Khaldanis: Savella / milnacipran severe withdrawal

[Khaldanis]

Hello,

I'm dealing with progressively worse headaches and numbness and what i'm guessing is muscle rigidity. 

I was prescribed Savella because I had seen a rheumatologist who prescribed this medicine for me with the tentative diagnosis of fibromyalgia.
I got up to 22.5 mg quickly and started having distressing symptoms of numbness crawling out like a web from between my shoulders blades that, muscle twitching, short temper etc, and it was not helping my condition at all so I decided to taper off by skipping doses this lead to headaches so I talked to a Psychiatrist who helped me out by telling me I should switch to Remeron. within a few days I got severe muscle weekness and terrible headaches pain in muscles of left arm and leg, quickly discontinued and restarted Savella at 12.5mg and did a quick taper off to nothing over the course of a few weeks. 

starting July 15, Savella quick taper and start Remeron on 16th for 1 week then discontinued after symptoms kept getting worse.
July 21st introduced 6mg symptoms partially resolved and continue on another quick taper with this till around aug10 and quit.

feeling ok but not perfect. I was dizzy, headache that is killing me ability to function at work, also left arm and left leg discomfort with waking up to whichever side I am sleeping going completely numb.
Some other details that are there but not bothering me is restless legs and anxiety/agitation knowing that I might be stuck like this for year or more scares me dearly. 

Should I ask to reinstate Savella so I can try and get relief from withdrawel? or Should I continue without medicine? 

[Altostrata]

Welcome, @Khaldanis

 

16 hours ago, Khaldanis said:

July 21st introduced 6mg symptoms partially resolved and continue on another quick taper with this till around aug10 and quit.

 

As you have experienced, low-dose reinstatement can relieve symptoms. However, you need to stay on the low dose for months to let your nervous system stabilize before tapering again, very gradually.

 

If you find your current withdrawal symptoms to be intolerable, I would reinstate 3mg Savella, let your nervous system settle down, and taper off by tiny amounts in some number of months.

 

Using a liquid preparation of Savella probably would be the best way to measure low-dose reinstatement and taper off, see Tips for tapering off milnacipran (Savella)

 

 

To help us out, follow these instructions Please summarize your drug and withdrawal history in your signature You may need to use a computer to do this.

[Khaldanis]

what is your recommended timeline for seeing if symptoms improve? and should I ever climb to a higher dose to see if symptoms improve?

Also thank you so much for this website!

[Altostrata]

You've been off Savella for more than 2 months with worsening symptoms, withdrawal probably isn't going to go away soon. If your current symptoms are intolerable, you may wish to reinstate sooner rather than later. It's your decision.

 

You probably would want to stabilize on a very low dose for several months or longer before tapering off. You may not need more than 3mg as a reinstatement. It depends on what effect 3mg has, a little improvement is a good sign.

 

Please let us know how you're doing.

[Khaldanis]

Well, I decided not to reinstate, I was in fear that one or both of the drugs was what I having adverse reaction to, and was unsure what the best course of action was. Dr and Psych were clueless even visited a Neurologist... 
I know this is my choice....but I figured things would clear up faster than they are....I hope this has not further pushed my disease away from me being able to heal but here we are.

I suffered until November and went to ER for headaches that were getting so bad that I could not operate anymore, after two weeks on antibiotics and Claritin I finally started to see progress.
started going to chiro hoping he can help with extreme muscle tension that is hurting the headaches ..not sure about this but it's at least placebo for now.
At around nov 17th, headache lifted, muscles on head remained tight.
Went camping with family and was completely unable to operate but pushed through where I could. That following Monday my dizziness lifted, which from my observation every time I'm getting into a new situation the dizziness increases like I need to retrain my body to understand the world or that it is simply too overwhelming of an experience, but then I heal from the experience and can better handle that kind of stress. The dizziness is under control it seems for now.
went on a trip over thanksgiving and The discomfort lifted in arms and legs up until Nov 28th, when I came home from visiting family and immediately started up again.
I'm guessing that this is what windows and waves is all about?
 

[ChessieCat]

34 minutes ago, Khaldanis said:

I'm guessing that this is what windows and waves is all about?

 

Yes.

[Khaldanis]

I'm finding that I only get about 2-3 sometimes almost 4 hours of sleep each night. No trouble falling asleep but keep waking up and not going back to it. Hopefully I can get that sleep trending up before I have a hard crash.

I tried melatonin and valerian root, but valerian I think was stimulating my anxiety. melatonin works to make me sleep but not stay asleep, has anyone try delayed release melatonin?

[Khaldanis]

unfortunately since the 1st my headaches have progressively gotten worse and worse, and I'm not sleeping....not sure what to do now I was expecting to have gotten better after only a few months off the drug. Wish this sight ran a time machine to help us all out.

[Khaldanis]

@Altostrata So I'm not getting better with these headaches, my Neuro is suggesting I try low-dose amitriptyline, 10 to 30 mg at bedtime, or propranolol twice daily. 
At this point I'm terrified to try anything especially knowing that this has got to be protracted withdrawal, but I'm literally sliding back to where I was back in October. 

[Khaldanis]

Well, I deeply regret taking this medicine now....I never would have guessed that I would be suffering for this long from a drug that seemed to barely be doing anything for me than give me more symptoms. I'm now realizing this more of a kindling effect from trialing antidepressants many times over the years and improperly coming off of them......Trying my best to not kill myself now

current symptoms for documenting what is going on currently on this new year
-bouts of extreme anxiety, I turn to Yoga, Pilates and progressive relaxation to help this.
-barely able to hold conversations with people now
-Dizzyness
-light sensitivity 
-left leg pain, calf muscle and arch of foot
-left forearm discomfort
-tinnitus
-bladder/lower left abdominal pain (why I trialed this med in the first place, drinking only water and doing Pilates has helped this pain more than anything....if only I had know before this....

taking magnesium glycinate 200mg and omega 3 1280mg

[Khaldanis]

and headache, I guess the sensation on my head is and arms/legs is more numbness than anything else. Really hope like everyone else on here this this will pass and I can live the beautiful life we have been granted.

[Khaldanis]

So I did not no what to do. I had completely stopped sleeping and was going crazy. I was in the mental hospital for two weeks where yes, you guys are right they really do not know the damage that these drugs cause and are not concerned whatsoever and will instead gaslight you and dismiss all of your concerns. I'm currently on Seroquel 50mg....it has  started to cause my arm pain to increase to an extreme and is spreading. I can now sleep but I'm worried that this is only making my condition more dangerous....