anyone trying the newest med…

Ramped up to the 50mg 2x daily and am okay. Felt wonky at first, 2nd day I have felt a bit manic in the morning (take it with wellbutrin…apparently taking wellbutrin at night was contributing to not sleeping so I had to switch to mornings).

Side effects:
hot flashes
chills
bit manic
slight nausea
some extra tingling (tolerable)
clean house (LOL)
MUCH better mood
and a headache soon after I take it. But it doesnt stick around.
Now it also raised blood pressure and heart rate. I have only noticed this occasionally. Not a constant thing. Wondering if it will be a problem at the gym when I try to get back there. With raised BP and HR comes heavy breathing. Wish it counted as a cardio workout in a good way.
Has also lessened my appetite. Nothing sounds good and I have to remember to eat something or my low blood sugar makes me feel crummy.

I think I am going to stick with this. It hasnt taken away the pain 100%, but enough that I can function more and do a bit more on my own. Definitely had more good days recently than bad ones. OH and a huge one, I have slept so incredibly well at night since i started it!! Out like a light and feel rested and refreshed when I wake up. Talk about a huge relief! Seeing dawn and watching the late night line up was getting pretty lonely. Plus I didn’t sleep all day, I was only getting about 4-5 hours of sleep and walking around in a zombie state. Partially pain, partially taking meds at the wrong time, and mostly just plain miserable.

It is worth a try to see if you can handle it if you have been unable to tolerate anything else. And that is saying a lot because I have had so much trouble with meds and honestly prefer not to bother with them and their side effects. But this has given me enough relief that I have been able to interact and spend quality time with my kids, clean my own house more often, feel more alive, and am so happy with the pain level going down. A dull roar I can tolerate.

edited to add—have not been as short of breath either!! JUST realized that. It was becoming a bit scary for me, but since starting this I have not had as severe or as many episodes.

Not certain how long i have been on the Savella, but have had two appts to discuss things with the dr. He is keep track of every little side effect either good or bad. I noticed break thru pain is awful! Meaning I can “push” myself and end up really really paying for it. New things to learn, still have to remember I have limitations regardless of pain tolerance or not.

Still get hot flashes and sweating
headache after taking it has gone away
nausea after taking it has gone away
lost 6 pounds so far and look forward to more once I get back to the gym
MUCH happier. I told hubby that I think it is that my “I dont care” has kicked into overdrive. Not in a bad way, just not worrying over as much as I was.
Sleeping is still okay. Had a very interesting night when I took less than my normal dose of xanax. SERIOUSLY bizarre dreams! Went thru the entire emotional spectrum that night. Woke up upset and agitated over the whole thing.
No napping needed unless I am silly and over do it then I just head to bed earlier.

I have a new diagnosis added to my list…fibro. Pain points all check out as do other symptoms. Dr said too many pain areas to be just GBS he thought, and since there can be cross overs with neuro/auto immune issues he checked me out for it. The Savella helps and I have mentioned it to my friend who has fibro as well. I will struggle thru the allergy problems I have gotten since GBS came into my life. No steroidal anything for me or my family threatened to move out! Anyhow, BP is normal and heart rate too unless I push it then it is quick to react. Another thing to learn and tuck away for future reference.

That is about it for now. Off to straighten up the house and get ready for a photo shoot with a friend. Ooo did a portrait of another friend and he and his family loved it so much, they asked me to do some of their 19 year old son! Told em in lieu of payment, pay for printing and spread my name around.

Happy Easter to those who celebrate and God Bless!

Lori

update….

Break thru pain is very painful!! Learning very quickly NOT to push myself no matter what I might feel like. It is a band aid plain and simple.

I started having horrible nightmares, so real I would physically and emotionally react to them on “this side”. I can only assume this is the point the dr talked about when the meds get thru the blood brain barrier and get to doing their real work. Um okay…dont recall nightmares on the list of side effects. I could take a bit more xanax and it would be okay. But, on the nights I didn’t do that, and depending on how small the xanax dose was, resulted in [B]intense[/B] dreams I can not even describe. So I finally called it in, the doctor called me back personally instead of his nurse. We talked and he wanted me to stop the wellbutrin cold turkey…OMGosh!! He warned me of withdrawals and said if it was too much, to come in. Said it could be the piggyback effect of the Savella and Wellbutrin. Disappointed because mood wise I was doing so well (minus the over exaggerated PMS symptoms…we wont talk about that) and life seemed to be shiny and new again. I was okayed to up the dose of xanax for a while and we are aiming for a lower dose in the near future. Fine whatever.

They say withdrawals can last a week to 8 weeks depending on some factors. And the withdrawals can be nasty. Nice…just what I needed. Hopefully the Savella fills in and everything is okay. If not, I am definitely calling for an appt!

I am so sorry to hear about Mason. I was really hoping things had turned around for the better with him. I will look you up on facebook. Mason is in my prayers!

Savella is fine as long as I do not over do things, or am not experiencing my monthly. If it raises pain tolerance, let me tell you, I can not imagine what I would feel like if I was not on the medication!! This month has particularly difficult with stress, 2 monthlies, and more stress. At a couple of points I honestly thought I was relapsing. I found out it can be increased to 200mg a day, BUT that comes with increased risks. Cardio and liver. I haven’t had too much of the cardio issues—-racing heart, high blood pressure etc lately. And liver seems fine, no pain, no yellowing. Do I want to increase these risks or do I just deal? The liver thing scares me because of an increased risk of autoimmune issues anyhow. Of course the cardio scares me for obvious reasons. I have an appt on the 9th of june so I will discuss all of this with the dr and see what he has to say.
I am also going to discuss going off of singulair after doing some research on it. I take it for shortness of breath that I feel is GBS related and it has helped. BUT the side effects have exasperated what I am already dealing with….increased depression, anxiety, mood swings, digestive problems, weight gain, tingling in extremities (as if I need more of that!!), and others. I want to see if things change for the better if I am off of it. I am just concerned about the shortness of breath that comes and goes. Never constant, and also the very tight feeling I get in my chest—tight band squeezing me—has been better ON the medication. I will ask about a rescue inhaler for those such moments since it is not constant. I have primatene mist on hand since before starting singulair and it helped except it is a major stimulant!! I dont deal well with that. ugh

Anyhow still deal with the excess sweating and hot flashes (usually happen within a hour of taking a dose but summer is coming so that should prove interesting!), a bit of mania but not nearly as bad as it was when I first started the Savella.
Pain is still more or less under control. The pain I do experience is worse than I think it was without the medication, but hard to remember such things. Remember it is only a band aid. except for this month, I have had more good days on average than bad. Not good enough that I can fully function at an outside job, but enough to spend time with the kids and get a few extra things done around the house on my own. Less time in bed too.
Nausea and headache within an hour of taking it but these are fairly quick to go away. If a migraine hits, it hits HARD though (as I found out last night and am still feeling the effects).
DRINK WATER!! Lots and lots of water. It dries you out and you may not realize you are even thirsty till you are REALLY REALLY thirsty. Plus fiber or something. Trust me on this one!
It also does decrease your appetite. I am still not eating nearly as often as I should, and prefer a bowl of cereal to a real meal. Be careful of sweets, once you start it is hard to stop! If I keep healthy stuff in the house, I gravitate towards that so i keep snacks in the house to a bare minimum. (kids dont like that LOL!)

anyhow, it is worth a try. Do your research and that way you can make an educated choice. Oh I will also be getting a full blood panel done at my next appt to make sure liver, kidneys and everything is okay.

For anyone that wants to give it a shot, I really hope it works for you and everything turns out okay. I have to say I am surprised with the positive results and bummed by the negative.

[QUOTE=Drummer]I am on Lyrica and Cymbalta, and was wondering if this, Savella, could possibley help my pain ? Thanks to the ones who answer and I am praying we all have better days ahead .

Drummer[/QUOTE]

Lyrica and Cymbalta are almost exactly the same thing. They act on chemicals in the brain a bit differently but are very closely related. Savella works more on norepinephrine instead of working on the serotonin. Enough so that it makes it different than the other two and even neurontin. I could not handle Cymbalta so the dr did not even try lyrica on me. We narrowed it down to the norepinephrine/serotonin difference between the meds I have tried. Even the anti depressants. Apparently for me, the serotonin ones are not for me.

My opinion, ask about it, research it, give a trial pack a try. I noticed a difference within a day or so. Yes, that quickly even at a low dose! You can increase to 200 mg a day if needed….just remember what risks are increased okay? Research 🙂 and ask lots of questions. If you choose to change, let us know. I would love to hear that it worked for you!