Well, you are completely right...it's hard to know how each medication is going to react with your body chemistry. Gabapentin and Neurontin are the same med- you are correct. Neurontin is the brand name. I found Gabapentin and Lyrica to be very similar, but Lyrica is stronger at lower doses.
I have tried Cymbalta as well and didn't like it. I had trouble with my GI system. I had diarrhea the whole time I was on it and I became incredibly depressed. I too am very anti-Savella because of some of the negative stories I've heard, because I know my body and the people who had negative responses tended to have things in common with me. I mean in terms of how they reacted to other meds.
I have heard really wonderful stories too about Savella- don't get me wrong. *With your heart condition though I would be a bit leary of Savella.* I have heart palpitations and take Potassium daily as well, so that is my main qualm with Savella. I also have had bouts of atrial fibrillation.
I know that you have CFS. Anti- Seizure meds tend to work well with the FM and CFS diseases in my opinion because they target the nervous system, but Lyrica and Neurontin (Gabapentin) can make you drowsy. Most of the anti-seizure meds can.
I take Topamax, which is another much stronger anti-seizure med used for migraines that helps with pain too at higher doses. My doctor told me I would become sleepy on it, but it has actually given me energy, which I LOVE. I have noticed that it has acted this way with others too. If you do try Lyrica or Neurontin and they don't work for you, you could always ask about Topamax. I have TONS of info about it and I wouldn't mind sharing my experiences with you. Feel free to PM me to if that works better for you. Take care.
I've been taking Lyrica and it has given me back my life. I was very pleased with my doctor's approach of starting with a very low dosage and moving up when I feel it is no longer working. I started with 75 mg a day. My pharmacist told me to take it an hour before bed to help me avoid the sedated feeling. For the first week I did feel a bit sedated but then it went away. After a week and a half I moved to 150 mg and took both at night. A month later I moved to 225 mg with taking one 75 mg in the morning and the 225 at night. I do not feel any fatigue (just for the first day or two after increasing dosage) and actually have more energy. Everyone will have a different reaction but it is important to give it a bit of time to see if the side effects go away once you are used to it.
Dusty and Trudie,
I take Klonopin now for my legs and it is an anti-seisure med that I have read works for Fibro also; however, it makes me sleep, which I love, but doesn't work well on any of the pains I have or the weird electrical impulses that I keep getting in my body. Those are really strange and the pain I have in my shoulder and neck is a burning pain.
I know that Trudie, you really like the Lyrica. I think I should probably put all of these meds into the med interaction checker and see how they react together. I just want to be informed because it seems to me that sometimes the doctors just prescribe w/o really looking at what you already take, you know?
and Dusty, you are always a wealth of information. I will PM you! I have my nuclear bone scan scheduled finally and I see the rheumy next week, so I should get some answers!!
Thank you both!!
I am 26, i have been struggling with CFS and Fibro for six years (officially) though all my symptoms began when i was 14. I know how frustrating it can be. I have taken Neurontin but i didn't find it to be helpful for me. I noticed no difference in symptoms for the 6 mths i took it.
I took Cymbalta for 4 yrs and finally just got off of it. While Cymbalta did help manage both my depression and muscle pain, the side effects were what i hated about it. I never had digestion problems from it, but my stomach hurt constantly and my appetite disappeared. Eating became a chore and if i got distracted with school/work responsibilities, i would forget to eat, sometimes for 2 days. I also developed hyperhydrosis and always had a chemical/metalic taste in my mouth. it took me 11 months to get off Cymbalta due to the severe withdrawl symptoms - dizziness, "electric shock" feelings in my head, nausea and vomiting, double vision- the list for me went on and on.
I started taking Savella about 2 months ago and I REALLy love it! My mother also has FMS and also has loved Savella. She tried it before i did and once she had such success with it, i finally had the resove to get off the Cymbalta. I've never taken Lyrica but i have a friend who takes Lyrica as pain management for Deep Vein Thrombosis and he tells me it works very well for him.
For the CFS i have taken Adderall XR for almost 6 years and it is the only thing that has worked for me. i take a rediculous amout but my doc says its safe and its the only thing that has allowed me to be normal-ish. I don't know how amphetamine would affect your heart condition though, so it may not be a good choice for you.
hopefully that helps, at least to have another perspective. feel free to ask me any other questions you think i could help with. Good luck and i hope you find something that works for you soon!
Thank you for responding. It shows how all the meds affect everyone differently. I am trying to make aninformed decision before I go to my appt. Wed but this is hard because now you and your mom love the Savella! I am more confused I think than informed but I appreciate everyone's input so much. It does help.
I don't know what Adderall XR is. I will have to look that up. Yes, not sure with my heart condition but I will look it up and check with my doctor. I am so tired of being tired!! You know what I mean.
I think my surgery in January just kicked my CFS in big time because although I have recovered from the surgery well, the CFS is worse.
Thanks for the info and I will let you all know what happens Wed. thanks!
I am glad that you have meds that are now helping you. I am sure it makes a world of difference!
I am new to the forum. I have fibromyalgia and chronic fatigue syndrome.
I have tried the Savella. It was very effective for pain; but I experienced side effects of high blood pressure(I had no prior history), increased in heart rate, altered my mood severely, and increased my insomnia, decreased my appetite. It was the high blood pressure and heart rate that was deciding factor for me to discontinue the medication.
Savella is given in a "starter pack" with instructions to increase doseage pretty rapidly; I increased very slowly and tried continuing on a lower dose. Also, if you decide to discontinue the medication, you have to "work" backwards, and decrease slowly(unless medical emergency).
It's "normal" to be confused as to treatment. And yes. we all react differently; listen to your body, continue to educate yourself, and sometimes, unless medically contraindicated, you may have to just do "trial and error". Ask your physician for 2 free starter packs.
The second starter pack will be your "decrease" pack if you decide you are not able to tolerate the medication. Good luck,
Thank you for answering my post. May I ask if you are still on the Savella or something else? Tomorrow is my visit so will see what the doctor says but I am thinking no to the Savella. I have a heart condition and definitely don't need anything to mess that up. I have that part under control, lol, and want to keep it that way. Thanks for the advise and let me know if you have tried anything else!! Hope you feel good today. It sure is a day to day thing.
I have been suffering from FMS and MPS for 14years. Plus a whole host of other ailments. My experience with Savella was great to start with. It really did help alleviate some of the pain. As a few months went by i started to have awful side effects. The most troublesome were palpitations ( have Mitral and Tricuspid valve prolapses) ,nausea and stomach discomfort and the most horrible taste in my mouth. I woke up with it and went to bed with it. My Dr. lowered the dose by 1/2 but I lost all pain relief. When I tried to go back up the side effects started again. We stopped treatment and allowed 2 months to go by. It took 2 weeks for the taste to go away. She then put me on a trial run of Cymbalta. She gave me samples so I didn't waste money if it wasn't going to work. Unfortunately I could not tolerate it either. Nausea being the main culprit. I didn't even finish the first week. Also it made me feel very strange. Almost numb or distant from myself. If you do decide to try it, ask for a three week sample kit. That way if you don't like it you haven't thrown your money away. The only way you'll know if it works for you is to try it. Good luck hun!!!!
Good luck tomorrow at your appointment!
thank you everyone.I posted a journal entry today about my neuro visit but wanted to post briefly on here that he put me on Gabapentin. I said no to the Savella because of my heart condition and also I read that it interacts with my Lasix. No problems of that with the Gabapentin. He has me on 100mg 3x a day but I am starting with 2x a day, afternoon and night as it is supposed to make me drowsy and I want to see how I do on it. Yesterday was the first day so I cannot really comment. With the CFS,I am tired every afternoon whether or not I take drugs so hard to say. But I did take a nap yesterday and felt refreshed when I got up, which I haven't felt in a while. Thank you all for responding and Trudie, you know I love you!!
Hi, I'm new to all these forums
I've tried all these above drugs with no success. I was on gabapentin 800 mgs 3 times a day for 3 years with little success. Then we tried lyrica with no success. Then I was put on cymbalta and it aggrevated my IBS and I lost 20 pounds in a couple weeks with severe diarrhea and vomitting. Lastly, I was put on savella but my blood pressure was through the roof and I normally have low blood pressure, low meaning, sometimes I am on meds for them. Also, I became hypoglycemic on savella. So, we are trying a double dip, meaning, trying topamax for my migraines and nerve pain. My main question for writing here is how you all deal with the other conditions that seem to come with the fibro. I have suffered from lifelong depression and insomnia and currently take pristiq, which is ok, not great but it's the only stuff with no weight gain and since I have been on and off prednilosone so much and so much injections, i have gained almost 70 pounds and weighed almost 200 pounds. I'm only 5'4", so this doesn't help me. I also have 5 herniated discs in my lower back and 3 in my neck. 2 years ago, i had spinal fusion surgery for a disc that was remoived in my upper neck that was sitting on my spinal cord. Obviously, i have degenerative disc. I also have cervical facet syndrome. i also suffer from IBS and hypothyroidism along with WPW, which was corrected with surgery and I also have tachychardia. I also suffer from a couple anxiety disorders along with other chronic pain issues stemming from my previous life as a former serious gymnast. Living with fibro has been so hard for me as I was so active in my former life and I find it hard to keep going on. I have 2 children and this is even harder. I want to be a better mother but find it so incredibly hard. I barely sleep and I have no patience what so ever. I am in therapy on a regular basis and it doesn't seem to help much at all. I would like to go on something for my anxiety because I feel like this may control my pain, hence lessen some of my other meds but don't know if that's just wishful thinking. So, this is what I am taking, I'd like your input on how you deal with your other condition what seems to help you deal with your "life"
oxycontin 40mgs twice a day, dilaudid 8 mgs as needed for break though pain, levothyroxine, kapidex, dicyclomine, 50 mgs pristiq, 50 mgs twice a day topamax, 12 mgs 3 times a day of zanaflex, 800 mgs ibuprofen every 8 hours, max dosage of excedrine migraine as needed,. I believe I got everything. I may have left one out. and yes....occassionally, I may smoke a one hitter of marijuana at bed time for my insomnia as this is a proven no fail solution. but by one hitter, i aemn, literally, one puff of it as i dont tolerate it at all. I have a high tolerance for everything else though. I have tried everything. morphine no longer works and at a higher dose of fentynl, as i needed, i had a reaction.
Do you think if I went on an anxiety med, like a beta bocker, wihch would be a two-for (for my heart rate and anxiety) or xanax or something....would my pain decrease? I really need a better life. I recently tried opana and liked it. I had no side effects but my insurance wouldn't cover it. I'd love to try the ER and IR for breakthu, ive heard wonderful stories but that seems out of reach, i can't afford it so I need alternatives. Thanks
PS....did I mention, i can barely move. my doctors think I have MS also. I have lost alot of muscle function and lost muscle coordination, especially in my fingers, arms and legs
hi iv sufferered for many yrs with fm,,but this last yr it as gone alot worse,,,im on my own alot,,so that does help,gives u more time to think and feel sad ,lonely.i dont get much help,support or understanding from my family n friends...so i was thinking,,ther must be more ppl out ther like me,and i got to thinking,,,how can i get to know ppl like me,,who just need companionship,friendship,,so now im thinking,,how can i get a friendship circle going,,a chat, a cupper, experiences shared,,just be ther for each other,,it could make all the difference,,,im in the farnworth area,,if anyone is like minded,pls conntact me,with help,advice,id be so grateful...regards viv x
I have been on Topamax 25mg twice daily for 5 days. I do not notice any difference in my headaches, however, I seem to be very fatigued. Is this something that will improve after time? I also take Prozac 20mg once daily and Tramodol 50mg as needed. Any suggestions for added relief?
Let me share my success with you - Savella has saved me in so many ways. My physician told me that typically only 50% of the people who take Savella have much luck with it and I'm not sure if that's an accurate percentage. However, for me it has saved me in so many ways.
First, I have tried Lyrica - worked great for awhile, but then the side effect became so horrible and I was like a walking zombie and eventually after 5 months of trying it and hoping the side effects would go away I finally had to stop taking it.
My doctor tried Neurotin and it worked for a few weeks and then just stopped working and it made me extremely tired all the time. I would have trouble waking up in the mornings.
I was so depressed and in such despair and wondered if I'd ever get relief. The pain I was in was getting worse and worse and the depression worse and worse. When I visited with my doctor the beginning of June I was crying almost nonstop. She suggested Savella.
So, I tried the tritration pack and became extremely sick to my stomach and my head felt like it might expload and I was unable to sleep at night. I was told these were side effects that should go away but it could take some time. I decided to give it a chance and took Phenegren with it to help with the sick stomach. After a month, the side effects went away and my whole demeanor changed. I finally felt relief after a decade of pain and distress. It has helped with my depression too. I take Wellbutrin in the morning and then Savella twice a day. What a lifesaver for me!
I still have break through pain from time to time and I'm back on Lortab when the pain is horrible - but I find I do not have to take it very often.
I feel so blessed! I only hope that others can give this medication a try and put up with the side effects until they can get past it - it is a miracle to me.
With that said, I know it does not work for everyone. My thoughts and prayers are with you all!
Oh, by the way, there is a muscle relaxant she is treating me with as well that has also done wonders. It stops the muscle spasms. It's called "Tisadine" also known as Zanaflex. It works by helping the receptors in the nerves.
when was the last time you went to your doctor. You have alot going on and I personally, feel incompetent to answer your questions. I feel badly for you though and would like to know you are getting help. Have you had a brain MRI to test for multiple sclerosis? I just had one Tuesday to check on me. I will feel more comfortable for myself to know or not. You seem to be on alot of meds that should be helping with your pain; however, please check with your doctor, perhaps an anti-depressant (maybe one of your meds is one already, I don't know). You could have alot of interactions. Let me know, ok? I am struggling too, so I understand.
HelpinUtah,I am so glad that Savella has worked for you. I hope the Gabapentin does the same for me. I am on a low dose and have not had any side effects yet. I also take Klonopin at night. It is hard to find the right meds and it takes time. I am glad you are feeling good, so happy for you. I hope the same goes for the rest of us! We all need it!
Hugs to all,
I have had an MRI for MS but not one in the last 3 years. My neuro thinks I might but not yet in my scans. I am on an anti-depressant...pristiq...it's new with less side effects. but on a positive note! I just found out I have Pernicious anemia, another auto-immune, where my body doesn't absorb b12 and my levels were very low. If they were much lower, I would've needed a blood transfusion. I now need shots for the rest of my life and have to watch my kids because it's hereditary. A lot of my symptoms have probably been exacerbated by this so I am hoping for some improvement soon. I have to have daily injections for a few weeks and then move to monthly from that point forward. Thanks for being concerned. My doctors are very good and I am thankful. MY primary is constantly researching the latest things for me so I can have the best quality of life and I am thankful and she is very proactive to make sure my specialists are doing what they need to be doing. I haven't been to my neuro in awhile but i have to go back because I have been having some new neurological symptoms lately that have been concerning her after I was bitten by a spider and the bite was infected. I was treated for MRSA just to be safe but I had a strange reaction to the infection and antibiotic. The topamax is still working great for me and I am unsure if the weight loss is attributed to the levels of cortisol dropping in my body or the topamax but either way i will take it and I have only had less than a dozen moderate headaches,,,,headaches!!! not even a migraine since I started the stuff. I'd take 3 migraines a week frankly and be happy with that!! I'm hoping after my B12 goes up, maybe I won't need the topamax anymore or maybe even my anti depressant too. That'll be 3 less pills a day and that is worth it!!
I hope your struggles get easier too and if your doctor hasn't already, I strongly suggest getting your B12 checked also. A good sign is to check your fingernails. If they have ridges and most of your moons are gone, it's a good indicator!! I only have moons left on my thumbs. Your B12 levels are very important and can be life threatening and cause so many symptoms so similar to many that we all probably have. Good luck
crepe! my moons are gone!
Thanks for all the info you posted! I am so glad that you are finally on the right track. Doesn't that feel good? My B-12 is fine, thank goodness but I take extra B vitamins because I knew it could help with CFS. I had a friend who was like you and she almost died. She ended up in the hospital with blood transfusions because the doctors didn't figure it out. She takes shots now for the rest of her life and she is doing good. She lost weight too because she finally felt good enough to do something! So all the best for you.
You need to be checked!!
I started the Savella because she (my doc) really wanted me to. I have the starter pack so we will see how that goes!!!
Good luck everybody!
I thought 4 years ago that I was going crazy, that my rt foot was my only issue. I went to a pediatrist for 3 years 2 of that in a cast. Finally I was sent to a Rhumatologist and she told me I was very sick. I have Psoriatic Arthritus, Bechets, and Fibro. I was beside myself and though that the solution would be simple. I have been on Neurotin which did nothing for me, Gabapentin did nothing, Lyrica packed on the weight, Humira didnt do much and now am on quite the cocktail of meds. I started Savella last night and cant decide if I was up all night due to the meds or the new snow we have. I am also switching to Sympanie (sp?) for the PA, and take Oxie for the pain at this time. I have more energy than before and feel like there might be hope at the end of the tunnel here. Before I felt like I was going downhill fast for being 37! I have not had much support from others who also have the same things I do, but would like to make group friends to ensure that I can vent and not be looked at as if I was crazy (like the family does now to me).
Best wishes to each of you, it is a long road and I am scared that there will not be a remission in my future.
It's hard, isn't it? and even harder when family and friends don't understand, but someone with the same issues will understand and you should feel free to vent, talk, ask questions on here. I started the Savella in July and felt more energy right away too and thought, yeah! So I hope that stays for you. For me, not so sure, they might need to up it but I think I am having some other side effects so I am going to see my doctor. I hope that you have a doctor who you can talk to and is understanding! Good luck
Hi I am new as well. I was diagnosed about 3mos ago with fibro. My new symptoms are these interal shakes or my body idling. Then my ears flutter and then sometimes it moves to my entire head and face. Doc thinks it could be migraines without the pain. I am currently only taking Xanax and advil for the pain. Was given gabapentin but was just a little worried about the drowsiness since I can't sleep well because of the idling or vibrations whatever you want to call them. They are 24/7. The neuros just look at me puzzled. Any thoughts? Had ct MRI for ms and negative. Any thought or do u have these sx?
Thank you for your kind words. This past weekend I had family over and they brought their husband with her. He was a mechanic, and many other things in his career and has had a devistating attack to his brain by Gabapentin. What I mean is he was a smart guy who was always on top of what ever was going on and now he acts like he has had a labotimy (sp?). I found him petting the coffee pot like it was a dog, saying how well it worked and how it was a mystery to him.
Is that normal? I did not have these issues when I took it, I just always felt like it wasn't doing anything for me.
In previous years I was prescribed Effexor to deal with chronic pain and so I was open when my doctor just gave me a sample pack of Savella to treat me for chronic back, hip and S.I. pain. At first I was thrilled to actually be able to sleep through the night however on day 6 of the packet a severe headache turned into a trip to the emergency room. I literally felt like my brain was going to explode because of how severely the Savella caused the blood vessels in my brain to dilate. I found myself trying to picture my baby girls faces and telling myself that this could not be the way for me to die.
Six doses of dilaudid, one cat scan and two spinal tap attempts later the E.R. doctors were able to confirm that I was indeed having a reaction to the Savella. I was unable to walk for an entire work week after this fiasco and the headaches haven't ceased yet and it's been 6 days since the reaction. I strongly discourage anyone from trying Savella. I have never had such a horrible reaction to any pharmaceutical drug.
Yes I would be very interesred in topamax and lyrica. I feel like a guinnie pig. I am gainning weight and just sarted topamax which mad me feel dizzy.Any help would be great.Rebecca