Which Anticonvulsant works best for you? Gabapentin? Lyrica?
 

I'm currently taking Gabapentin. It helps with the burning, but I have brain fog and memory problems on it. Docs have suggested trying Lyrica. I am open to it, but don't want to jump around on meds if I'm just going to have the same issues... I'm pretty sensitive to meds, and it seems like if there's a side effect I'll get it.

I'm only 24 and am trying my best to improve my life. It's so hard to get straight information from doctors, so I would appreciate any info you might have, especially if you've taken Gabapentin and another anticonvulsant so you can compare. But all accounts are helpful!

Sending you all lots of (gentle) hugs!!!

~Pamela

hey pam. I was put on neuron tin(gabapentin) and in the 3 months i was on it I can't tell you about much because it clouded my mind sooo bad . my kids called me ten second tom. I went to see i am number four in the movies and I didn't remember even going let alone anything about it. plus if it wasn't a regular pattern of life I didn't do it. that bad plus It made me bloat Baaad. I WENT FROM A SIZE 38 TO A SIZE 44 IN ONE WEEKEND . and it did nothing for my pain. I was finally taken off . then my psych dr put me on Lyrica to try and help with pain. well it didn't help that but it addressed my insomnia. it actually made me go to sleep. where ever i was. so waking up is an issue now but I can get a cple of solid hours a night of sleep . good with the bad. drug treatment is trial and error. I also take amitrypaline(elavil) with is an antidepressant also used for pain management and it helps with sensitivity. not a lot but enough where i can feel a difference. I also take amrix with is a muscle relaxant. that helps calm the spasms some and vimovo for an antiinflamatorant and antacid combined. it helps the joints and of course the heart burn. its a lot and its still not as effective as it needs to be but its life. speak with your doctors though and explain the best you can what you are going through if it helps keep a journal and bring it with to your drs appt,s. good luck and god speed

Pamela,

Your question is one that has been asked many times. While treatment of many conditions is unique to that individual, it REALLY seems to be even more unique with treating CRPS. I have done quite a bit of research on it and what works for one person may (or may not) work for the next.....

Many doctors will initially prescribe neurontin (gabapentin is generic for it) and then go from there. That is what my podiatrist did for the CRPS in my foot.

The gabapentin works reasonably well for me, but I will agree that there is a bit of brain fog. It has cleared some over time as I have gotten used to the drug, but I still am not as mentally sharp as I was before I started taking it. I now make lists every morning to help me remember things!

The doctor tried weaning me off of the gabapaentin to see how well it really was working and boy did we find out in a hurry that it IS working! So back on it and the pain was definitely much better controlled. I take gabapentin, amitriptyline and trazadone (for mood/sleep). And another VERY important medication for me is naproxen for inflammation and associated pain. Oftentime docs will prescribe the 500 mg version of this drug, but to save a few bucks I just take two of the 220 mg of generic naproxen sodium available anywhere. Really the same stuff. I take 440 mg twice a day (always take naproxen with food and long term under doctors order) So that is my meds cocktail. It took me a year to develop this meds mix and while I would never rule out experimenting with Lyrica, etc.......as you always wonder if the grass is greener on the other side, for now I'll stick with what is working relatively well.

So there is no definitive answer. Sometimes you have to experiment a bit, which isn't fun, but if it results in better pain control, it's worth the effort.
Keeping a pain journal and notes about what works/what doesn't is definitely a good idea so you have some "history" to refer to as you work through this roller coaster ride. And never hurts to revisit what you are taking periodically as "tweaking" is often necessary.

Good luck to you and keep us updated!

Lyrica worked MUCH better from me. The neurontin/Gabapentin really didn't do much for me at all whereas with the Lyrica it was definitely a noticeable difference. But everyone is very different. Sometimes finding the right combination of meds is the key. But if one of the symptoms is particularly bothersome then it may be worth it to try something new. Just make sure to taper on/off the meds. I had a few doctors that were putting me on and taking me off meds abruptly and it really messed me up big time last year and I ended up with seratonin syndrome in the midst of a whole bunch of new RSD symptoms. NOT fun. Always be careful with any meds you take.

hey birch lake... just some info u may like I took napraxen too and yes u r right eat first but it still caused me problems. so my PM put me on vimovo with is basically napraxen and nexium in one. I hope that helps...
Pamela I hope these responses show how different each of us is ..ie treatment and what works and what doesn't . all we can do is tell u how it works for us so like catra said search for your ideal treatment but use caution. know the drugs pros and cons first then ask the dr what they are hoping for with that drug and a journal will only help.

Thank you so much for all of your perspectives. I know everyone is so individualized, but even so I find your stories helpful in making leaps to try different medications... I think I'm going to give Lyrica a try. I figure if I don't like it I can always go back to Gabapentin.

Gentle hugs to all :hug:

gabapentin or lyrica
 

For well over a year I have taken gabapentin first 300 and until 2weeks age 1200 mg 3 x day and I had a block in the front right under my collar bone with the last one causing excruciating pain all over my body and I had already had 6 from my lower spine all the way up to my neck with no relief from them either.. I went to see my PM Dr and they wanted me to try lyrica. Tapering me off the other I was feeling so much pain already I couldn't tell ya if it was good bad or indifferent. Yesterdays Dr visit she decreased gabapentin To 2 a day for 5 days and 1/2 for 5 days then stop. The lyrica 1 in the am and 3 at bedtime then increase to 150mg.. I know it has to get in my system but anyone know how long it takes. I am also on ms contin, percocet
, zoloft and zanax, the last 2 I've been on for over a year since I lost my oldest daughter in a car accident. According to the Dr 3 surgeries on my right foot and a hand injury plus chronic depression caused Mr RSD/CRPS to come settle in with me. The death of my child was bad enough.....and now this. It has been the absolute worst past year of my life. This pain is unbelievable not to mentioned my broken heart.. Entire right side and yep you got it it wasn't diagnosed until after 11 months. There's a special little window with this disease and if you don't catch it well I don't believe there's any going back. My stage of this I'm told is full blown and irreversible. The only thing not done to me is my last visit on Tuesday we dicussed a neurostimulator trial both in my neck then one later in my spine. Wow was my thoughts. This disease has taken over my life and not ONE DAY goes by that I'm not severe pain.....it gets really hard trying to cope with everything.

Saralee...please don't give up hope. And don't let the doctors take it from you either. I can't tell you if going with a stimulator (SCS) is the right decision for you because you are the only one that can make that decision. It's not for me and that decision has been made based on the risks associated with it and the high percentage of failure rates in RSD/CRPS patients. But there ARE other options and don't let the doctors tell you different and make you feel like you have no other choice.

Please see this thread that CRPSjames posted for you and another new member:

http://neurotalk.psychcentral.com/thread168953.html

And this one about tDCS:

http://neurotalk.psychcentral.com/thread168953.html

There's also ketamine out there as an option that has put many patients into remission. I don't know as much about it because it was far too expensive a treatment for me where as tDCS is very inexpensive and I can treat myself at home with no side effects and it is not invasive at all.

I'm not knocking SCS, as there are some people who are very happy with theirs, but I just want you to know that it is not the ONLY option out there. So when you are making decisions about whether to go ahead with a risky procedure, you should have the information about the other treatment options available.

Don't lose hope. If you read the tDCS thread started by ballerina I think you will be inspired by her journey with tDCS and the difference it has made in her life. Things CAN get better and don't you listen to any doc that says they won't. A year ago my family doctor who had been my doctor my whole life told me that I was just going to have to learn to live with the fact that I was stuck in a wheelchair. I left the office that day and never went back. I found a GOOD doctor who didn't give up on me and I am now walking and hope to never see that stupid wheelchair again. Don't let yourself give up...you have to keep fighting for your future without pain.

Originally Posted by ballerina
Hi Alt,

Please do your own extensive research regarding Spinal Cord Stimulators of any kind and CRPS.


*edit*
As with any treatment for CRPS, becoming educated is the best path to becoming a good advocate for yourself.

Do not include me on this list!
 

James, I have asked several times before not to be included on this list! I am having VERY successful results from both my cervical and thoracic stimulators. They had to change out the percutaneous leads for paddle leads in my thoracic SCS. This is not what I call a failure. To me, that "revision" was not a big deal, it was necessary and produces better results. I have NOT experienced spread because of them either.

I will not try tDCS, it's not for me. I cannot tolerate any of the medications or PT (or medication in the blocks any longer). SCS saved me! It gave me use of my hands and arm, so for now I continue to work because of SCS...that is success!!

Nanc

CRPSJames and/or ballerina (I am not sure who originated this list)
Please note that it is absolutely NOT OK to make lists and post them here about people's condition or their success or failure with any treatment
That is a complete violation of their privacy! and, as one member has already mentioned, possibly erroneous info!
If members want to post about their own treatment, that is fine, but you cannot make these lists and post them here

Hi Chemar,

I can't speak to a list today since I did not see it or post it. In the past I posted in response to a question on how to locate posts about spinal cord stimulator revisions, spreads and or failures. I did a cursory search, only back several months and only mentioned those who posted their responses in those exact categories. I did not think that someone's post on a public forum about their response to a treatment was private information, only that which was sent in a private message.

I only used the descriptions of the posters themselves with the reader being able to decide for themselves after reading someone's story that the risk of spread, etc. is worth it to them.

I know many posters have listed my posted comments regarding my own reaction to treatments in addition to listing my name to look up exactly what I experienced, including treatments that have had side effects. I was not asked permission first.

It would probably be helpful for all of us to know how to post and share this kind of information in a manner that encourages open discussion and self advocacy.

Thanks Chemar!

Ballerina, this is not exactly an accurate statement. On one of the occasions you listed names when someone asked the question of "has anyone had luck with st. jude stimulators?" My name was included in that list and I specifically asked you to not include me. I know I have seen my name on your list more than once.

Nanc

ballerina
the only time it is ok to quote another poster is on the actual thread where they have posted and using the quote button...it is not even ok to copy someone's post from one thread to another.

Only members themselves have the authority to post about themselves...no one else is supposed to copy their posts or compile lists about them or anything else like that without their permission, and that permission would have to come from them to us, not just to you.

Those lists you are posting are also somewhat in violation of our guidelines on using posts by members here to conduct "research"

Thanks Chemar for the clarification. I didn't know that posts could not be copied from other threads. That is certainly good for all of us to know because it seems to be done. No more lists.

But it is ok for someone to list me and suggest reading a particular post to learn more about my reaction to a particular treatment??????

I am unclear how using the search button to look up treatment outcomes constitutes "research." Do you mean it is OK to do that but it cannot be shared or posted?

Thanks Chemar!

I would like to know this too because I know I have suggested on a number of occassions that people check out the tDCS thread to read about ballerina's experience (and my own too but ballerina's story was particularly inspiring and is what led me to the treatment). If this is not okay I will not do it again. And if it's not okay with YOU ballerina I also will stop and I'm sorry if I ever overstepped. I always link to the thread though rather than relating the specifics of what you have posted. Just would like to check to make sure I am not doing something which violates anyone's privacy.

Catra,
When I post something on a public forum I expect it to be just that. You certainly have not overstepped any bounds as far as I am concerned. Lots of people have copied threads and named many folks and their reactions to treatments.

I joined NT for the purpose of learning and participation in the lifting of the veil on CRPS. I hope anyone who reads my journey will use it in any way that can be a benefit to them.

I have also mentioned you in my posts because you are absolutely so amazingly inspiring, particularly given your age. If you mind I will stop. Although I did not mention your log in name, I shared your success with Dr. Fugedy and he is so excited he would like to speak with you!

The beauty of NT is that so much information is available to us to improve out conditions, and yes-maybe see remission.

You can search whatever you like for your own information and you can refer anyone to any post by anyone using a link to it (or quoting from it if on the same thread)...but you cannot search other members' information and then present it as a "list" or document or whatever else....as you have seen just here...you did so using Nanc's info incorrectly and without her permission...she and any others have every right to object to that

I hope that clarifies

and do remember, while these forums are publicly viewable, the site is privately owned with guidelines and Terms of Use which every member agrees to abide by when they register here.

Thanks. You have my permission to share anything I have posted on the forums as well. Just wanted to make sure we all understand each other so as to avoid any misunderstandings in the future. I am very grateful for NeuroTalk and all that I have learned here and that others have shared. I haven't always agreed with everyone's opinions, but that is each person's right to believe what they believe and everyone's individual experiences are their own. Whatever treatments or tricks give someone relief from this awful condition, that is a real blessing.

As this was the original post on this thread, I am bumping it back up to get this on topic again.

Thanks, Chemar! I think I'm in the process of switching from Gabapentin to Lyrica. Just went and picked up my new perscriptions and will start to taper/titrate starting tomorrow. I'm kind of nervous! Any change that could affect my pain represents room for improvement/hope, but also room for disappointment/pain. Wish me luck.

(And please keep sharing your experiences with anticonvulsants -- I'm far from decided that this will be the way to go for me)

Good luck Pamela and be sure to keep us updated on your results and how the Lyrica works for you! As a gabapentin user, I'm interested in how people do with both.

im currently taking gabapentin 600mg 3xday....it does mess w my brain! the fire has breakthroughs too which can be excrutiating! also tegretol 200mg 2xday

I've been taking Lyrica since 2009, from 300-600mg depending on my activity/mental state. When Lyrica works, it works very very well...

Long term side effects for me are blurry vision that went away after a year, usually only happened right after I toke a pill. Drinking Alcohol is very intensified, one drink feels like you had five. You can learn to tolerate it, but it highly recommended that you do not drink! It does mess with my emotions a bit, but typically you should be on anti-depressants if you are suffering from chronic pain anyway. gabapentin and pre-gabapentin causes me some extra anxiety.

I have observed many people starting to take gabapentin and pre-gabapentin over the years and the biggest problem I have seen is that the doctors/patients are afraid to get to a therapeutic level of the medication because of the side effects of under dosage. When you tell you doctor you feel dizzy and have chronic drooling syndrome, and he says take more! and you are like are you nuts! He is correct, when you get to a therapeutic dosage all that goes away. Talk with your pharmacist if you have a doctor that is keeping you at a dosage that makes you feel dizzy.

The other problem is the myth of weight gain. Simply if you gain weight switch to gabapentin or vise versa if you do gain weight. The weight that is gain is more than likely either becoming more sedentary because you are no longer in pain, or your anxiety is causing some extra eating. Before you quit because you think it is the pill that is causing weight gain, use a calorie counting program to monitor your intake, and exercise. Being able to sleep for the first time in years uses a lot less calories than tossing and turning all night. Gaining weight is real and can happen fast, but if you take control and monitor and adjust your food intake you can probably avoid this.

With all that said... medication is only 1/2 the battle. If you having high anxiety and panic, depression, isolation, no pill is going to very effective. Your anxiety controls your level of how much the pain HURTS you. Anxiety can increase the inflammatory reaction in your body, and causes the pain intensity part of the brain to go into over drive.

Not everyone has positive results with gabapentin or Lyrica.

There were just two studies published that showed Lyrica is only equal to placebo for chronic pain, by Pfizer.

And a large metastudy done on gabapentin analyzing the past studies over the years found only 30% of people found pain relief from gabapentin.

Here is another thread that discusses this:
http://neurotalk.psychcentral.com/thread169216.html

So basically people are not all going to profit from either drug, and encouraging them to raise doses, is not going to work for everyone.