by Sigismund on October 3, 2008, at 16:39:49
In reply to Re: Milnacipran, posted by bleauberry on October 3, 2008, at 16:31:05
That's good advice. Thanks.
Yesterday I took around 2/3 of 25mg.
I might aim for a daily dose of 25mg for a start.
I read somewhere that the side effects become more pronounced above 50mg.
Posted by Sigismund on October 5, 2008, at 1:56:47
In reply to Re: Milnacipran » bleauberry, posted by Sigismund on October 3, 2008, at 16:39:49
On day 2 I took 12.5mg (so I thought it was) for my second dose of the day and that was OK, albeit with a few vodkas.
Day 3 I took 12.5mg am, thinking it would be OK. So I get this bloody awful nasty feeling, one of the many varieties that seems to come with psych drugs, not too much, not too bad, but not too good either. The very beginnings of urinary difficulty and goosebumps, hardly worth talking about except that it's relevant.
So my second dose on the third day was back to around 8mg, which was better....like a mixture of something nice with something awful.
So maybe my best plan is to take sufficiently little to avoid the nasty stuff, and to do it for weeks, and see how things go?
I can't say it's done much for my state of mind, the contents of which are unprintable, but isn't that the usual thing?
Posted by Nadezda on October 5, 2008, at 11:28:22
In reply to Re: Milnacipran plan, posted by Sigismund on October 5, 2008, at 1:56:47
Well, Sigismund, maybe Milnacipran isn't the right AD for you. Isn't there anything that does better than slightly improve things in combination with producing some unpleasant SEs?
Ever tried Emsam? just as an example. I kind of like it, as long as I don't have too much.
Is anything particular up? anything especially bothersome or depressing lately?
Nadezda
Posted by bleauberry on October 5, 2008, at 11:47:30
In reply to Re: Milnacipran plan, posted by Sigismund on October 5, 2008, at 1:56:47
Wow, so I'm not the only one. You seem to describe me when you talk about you and milnacipran. For me, I know that when the urinary difficulty and goosebumps happen, my dose is too high. My most tolerable dose was 12.5mg in a day, taken in two divided doses of 6.25mg. That was a good compromise between the good and the bad.
The longest I was on it was 2 weeks. Looking back, I was stupid to stop. I just figured I couldn't get any higher than 12.5 and so what was the point. I mean, 50mg or 100mg was way out of reach. But, with the benefit of hindsight, I can see I was actually making decent progress at the end of those two weeks. It was subtle, not noticable on a day to day basis. But it was happening. I had become more comfortable in a crowd. More confident. I was more talkative. I was more interested in things. Making plans. The biggest thing though was my guitar. Instead of forcing myself to sit down and practice eadh day, I was actually really enjoying it and played for hours. Even though my skill level was already way higher than average, I took a fairly large step up to a new higher level in a short time. I miss that feeling. I mean, maybe my improvement was mostly evident in guitar enjoyment, but hey, it was only two weeks. That was probably just the starting hint of other things to come?
The stupid urinary stuff, which wasn't too bad at the low dose, the ocassional headaches, the slight finger tremors, the groggy withdrawal grouchy feeling at waking, and the loss of appetite...these were why I stopped. Mistake. All of those most likely would have been gone within 4 to 6 weeks, based on what others who have used milnacipran at other forums have said.
It is at the top of my list for another go. This time I had already planned to do exactly what you said...stay real low on dose, give it a lot of time, and just keep my eye on a couple months down the road, rather than tomorrow or next week.
As a sidenote just for pondering, pubmed has a few anecdotal and scientific stories of things that combine well with milnacipran. In one, a low dose of Risperdal turned partial response into full response within 4 days of adding risperdal. And 3 of the 5 patients who achieved remission had been treatment resistant up to that point. Another success story was adding low dose Zyprexa, for delusional resistant depression. In Japan it is common to combine milnacipran with ssris.
Before I ever consider those things though, I would give milnacipran a solid 8 weeks minimum, preferably 12 weeks.
The drug is doing other stuff besides Ne and 5htp. One lady who had low body temperature that did not respond to thyroid treatment, developed normal body temperature at 3 months on milnacipran. Somehow the drug had balanced some autonomic dysfunction in the adrenal/thyroid axis. She remained well even after stopping milnacipran. A few other people in fibromylagia studies said that the best pain relief kicked in at about 8 months. Yeah, 8 months. I think the clinical trials are obviously too short. In the real world, people that benefit the most from milnacipran are those that have been on it the longest.
> On day 2 I took 12.5mg (so I thought it was) for my second dose of the day and that was OK, albeit with a few vodkas.
>
> Day 3 I took 12.5mg am, thinking it would be OK. So I get this bloody awful nasty feeling, one of the many varieties that seems to come with psych drugs, not too much, not too bad, but not too good either. The very beginnings of urinary difficulty and goosebumps, hardly worth talking about except that it's relevant.
>
> So my second dose on the third day was back to around 8mg, which was better....like a mixture of something nice with something awful.
>
> So maybe my best plan is to take sufficiently little to avoid the nasty stuff, and to do it for weeks, and see how things go?
>
> I can't say it's done much for my state of mind, the contents of which are unprintable, but isn't that the usual thing?
Posted by Sigismund on October 5, 2008, at 15:07:23
In reply to Re: Milnacipran plan » Sigismund, posted by bleauberry on October 5, 2008, at 11:47:30
>I mean, 50mg or 100mg was way out of reach.
Not to speak of 200!
I don't have a clue about the HPA axis. I take a steroid nasal spray that *naturally* they will tell you is *not* absorbed (hardly at all!) by the nasal mucosa (so unlike those drugs of abuse we are so well rid of) but that instead blah blah, although my nutritional doctor thought differently.
Anyway, I remember you posting about that.Basically, I can't afford to take anything that makes me feel worse, so I am going to have to keep my dose very low.....maybe I can divide the capsule into 4s instead.
Thanks BB
Posted by Sigismund on October 5, 2008, at 15:19:42
In reply to Re: Milnacipran plan » Sigismund, posted by Nadezda on October 5, 2008, at 11:28:22
>Well, Sigismund, maybe Milnacipran isn't the right AD for you. Isn't there anything that does better than slightly improve things in combination with producing some unpleasant SEs?
>Ever tried Emsam? just as an example. I kind of like it, as long as I don't have too much.
We don't have Emsam here and if it is like a testosterone patch it would not be OK in our summer. For some reason the heat makes the irritation worse, although that is speculation. SSRIs send me into a flap just thinking about them; indeed reuptake inhibitors make me edgy.
I have taken selegeline and deprenyl, of course, and liked the effect except on my sleep, which was the limiting factor. My sleep has been poor for years and I would try agomelatine in a flash.
Tianeptine was good for almost 2 years but I started feeling weird and anxious on it......some people feel like that from the beginning, which is more understandable.
What I take to be the NE reuptake thing might be useful if I go very very slowly. It *can* make me feel more with it and less foggy, but I just have to be careful not to overdo it.
Thanks Nadia.
Posted by Sigismund on October 6, 2008, at 14:46:46
In reply to Re: Milnacipran plan » Nadezda, posted by Sigismund on October 5, 2008, at 15:19:42
I'm gonna have to regroup and try to figure out what's causing what, after an awful weekend.
For the moment I've stopped the milnacipran.
Perhaps I don't react well to higher levels of NE?
Posted by clipper40 on October 7, 2008, at 17:52:47
In reply to Re: Milnacipran plan, posted by Sigismund on October 6, 2008, at 14:46:46
So sorry to hear that. I had high hopes that this would work out for you. Hope you're feeling better now.
Posted by tealady on October 8, 2008, at 2:21:37
In reply to Milnacipran, posted by Sigismund on October 2, 2008, at 14:48:00
> I wouldn't like to start with 50mg.
>
> 6.25mg I could easily notice, the first thing being a feeling of alertness that penetrated my morning fog and reminded me not to take it on an empty stomach again.
>
> Other than that it feels tolerable, a bit like tyrosine or DLPA.
>
Agree bomber it didn't work out Sigi.
BTW have I asked you if you ghave ever been tested for thryoid antibodies. Sorry my memory is poor since the accident.. and these symptoms above do sound like hypothryoid to me.
If you have a recent TSH test and fT4 test(ideal between 17-19) called TFT) let me know as well?
Thing is normal range is NOT normal.. Mode is 1.1 for TSh anything over 1.5 is sus, over 2.0 (if you aren't on the chubby side) is definitely worth looking at TPO and Tg antibodies.. over 3.0 is most countries in the world is hypothyroid especailly with antibodies. These do come on in older age.. like over 40'ish , but especially over 60's for men.. so if you havent been tested lately.. especially considering tyrosine picks you up?
> I certainly need something, but will this be it?
>
> I don't know how people get the strength for all their med trials.
>
> It has a much longer half life than tianeptine, for what that's worth. I wonder why it has to be taken tds?
>
> They say it does not aggravate insomnia, but we shall see.
This is the end of the thread.
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