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Dr. Bob is Robert Hsiung, MD,
[email protected]Shown: posts 1 to 22 of 22. This is the beginning of the thread.
Posted by floatingbridge on December 28, 2009, at 15:26:40
I know there has been lots of posting about this. Forgive me; I'm miserable.
;-)Would Savella be worth a shot--I have somatic symptoms w/ my depression (or what ever it is I 'have')? I've mostly read about its failures.
Anxiety that blocks love and joy
physical tension and back aches from base to skull
fatigueI want to know as much as I can before I go to the clinic in Jan.
any two cents worth is welcome,
fb
Posted by Sigismund on December 28, 2009, at 16:19:50
In reply to savella question, posted by floatingbridge on December 28, 2009, at 15:26:40
My experience with Savella was a nice calmness (Serotonin?) with an ants-under-the-skin type feeling (NE?).
I couldn't take much of it either. 12.5/d, if I recall correctly.
Posted by janejane on December 28, 2009, at 16:22:47
In reply to savella question, posted by floatingbridge on December 28, 2009, at 15:26:40
No personal experience, but since it's used with fibromyalgia, seems like it would be a good choice for relieving pain.
Posted by Phillipa on December 28, 2009, at 16:38:49
In reply to Re: savella question » floatingbridge, posted by janejane on December 28, 2009, at 16:22:47
That makes a lot of sense about the pain relief somatic or psysiological? Phillipa
Posted by bleauberry on December 28, 2009, at 17:20:12
In reply to savella question, posted by floatingbridge on December 28, 2009, at 15:26:40
As I've said several times in recent months, I am a fan of Savella. However, that comes with some stipulations.
I do believe recommended doses are too high...at least as a guideline they are. For example the starter pack has 12.5mg and 25mg pills in it, ramping up very rapidly from 12.5mg once a day to 100mg (50mg twice a day). Why not just stay at 12.5mg and see what happens? Maybe it's just me, but I totally disagree with the whole predetermined schedule thing. They kind of have to do that in a clinical trial, but in the real world I think the rules have to change. How do we know that some of the dropouts and failures in those clinical trials weren't because the doses were ramped up too fast or too high?
My best dose, considering the profound urinary side effects I had balanced with therapeutic benefit, was 6.25mg three times a day. At just two weeks I was a ton better than before. This after ECT failed. That says something.
Trials have shown that low doses can work as good as high doses, but...they take longer. They'll still get you there, just not as fast.
My other stipulation with Savella is that it is best in a combination, not as monotherapy. I see it mixing well with any SSRI or TCA or antipsychotic. As clinical case studies at pubmed have shown it does. As Japan's practice shows it does.
All that said, yeah, Savella is a contender for your symptoms. But so is Cymbalta or Nortriptyline or LDN or Advil/Tylenol combo. I am beginning to wonder if the combination of nortriptyline and savella might be real good, as nortriptyline could block some of the pressor response of the peripheral effects of savella.
I can't avoid saying, when there is a lot of pain present, one almost has to wonder where does it come from? No one really knows, but we can put our finger on three basic categories. 1-Inflammation; 2-infection; 3-low endorphins. I think 1 and 2 go together. Steps should be taken to rule those in or out. I've talked about that many times here. Endorphins can be raised significantly (3 fold) with LDN and/or low dose of D-phenylalanine or DL-phenylalanine. If the pain is accompanied by feelings of doom and emotional sensitivity, then according to Julia Ross that is a low serotonin and low endorphin symptom.
Posted by kaylabear on December 28, 2009, at 18:20:43
In reply to savella question, posted by floatingbridge on December 28, 2009, at 15:26:40
Savella would be a good one to try since it acts so differently than many of the others.
Just to let you know-Effexor caused extreme muscle tension in my back/neck which led to pain 24/7. Of course, anxiety could cause this too. But how long have you had those particular somatic effects? Could that be a side effect from the meds you take?
Norepinephrine can cause pain:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC65524/
Maybe a one hour body massage might be the ideal thing for you at the moment! I strongly believe in regular massages and wish I could afford it. Massage also helps for fatigue. Anytime I have received one in the past I felt the energy flowing through my body afterwards-probably more from circulation-but it sure wakes you up! Also, Reiki will unblock trapped energy. I could not believe how 1 reiki session affected me-I saw all kinds of colors, with my eyes closed, by the end of the session.
This stuff is so unobtainable for those who cant afford it. Hope its an option for you.
Hope you feel better soon
Posted by bleauberry on December 28, 2009, at 18:36:02
In reply to Re: savella question, posted by kaylabear on December 28, 2009, at 18:20:43
Well, a little off-topic for this thread, but in the book Healing Lyme which focuses on herbal treatments to add to antibiotics or use as stand-alone protocols to replace them, the author says in his clinical experience the single best thing for depression, fatigue, and pain that he has seen over the years...even better than pharmaceuticals...is weekly Swedish massage. You are right though, that can cost some money. I think it is, what, $45 or so for an hour each week?
His second best success is with Siberian Ginseng tincture, not capsules, but that results don't begin for a couple months and really take 6 months.
And yes, norepinephrine can actually cause pain. I believe it is the balanced serotonin/norepinephrine that helps pain, not a focus on either one alone, and that this ratio will vary from person to person. Therefore no single drug will have the correct ratio of NE/5ht. That's when a combo like Nortriptyline/Zoloft looks real attractive, so one can manipulate the balance.
I also think the opioid peptides are big players, often overlooked. Easily boosted with LDN and/or D-phenylalanine. Side benefits are less brain fog and more energy and improvement of depression.
I question whether the pain in this particular thread is side effects. It might be direct effects, as in inflammation, infection, deficient opioids. It might be side effects, but it might not.
Anyway, just wanted to comment on the massage thing. The author also said it is the most difficult thing to convince patients to do because they are so skeptical it would work.
> Savella would be a good one to try since it acts so differently than many of the others.
>
> Just to let you know-Effexor caused extreme muscle tension in my back/neck which led to pain 24/7. Of course, anxiety could cause this too. But how long have you had those particular somatic effects? Could that be a side effect from the meds you take?
>
> Norepinephrine can cause pain:
>
> http://www.ncbi.nlm.nih.gov/pmc/articles/PMC65524/
>
> Maybe a one hour body massage might be the ideal thing for you at the moment! I strongly believe in regular massages and wish I could afford it. Massage also helps for fatigue. Anytime I have received one in the past I felt the energy flowing through my body afterwards-probably more from circulation-but it sure wakes you up! Also, Reiki will unblock trapped energy. I could not believe how 1 reiki session affected me-I saw all kinds of colors, with my eyes closed, by the end of the session.
>
> This stuff is so unobtainable for those who cant afford it. Hope its an option for you.
>
> Hope you feel better soon
>
Posted by floatingbridge on December 28, 2009, at 22:01:06
In reply to Re: savella question » floatingbridge, posted by Sigismund on December 28, 2009, at 16:19:50
Sigi, may I ask what symptoms you wanted to address w/ Savella? Was it taken with other meds?
Stablon looks good on paper, but it's not available in the states. I wonder if a U.S. doc would work w/ a mail order drug? Hmmmm.
Thanks, and hope you are well,
fb
Posted by Sigismund on December 28, 2009, at 23:09:37
In reply to Re: savella questionooo » Sigismund, posted by floatingbridge on December 28, 2009, at 22:01:06
Hi Fb
>Sigi, may I ask what symptoms you wanted to address w/ Savella?
Just my depression or whatever you call it. I took it on its own, except for a little Valium.
>Stablon looks good on paper, but it's not available in the states. I wonder if a U.S. doc would work w/ a mail order drug?
Mine wrote me a script for agomelatine (not available here, of course), but he's rather a strange doctor....he thinks the world is run by psychopaths (like even more than I do!). He'll write prescriptions, but we are both agreed that the whole thing sucks and (as he said) 'what you want is an AD that feels like amphetamine or cocaine', which is completely out of the question in the British Commonwealth where ADHD is unheard of.
I seem to have survived another festive season.
Nice to see you.
Posted by floatingbridge on December 30, 2009, at 10:49:13
In reply to Re: savella question, posted by bleauberry on December 28, 2009, at 18:36:02
BB, thanks for both your posts here--good info for me to consider and look further into.
My last trial was w/ an add on of strattera that made me feel just awful--foggy headed, headache. I didn't know if it was the extra seritonin (the dumb, trippy feeling I had on zoloft) or the extra ne, or...?
Yes, for me, lower dose seems to be more effective....
Will be adding bodywork as you and
Kaylanear suggested--I'll find some way to make room in my budget--which
health costs take more and more of. Oh well.Some herbs you mention are already on board--ginseng and others in a formula from my accupunctrist.
Low endorphins. Hmmmm.
Thanks Bleauberry,
fb
Posted by floatingbridge on December 30, 2009, at 10:53:29
In reply to Re: savella question, posted by kaylabear on December 28, 2009, at 18:20:43
Kaylabear, thanks for your post and the link--I haven't been able to get to it, but I with.
Hugs,
fb
Posted by floatingbridge on December 30, 2009, at 11:22:42
In reply to Re: savella question, posted by floatingbridge on December 30, 2009, at 10:53:29
Posted by bleauberry on December 30, 2009, at 17:13:30
In reply to Re: savella question » bleauberry, posted by floatingbridge on December 30, 2009, at 10:49:13
If it's all about "chemical imbalance", then I do believe "too much" NE is not a good thing. It can feel like yuck and muck. But so can too much serotonin, dopamine, or gaba.
It's all about balance. I guess we all go through our own personal experiences to get a clue of what our imbalances are and what doses it takes to correct them.
I tried Reboxetine once and it was just awful. God I felt so depressed, so dark, so deep, so fast, on that stuff.
I had the same fear before taking Savella. I expected it to hammer me bad. But I had to at least rule it in or out. Imagine my surprise when it actually felt good. The trick then was to find the right dose, which for me was even less than the recommended starting dose.
> BB, thanks for both your posts here--good info for me to consider and look further into.
>
> My last trial was w/ an add on of strattera that made me feel just awful--foggy headed, headache. I didn't know if it was the extra seritonin (the dumb, trippy feeling I had on zoloft) or the extra ne, or...?
>
> Yes, for me, lower dose seems to be more effective....
>
> Will be adding bodywork as you and
> Kaylanear suggested--I'll find some way to make room in my budget--which
> health costs take more and more of. Oh well.
>
> Some herbs you mention are already on board--ginseng and others in a formula from my accupunctrist.
>
> Low endorphins. Hmmmm.
>
> Thanks Bleauberry,
>
> fb
>
>
Posted by floatingbridge on December 30, 2009, at 18:44:14
In reply to Re: savella question » floatingbridge, posted by bleauberry on December 30, 2009, at 17:13:30
Yes, I'm finding that my best response for psych meds is lower than standard dose--my pdoc is skeptical--so hearing that confirmed by your's and others' experience is reassuring. Listening to my body is a bit new, and scarey, after a history of dydregulation. However, I can't walk around feeling 'drugged'.
fb
Posted by floatingbridge on December 31, 2009, at 1:33:45
In reply to Re: savella question, posted by kaylabear on December 28, 2009, at 18:20:43
KB,
Arrgh! Once again I lost a lengthy reply to you. Drat this phone!
Well, finally got to your link, and there is more connection there to my symptomology than I'll comment on here.
I've got some Googling ahead. Thanks for your caring and astuteness. I'm so glad you're on babble.
hugs,
fb
Posted by ihatedrugs on December 31, 2009, at 3:02:54
In reply to Re: savella question, posted by floatingbridge on December 30, 2009, at 18:44:14
I tried Savella early this summer and it did not work for me. I gave me energy but I was in a horrible angry mood most of the time. But as we've all learned in this forum, everyone is so different and if you don't feel well give it a try. It may very well be your miracle New Year drug!
Happy New Year!
ihatedrugs
Posted by bleauberry on December 31, 2009, at 11:44:03
In reply to Re: savella question » floatingbridge, posted by ihatedrugs on December 31, 2009, at 3:02:54
Ah yes, it was ihatedrugs I was thinking of. The one that got some benefit from Savella but was in a rage all the time. Couldn't remember who that was.
Certainly no drug will work for everyone. I think generally Savella will show itself in 5 or 10 years to be more reliable than others. But for now, I think there are two very common mistakes made with Savella.
1. Doses too high. There is even a case report of a lady in remission with just 20mg per day. I failed ECT and exotic combinations, but felt improvement on mere 6.25mg bits? Shooting for 50mg to 200mg as recommended, I believe increases the risk of inefficacy or side effects by overshooting the actual needed amount.
2. I have read responses from several people who were actually in the clinical trials. The general message coming from them was that while Savella can show some benefits in the early days or weeks, it isn't really until 3 months 9 months later that the true goodness comes to life.
Their theories are that it rebalances the HPA system and autonomic systems gradually over time. The ones who had the fullest response stayed the course. I think going easy on doses helps increase the potential for that to happen without complications or early termination.
> I tried Savella early this summer and it did not work for me. I gave me energy but I was in a horrible angry mood most of the time. But as we've all learned in this forum, everyone is so different and if you don't feel well give it a try. It may very well be your miracle New Year drug!
> Happy New Year!
> ihatedrugs
Posted by mtdewcmu on December 31, 2009, at 20:07:15
In reply to savella question, posted by floatingbridge on December 28, 2009, at 15:26:40
You are having typical symptoms of depression and anxiety. So, any effective antidepressant would help. Why not try Remeron? It's sedating side effect may lessen your anxiety in the begining, and it may help you get better sleep. And it's a very effective AD.
Posted by floatingbridge on December 31, 2009, at 20:32:14
In reply to Re: savella question, posted by mtdewcmu on December 31, 2009, at 20:07:15
Hi! Well, there does seem to be a flurry of success lately w/ remeron which is very encouraging. A friend's long-term successful cocktail includes it. I'll look into it--thank you--and I'm very pleased and encouraged by your own experience.
best to you,
fb
Posted by mtdewcmu on December 31, 2009, at 21:37:37
In reply to Re: savella question » mtdewcmu, posted by floatingbridge on December 31, 2009, at 20:32:14
> Hi! Well, there does seem to be a flurry of success lately w/ remeron which is very encouraging. A friend's long-term successful cocktail includes it. I'll look into it--thank you--and I'm very pleased and encouraged by your own experience.
>
> best to you,
>
> fbIt's a bit early to tell how my story is going to play out. I've only been on the paxil for one day. But I have no intention of going off the Remeron. I have yet to experience it by itself, without other meds confusing things. But, the only times I have really felt good during this tortuous (and torturous) journey have been on Remeron.
It's remarkable how it has seemed to abolish the GI side effects of Paxil; but we will see if this continues as the Paxil builds up in my system.
I will keep you guys posted.
Posted by floatingbridge on December 31, 2009, at 22:55:44
In reply to Re: savella question, posted by mtdewcmu on December 31, 2009, at 21:37:37
Yes, I've read that on it's own remeron isn't very effective. That's just what I've read. I'm glad your day has been good--
I understand about celebrating prematurely, so my fingers are crossed for you and I'm knocking on wood. But seems you're off to a great start. :-)yay!
fb
Posted by Phillipa on January 1, 2010, at 19:15:46
In reply to Re: savella question » mtdewcmu, posted by floatingbridge on December 31, 2009, at 22:55:44
I took remeron with luvox higher dose and benzos and the dose was l5mg why didn't it make me tired? Took for four weeks. No weight gain either. Phillipa
This is the end of the thread.
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