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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 3 of 3. This is the beginning of the thread.
Posted by ThinkStopThink on January 8, 2011, at 12:02:36
Hi all,
I'm on my fifth day of the Savella titration pack. I'm feeling a lot better as the first two days were hell. When Paxil first came out and I was finished with treatment, the doc said 'just stop taking it'. I was in bed for three days with total brain chaos. The first two days of Savella were worse. Imagine this: on an empty stomach with two or three hours of sleep, you consume a pint of Tequila. Then you eat a huge greasy sandwich with rancid mayo. Just when you are going to vomit and pass out, you snort a ton of methamphetamine. So, nausea, dizziness, agitation, insomnia, and a bit of paranoia thrown in for good measure. Ick.
After reading the board a bit, I've gleaned a couple of things that work for me: take the meds with food and a cup of ginger tea--that cuts out the nausea right away. And, I take the second dose at lunch with another cup of ginger tea. I don't take it any later in the day as it may keep you awake.
After five days, I'm still having that 'uncomfortable in my own skin' feeling. And massive frustration that this isn't going to work and I'll have to go through the whole weaning process and try some other drug with another slew of side effects. I'm taking Xanax to keep the agitation in check, but I'm not sure it's doing much. The whole thing is worsened by the fact that I have to move in three weeks and it seems insurmountable at the moment.
I'm keeping my fingers crossed that the side effects will keep dissipating. Anyone else successfully taking Savella? How long before the side effects were manageable?
I've had bouts of depression since before college. And have always had a existentialist view of life. I was about 900' away from the WTC on 9/11 (my building was damaged but I was physically unharmed) and am realizing the I never really dealt with all of that--short of a lot of alcohol. My mother passed away a year and a day later. And about a year and a half later I was cycling and got hit by a car. At that point I was started on Lexapro which did zip--they my NP added Wellbutrin and I stabilized. The therapist I was seeing turned out to be ethically questionable, so I stopped seeing her and for six or so years just trudged along on the Lex/WB mix. About two years ago I decided I wanted to lose the 35lbs I'd added (while going to the gym five days a week!), get my sex drive back, and 'experience life authentically again'. I learned my lesson from the Paxil and tapered off the Lex/WB over a YEAR. Still, when I stopped the 2.5mg every other day, everything went sideways. Massive anxiety, hyper vigilance, exaggerated startle response. I would ruminate over my future and the existential nature of the world so strongly that I'd get into a really black place. I tried combatting it by taking an eight week meditation based anxiety reduction class which really helped. I'm in the gym 4 or 5 days a week. And, I eat lots of fruit and vegetables and cut the coffee down to 1/2 a cup in the morning and just drink Yogi Stress Reduction tea the rest of the day. For the insomnia I've been doing 3mg of Melatonin and Yogi Bedtime tea (and tried 5-HTP and Theanine which seemed to help, but 5-HTP is a no no with Savella, so I'm just taking the Melatonin now). Still waking up at 3 or 4 some days, which makes me a wreck at work.
But I feel lucky as I've found a really good therapist who seems to ask all the right questions. His name is Richard O'Conner, and he has several good books on Amazon. So I'm hopeful about that. I just really don't want to take any of these medications--they are just such shots in the dark. I profoundly dislike the thought that I'll have to take medication for the rest of my life.
I'm trying to decide if I really just need a small maintenance dose (two of my sisters take 5/10mg of Prozac/Paxil) of something. I guess I feel like I needed a hard pinch on the cheek and the Savella felt like a football player hit me in the face with a brick.
Anyway, sorry for the jumbled thoughts; that's the state of my brain right now.
Any other Savella users care to comment?
Posted by bleauberry on January 10, 2011, at 12:38:20
In reply to Savella, AKA InHella, posted by ThinkStopThink on January 8, 2011, at 12:02:36
I just wanted to comment that after failing every med you can name off, and after failing ECT for pete's sake, Savella lifted me from the dark rapidly and was getting better by the week. (think in terms of weeks, not days, that will help).
I had to stop because the side effect of difficult or impossible urination was serious. My withdrawals lasted about 3 days and were not too intense. Mostly the nausea malaise flu-like thing.
Here's what is interesting. The dose that was working for me was 6mg 3 times a day. Think about that. The final dose....the dose that worked....the dose that was tolerable (except for the urination) was halfway between the starter dose (12.5mg) and the lowest dose (25mg). I was on 18mg.
IMO, the titration pack is extremely aggressive and the doses are usually prescribed too high. If I can respond to such a tiny dose....less than the smallest pill....then someone else can too. I'm not the only one.
I am obviously well practiced at making my own custom doses with either capsules or tabs. Almost 2 decades of titrations and weanings have taught me that. And also taught me that low doses can work fine....they just take longer. There are a couple pubmed studies, one of them on milnacipran, that confirmed that hunch for me. My previous Lyme doctor saw that pattern a lot....regular doses were overdoses....extremely small doses worked.
They don't mention this often, but I think it is extremely important....Savella half life is only 8 hours. It is half gone in 8 hours. A single dose per day doesn't work. Two doses per day may not be enough. To keep a steady blood level requires 3 doses per day.
I think the best game plan is to take whatever dose does not cause difficulty...no matter how small....and increase it only by tolerable amounts and only when an increase is tolerable. In other words, let the body itself guide the journey rather than some preconceived plan on paper that has no clue of your personal chemistry.
Keep the doses low and only increase them as your body gives the go ahead. Take whatever your total daily dose is in 3 divided portions throughout the day.
Every single person I know of who followed the titration pack instructions had to bail out. It's too much too fast IMO.
Posted by ThinkStopThink on January 12, 2011, at 11:11:31
In reply to Re: Savella, AKA InHella, posted by bleauberry on January 10, 2011, at 12:38:20
Hi bleauberry,
Thanks for the post. Your posts were the inspiration to stick it out as long as a could. But after eight days, I had to stop Savella. I just couldn't function with the super foggy brain, the spaciness, and worst of all, popping wide awake at 2am. After several days of nowhere near enough sleep, I just couldn't handle it. Since I have pretty regular anxiety, the side effect of making me wired wasn't pretty either. It also made me ever so slightly paranoid--not sure if that was the lack of sleep or the med. Your idea of many smaller doses over a longer period is the solution, but I've got to move my household in two weeks, and I don't have time to experiment.
Thanks again.
> I just wanted to comment that after failing every med you can name off, and after failing ECT for pete's sake, Savella lifted me from the dark rapidly and was getting better by the week. (think in terms of weeks, not days, that will help).
>
> I had to stop because the side effect of difficult or impossible urination was serious. My withdrawals lasted about 3 days and were not too intense. Mostly the nausea malaise flu-like thing.
>
> Here's what is interesting. The dose that was working for me was 6mg 3 times a day. Think about that. The final dose....the dose that worked....the dose that was tolerable (except for the urination) was halfway between the starter dose (12.5mg) and the lowest dose (25mg). I was on 18mg.
>
> IMO, the titration pack is extremely aggressive and the doses are usually prescribed too high. If I can respond to such a tiny dose....less than the smallest pill....then someone else can too. I'm not the only one.
>
> I am obviously well practiced at making my own custom doses with either capsules or tabs. Almost 2 decades of titrations and weanings have taught me that. And also taught me that low doses can work fine....they just take longer. There are a couple pubmed studies, one of them on milnacipran, that confirmed that hunch for me. My previous Lyme doctor saw that pattern a lot....regular doses were overdoses....extremely small doses worked.
>
> They don't mention this often, but I think it is extremely important....Savella half life is only 8 hours. It is half gone in 8 hours. A single dose per day doesn't work. Two doses per day may not be enough. To keep a steady blood level requires 3 doses per day.
>
> I think the best game plan is to take whatever dose does not cause difficulty...no matter how small....and increase it only by tolerable amounts and only when an increase is tolerable. In other words, let the body itself guide the journey rather than some preconceived plan on paper that has no clue of your personal chemistry.
>
> Keep the doses low and only increase them as your body gives the go ahead. Take whatever your total daily dose is in 3 divided portions throughout the day.
>
> Every single person I know of who followed the titration pack instructions had to bail out. It's too much too fast IMO.
This is the end of the thread.
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