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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


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Anyone have any experience with these two drugs in combination, Topiramate and Lyrica? My Rx. Dr. just recently prescribed the Topiramate and I am to use this in conjunction with the Lyrica. The Lyrica has been effective, up to a point. The fact that I have put on nearly 40 lbs. since the official Dx. has me disturbed and thankfully Gaollan suggested this prescription to ask about. I cannot remember if my Rx. Dr. said that I will be weening off the Lyrica or if I am going to take them together. Since they are so similar I would not think so right? Thanks for the help and all the support.
I would think you will step down off the lyrica while you step up the topomax. It shouldn't be taken together for a prolonged amount of time. Every time I've heard of the switching between one drug and another, it's step down on one and step up with the other. Then, of course, you stop the old and continue with the new. :-)

Hugs,

Karen
Hello Xavierlml,
I too gained 45 pounds, from neurontin and then from Lyrica. But, I try to put it into perspective. I'm able to walk, and I work 15 hours a week, and most of the time, my pain is manageable. I hurt, but the Lyrica pretty much keeps it under control. I also take Trileptal, an anti-seizure medication. My confidence about my body has lowered, but I know that my husband, children and family loves me no matter how much weight I gain. When I was diagnosed in October of 07, I was a size 10. Now I'm a 1X, mostly because of meds. The other reason is because I'm not walking 5 miles a day for exercise like I used to before my foot surgery. I tried Topomax with the hopes of losing weight but holy cow -- It gave me the worst memory loss I've ever had. Lyrica gives most folks memory loss, but the Topomax was much worse so I quickly stopped it. :dizzy: Is Topiramate and Topomax the same medication? Forgive me, but I've not heard of Topiramate. I do take an occasional Vicodin in the evenings cuz that's when my pain seems the worst. Mine is not work comp. and I'm very fortunate to have a doctor here in San Diego County :cool: that is familiar with RSD.
This is a wonderful board -- You can vent whenever you need to and we're always here for you. We all can support one another and we can share insight and experiences with this awful disease. It's a great source of friendship.;)
Take good care, and always try to think positive about the little things in life that make you smile -:)
Deb
[QUOTE=Gaollan;3932077]I would think you will step down off the lyrica while you step up the topomax. It shouldn't be taken together for a prolonged amount of time. Every time I've heard of the switching between one drug and another, it's step down on one and step up with the other. Then, of course, you stop the old and continue with the new. :-)

Hugs,

Karen[/QUOTE]
I can always count on you for a reply, thank you. It is nice to know. Your right, it will probably be a step down thing. I probably forgot that part. Every time I go to the Veterans Administration Hospital in Ann Arbor I have 3 or 4 appointments and things tend to get forgotten. I have started a diary of sorts to be able to remember all this stuff, problem is I forget to write in it sometimes. I love what these meds. are doing to me. Question, would the Topiramate or Lyrica be considered "heavy" medications? I take Lyrica/Topiramate, Efexxor, Methocarbomal and Etodolac. I definitely feel heavily medicated. All the meds. make work very difficult because of the drowsiness, not to mention the brain farts and so on and so forth. I am looking into Social Security disability. Scary proposition, but work I think is worsening my multiple conditions. Ugh!
[QUOTE=RoseinSanDiego;3932242]Hello Xavierlml,
I too gained 45 pounds, from neurontin and then from Lyrica. But, I try to put it into perspective. I'm able to walk, and I work 15 hours a week, and most of the time, my pain is manageable. I hurt, but the Lyrica pretty much keeps it under control. I also take Trileptal, an anti-seizure medication. My confidence about my body has lowered, but I know that my husband, children and family loves me no matter how much weight I gain. When I was diagnosed in October of 07, I was a size 10. Now I'm a 1X, mostly because of meds. The other reason is because I'm not walking 5 miles a day for exercise like I used to before my foot surgery. I tried Topomax with the hopes of losing weight but holy cow -- It gave me the worst memory loss I've ever had. Lyrica gives most folks memory loss, but the Topomax was much worse so I quickly stopped it. :dizzy: Is Topiramate and Topomax the same medication? Forgive me, but I've not heard of Topiramate. I do take an occasional Vicodin in the evenings cuz that's when my pain seems the worst. Mine is not work comp. and I'm very fortunate to have a doctor here in San Diego County :cool: that is familiar with RSD.
This is a wonderful board -- You can vent whenever you need to and we're always here for you. We all can support one another and we can share insight and experiences with this awful disease. It's a great source of friendship.;)
Take good care, and always try to think positive about the little things in life that make you smile -:)
Deb[/QUOTE]

Hey Deb, nice to meet you:D. Thanks for your input. I really do appreciate all the support. Your right about this board. I think I would be just a little closer to the edge if I hadn't started writing here.
The Topiramate is Topamax. I just started taking it so I will not know the full effects for a bit. Hopefully it will be no worse then what the Lyrica has done to me, but without the weight gain. How vicious this RSD is, not only do you have to deal with the lack of use of that body part, the pain, the pain, the pain, then there is the nerve pain, the loss of friends and family and the weight gain and other effects of the medications that you will most likely be on for the rest of your life, not being able to work anymore, the depression...... Okay I'll stop, I'm making myself more depressed:(.
I am happy that your family has been so supportive, that is a biggie. And having a doctor that knows what the heck their doing, what I wouldn't give for that too. My Friends/Family don't get it, at all. I started talking about the real probability that I will not be able to continue working due to the multiple dysfunctions I have and was giving the "what for" for even bringing it up. How dare I speak of such a thing. I mean really, all I am going to do is wind up sitting around all day anyway, why not continue working. As an aside, I work from home taking vehicle donations over the computer(phone) for a charity for disabled and combat wounded Veterans. Funny thing is, I went through Vocational Rehabilitation to learn new job skills because even before I got the RSD I was really bad off physically and could not stand the required time to perform full time work. Now I can't stand or sit. Wonderful huh? To wrap it up, I am screaming inside. I am screaming outside, I am screaming at my girlfriend and my Mom and Dad. I am screaming at the VA for taking so long, with everything. I'm screaming at my therapist. But the screams fall on deaf ears. I know you all know where I am coming from.:dizzy:
Nope, neither one of those are considered "heavy" meds. Those would be morphine,fentanyl, etc. Everything else is just a med. It's easy to feel messed up in some way when you get on more than a couple of meds. Every med produces some kind of side effect and of course so many just up the chances of multiple ones at a time.

I feel lucky because after I take a few doses, I have no side effects at all. There are sites around where you can find out if what you take might have some kind of interaction. I always check. Most docs don't even think about it, sad as that is!

Hugs,

Karen
Hi Xavier,
I totally understand about the screaming, I got into a two day p****ing match with my mental health provider over what is and isn't covered. Finally got an appointment and was told that he was in network and didn't need a referral and to tell them if they have any questions to please call my primary care guy. I was in his office for all of 15 minutes and since I already am on clonazepam (and he can't get his drug kickback, in my opinion) he couldn't figure out why I was there. I told him I have 2 doctors and a psychologist telling me I need to see a psychiatrist so here I was, he says there wasn't anything he could do and I needed to talk to a social worker. He has several and would I like to talk to one of them? (In that you're a two year old voice) I ask if it's covered and he tells me I'll have to check into that myself. OMG! At this point I'm starting to cry begging them to do that for me as I can't take anymore of trying to navigate the mental health benefits system. They said they "might" be able to get to it sometime today. I am crying at this point and they just let me leave. I ended up calling them back and telling them to forget about it since they were not concerned with my mental health that I'd figure it out myself. I then spent half the day getting names of "social workers" from my mental health people and every last one of them was a psychologist and I already have one of those.
I ended up calling the help line at work and hanging up on them a couple of times due to the uh - huh, uh- huh (sorry I interrupted your Warcraft game) and finally got someone that is trying to help. I can call and hopefully get an appointment for free with a social worker tomorrow. Here's hoping it works.

I understand about the work thing too, there are some noises that make me feel like someone is tasering my central nervous system (for lack of a better explanation) and make me scream. New ones are discovered all the time. I have severe anxiety too. My "friends" at work don't get it. I can't work like that in an office with cubes and people and ringing phones all over the place. Sounds silly now, but when it happens it is terrible.

Do the Social Security thing NOW, the worst that happens is they say no and it can take up to 6 months for approval and that is assuming you get approved the first time. Get a lawyer and apply. If you need one send me a PM, I'm pretty sure the people I found will do Michigan too. It was a hard decision for me to make because I fought this diagnosis for a couple of months saying this can't be what is going on. This can't be my life and it will get better, it didn't. Then I got real, read up on what I was being told, got scared and applied. My psychologist said it's better to not work than to lose your job because you've messed up due to your drugs or brain farts, I didn't want to hear it then, but he was right. LOL Hope this helps you decide to do it, you've paid into the system, it's your tax money too, use it.

How's Michigan? I'm originally from good old T.C.
Hi Xavier,
First - :angel: thank you for your service. Second, second since I feel like a prisoner to the Work Comp system I can honestly say that I am sorry that you are dealing with the VA system. I used to deal with the VA system as an EMT/Paramedic and then as a Navy Wife - it was never a pleasant experience. Yes, I know why you feel like your screams fall on deaf ears. We do hear you, we are listening, we are here for you. That is why this board is here. In case you don't already know about it - and if you are uncomfortable always posting in the board format - there is a function called "Private Messaging" that allows you to post privately *duh* to just 1 or 2 users - you can go to the FAQ's to find out how to turn this on in your My Settings - if you need further help than that - just ask the Moderator. Please know that we are all here to help - there is almost always someone out here that has been through what you are going through. I can even provide lots of experience of dealing with combat Veteran stress. Please don't ever feel alone - reach out to us however you feel that you must. We are here. As for your question about meds - I take most of the "heaviest" ones - and once my body adjusted as I tapered up - I was fine - I was groggy at first but after having been on them for a little over a year now noone would know I'm on enough narcotics to stun a 1200 pound horse now! :eek: (literally I found that out the other day when a friend of mine told me how much meds they used to give her horse to sedate him to float his teeth! - I didn't mention that it was the same amount I use in a day) anyway - you can all laugh at me about that an neigh at me when we have the RSD reunion when we find the cure but for now it's all good ;-)
Take care of yourselves,
Hugs,
Lissa
First I wanna say, thanks Ladies for all the kind words. I am not combat wounded, hope that I did not give the wrong impression in my post. I am not trying to seek any undue anythings (can't find the right word). Also I should say that parts of the VA do work, like Vocational Rehabilitation. The people at Occupational Therapy hooked me up with a chair for the shower and fancy gel padding for my office chair that was severely lacking the lumbar support I need. But I am still upset that it took two years worth of appointments with Orthopedics to get a damn surgery that severely hampers my future. I am upset that every x-ray report I read says that an MRI on my ankle would be very beneficial, and still to this day even with the Dx of CRPS they have yet to do one. I seriously had a Dr. tell me @ 6 months ago that it is just too expensive. Huh, what, excuse me.....? It really get's me that the little "abnormality" seen two years ago in my back has turned into DJD and Herniated Disk, bone spurs, etc.. Again, just looking a little harder maybe would have given me a chance to do something. So here I sit, swallowing these mind altering chemicals destroying my brain and other vital organs too. I will have to get over it and move on, I am not there yet I guess. One hurdle I need help jumping is knowing the line between good pain and bad pain. Have any suggestions?
hdladyrd,
I have no clue how you can not have any crazy side effects from the Lyrica or whatever you take. This seems crazy to me. I felt like I was half-stoned all the time and the was before the anti-depressant and muscle relaxer. You are so lucky. I know what you mean about enough meds to kill a horse though. I had a friend that suffered a severe head injury the was medded up for a long while. He never seemed any different then normal though, hmm?
Xavier - service is service -you chose to serve our country and for that I still thank you. Regardless as to how you were injured the fact that you must now deal with the VA system which is often very slow (even more so than Work Comp) is why I am sorry that you must often feel frustrated. I am not casting disparaging comments about our system - just commenting that parts of it don't work as smoothly as we would hope for our Veterans. Now... on to hopefully helping you with your medication process... side effects and Lyrica... they were TERRIBLE for me... I am now on Topomax which is a similar class of medications but works much more effectively for me with fewer side effects (but still had to taper up to my current dose and and I did have some until I adjusted - will discuss with you if you wish). Yes, the muscle relaxers will make you feel stoned - but they are much better than the twitching that I had - and still have but it is much better. Do you take Baclofen? If it is possible there is a newer medication out that is a 24 hour medication called Amrix - it is a "next generation" to Flexeril. If it is a VA approved medication it can help you get to sleep at night (benefit!) and since you take it once a day you get over the "stoned" feeling while you sleep and the benefits of the muscle relaxation/anti-spasmodic stay with you for the rest of the day.

Right now I don't remember if you have told us your story or not. I don't remember it if you have. (I'm sorry if you did - my pain is a bit high right now and I'm tired so no brain power right now) If it is possible for you to do so - when you see your physician can you change just one thing at a time. That seems to work best for us. I know I'm running out of room now so I'll stop - if you have more questions - please ask - that's what we're here for... best of luck to you and I hope you're feeling better and the meds are being nicer to you each day.
Gentle hugs... Lissa
Why is it things are "too expensive" when they're really, truly needed!?! *shakes head* I just don't get it and probably never will. It sucks you haven't gotten the care that could have saved you so many problems. I am so there with you. I sometimes wonder if I had gotten the "proper" care from wc after being dx with this crap after only 1 1/2 months, what would my life be now? Would it have spread so fast? Would blocks have worked or would I have still reacted the same way? Alas, I'll never have the answers to this so I just moved on. :-) LOL

You'll "get there" when you get there. There is no hurry and do not ever push yourself because someone else says you should be *fill in the blank* at this point.

Good pain and bad pain. That one jumped out at me because I've often thought of the terms but never seen anyone else express it that way. Good pain, to me, is what I can live with. The "usual" stabbing, shooting type pain, the sometimes crushing thing, the occasional burning, and all of the other stuff. lol Now, again to me, bad pain is what makes life a bit harder and makes for a bad day. The one in which I know I overdid it and am now paying for it, lying on the couch wishing various body parts were not there. The bad pain is so intense, it takes over my brain letting no other thoughts pass through.

It's a fine line between the good and the bad. The very first lesson was to find and know my limits. How much can I do without catapulting myself into the abyss of badness? Once you know the limits, you do what you can to not cross them. If, at times, you have to for whatever reason.....well......you plan ahead to meet it and not let it slam you to the floor. :-D It can be a planned day or two of pampering(yes guys can do that too. lol) or adjusting meds to meet the extra pain you know will hit x amount of time later on. Using heat, meditation, keeping busy so your mind doesn't have time to process your pain signals full on.

Ok....I've rambled. :p Did I get off track or have I even touched on the topic, a little, a tiny bit...not at all? ROFL Yeah....me and my, obviously, dysfunctional self tonight. If I need to be more specific, just tell me and I'll get back on track. I'll shut up now. :wave:

Hugs,

Karen
I was on the Amrix, and it works great. All of it's info says short term use only and when it quit working, oh boy did it. I felt like I had guitar strings breaking in my legs. My pain management guy looked at me like I was nuts when I used that explanation.

I also ended up losing 3 days where I was apparently perfectly normal other than having problems walking the direction I wanted to go. I have no memory of these days and I watched my roommate at the times finance's kid while he took her to the hospital, that scares me to death. I am pretty sure it's from being on the Amrix for so long.

I asked and my GP said it should have been fine to be on that long and I just laughed and said it's me. He laughed and agreed, (If there's a bad reaction to be had, I'll somehow find it) but did take the sheet where I'd highlighted all the symptoms of overdose that were pretty much what I ended up in crit care for not quite 24 hour stroke observation.

Just wanted to let you to beware of suddenly stumbling, going in the wrong direction when you try to walk and heart palpatations (silly me thought they were just panic attacks) and slurring your words if you're on it. I had to ask the neurologist about it and he said to stop taking it. My gait has improved a bit but I still fall over and go the wrong way all the time. I think it fried my little brain, LOL
[QUOTE=xaviermlm;3931717]Anyone have any experience with these two drugs in combination, Topiramate and Lyrica? My Rx. Dr. just recently prescribed the Topiramate and I am to use this in conjunction with the Lyrica. The Lyrica has been effective, up to a point. The fact that I have put on nearly 40 lbs. since the official Dx. has me disturbed and thankfully Gaollan suggested this prescription to ask about. I cannot remember if my Rx. Dr. said that I will be weening off the Lyrica or if I am going to take them together. Since they are so similar I would not think so right? Thanks for the help and all the support.[/QUOTE]

Well thats an interesting combination, as far as I know they both work the same way, I as the others here gained alot of weight on the lyrica. However I was since put on the topiramate for almost a year now and I have lost all that extra weight and more. To take both I would think you should half the dosage of each.. (actualy I would talk to my pharmacist or doctor again) or you would be taking double as they both are used for the same thing it seems.

NOTE* I was weaned off the lyrica before starting the topiramate because the lyrica was causing my depresion to go into major suicidal overdrive, it improved as soon as the lyrica left my system.

Good luck,
Sandra
I have never before heard of these two medicines being used together.
I would consult your doctor again.
S
Hi. Im a rookie..1st time here. I am on Topiramate and Lyrica. I actually have been on Topamax for a while but new to Lyrica. I have been having reactions to the Lyrica (weight gain and moods that switch and are amplified at the drop of a dime) Could it be I need to lower the Lyrica? I really like the effect it has had on me otherwise..drastic change for the better. Or..is there another med to replace topamax ?
I had the combination of the two for only a couple weeks so I really can't recommend anything sorry. I think the Lyrica is working good for me although it does have it's stupid side effects. I liked the thought of the Topiramate being that it could help with the weight gain. I didn't do well with it though. If I was stationary for more then twenty minutes I would fall asleep. Crazy huh? My Pain Med. Doc. said it that most likely it was the fact that was also taking Ziprasidone (an anti-anxiety medication). Sorry that we have to talk under these conditions though but I found that having people to bounce ideas off of and to reach out to helps ALOT, I have had a great experience here and hope you do as well. Peace and L:)ve.
[QUOTE=Sandel;3937724]I have never before heard of these two medicines being used together.
I would consult your doctor again.
S[/QUOTE]
My Pain med. Dr. has over twenty years experience with CRPS patients and is a licensed practicing Pharmacist. According to her these drugs are used in combination regularly.
[QUOTE=xaviermlm;3983719]My Pain med. Dr. has over twenty years experience with CRPS patients and is a licensed practicing Pharmacist. According to her these drugs are used in combination regularly.[/QUOTE]

Thanks, lyrica made my depression plummet and so it was replaced with the topomax.. as soon as I went off the lyrica my state of mind improved, however I understand that topomax itself can cause the same symptoms in some people, namely depression and suicidal thoughts, visions, nasty stuff.

be well,
S
hmm I guess you should put me down for bad memory symptom too.. I see I already wrote this a page back lol. :dizzy:
Sandra
I take Topamax - I can vouch for the suicidal thoughts. I had a really hard time a few weeks ago. Could have been partly attributable to the meds (but I some other horrible stuff going on, too, so who knows)... I also haven't lost any weight on it, but I haven't gained much either. I think it is definitely better than Neurontin and Lyrica in that regard.

It has helped my migraines A LOT. I haven't gotten a heachache that turned into a migraine since I started taking Topamax. I used to get really sick from them.

Sandy
Topamax Topiramate, defintly helps with weight loss and some good old memory loss, but it's not as soothing to the nerves as Lyrica, that one of it's best point, I find.

I really need to loss weight currently, so I'm going to ask my Doctor for a switch or 50/50. My pain doc's great and my GP just does what he says.

Effexor is great for a bit of an energy boost, but again it kills the memory, great antidepressant though and no weight gain.





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