OPINIONS PLEASE : Lyrica vrs. Topamax

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by tonakay, Mar 23, 2006.

  1. tonakay

    tonakay New Member

    My doc had me start lyrica 50mg at bedtime to help with leg nerve pain and sleeping. He gave me a sample bottle of it. I checked on my insurance for lyrica and it is a non preferred drug.

    I had read where some of you take topamax so I looked up my co-pay on it and it is covered. I am thinking of asking my doc to switch me on my next appt. but would like to get feedback from folks who have tried both...

    Pros and Cons?? Anyone??

    Thanks!
    Tona
  2. dragon06

    dragon06 New Member

    I don't know the difference between the two meds.

    I do know that my MIL was placed on Lyrica and her insurance co. had Lyrica listed as a non-preferred drug.

    All she had to do was fill out a request and have the doc contact the insurance company and submit a document stating that she needed to be on the Lyrica and then insurance company covered it no problem.

    If you are happy with the results of the Lyrica you may want to try this route.
  3. maris

    maris New Member

    Tonakay,

    Here is an old post of mine I found regarding a similar question.

    By the way I tried Neutrontin for nearly a year with no benefit but have not tried Lyrica.

    Here is my Topamax experience:

    Topamax 06/05/05 08:11 AM

    Dawn,
    My doctor started me with 50 mgs at night for one week, then added another 50 mgs in the am for two weeks.
    Then another 50ms at night for another week, and another 50 mgs in the am for another week, until I was up to 100 mgs in the am and 100 mgs in the pm.

    This ramping up was difficult, I felt weird. Things tasted different, no appetite, I felt slower like I was walking under water, definately felt drugged.

    This lasted about two weeks then I started to feel normal again but with less pain. The topamax seems to numb down the pain, I do notice tingeling in my hands and feet but I can tolerate that as a side effect.

    I have been on it almost for a year. It has help quite a bit. I do notice less pain and I've lost 15 pounds.
    Be sure to drink lots of water while on this medication, it can cause the formation of kidney stones, water flushes out the kidneys.

    I hope this helps answer some questions for you.
    Maris

  4. Tmprincess

    Tmprincess New Member

    Haven't tried Lyrica, but i can share my experience w/ Topamax!

    I've been on 100 mg for six months now and it has dramatically cut my migraines by about 60%! I was one of these people who was having migraines 24-7 though.

    It really takes a while to get into your system and start feeling results. The dr. said to expect three months and he was right! The numbing/tingling in the hands and feet was something i was already experiencing before the medication... so this really intensified it! But, after the three month period i don't notice it as much or is not as strong as it was initially.

    You do have to drink lots of water with it though!!... I was already in the habit, so not a problem for me. At the time i was trying to make some major diet changes (processed foods to organic, etc.) and this came at just the right time for me!! I've lost 25 lbs on it! A friend of mine eventually had to go off of it b/c of loosing to much. Which i may have to do too eventually... and actually that is my goal! Is to get my diet to a place it needs to be, so that i don't have to be dependent on these drugs.

    I hope this helps you some in your decision process! So sorry you have to deal with these nasty migraines! I feel your pain. Hope you find some relief soon!

    TM~
  5. kdeenak

    kdeenak New Member

    I have never taken Lyrica, but have been on Topamax for some time. It helps me a lot with my fibro. I take 50 mg twice a day. It has helped me more than any other drug has with it.

    I used to take a lot more, I can't remember the doseage, I want to say 200 mg, and I got better, and went into I think remission, and was able to get off of it for almost two years until the fibro came back.

    I don't have any side-effects except that I can't drink coke, but can drink Diet A&W Root Beer (weird huh?). The carbonation tastes strange, flat tasting. Also, when I first started it I lost about 50 pounds over a period of a year. It made me crave fruit and have an eversion to sweets. I don't have that on the lower dose too much. I was told that the reason for this is that it affects the nerves in your taste buds I think. When I stopped the Topamax my taste for Coke came back within a couple of days.

    I agree with the last post though, you have to very slowly start it, and you can feel a little tired from it at first, but that leveled off for me in a couple of days once my body got used to it.

    However, if you like the Lyrica, it may be worth sticking with, especially if it is making you feel better. If not, Topamax is worth a try. Some people just can't tolerate the side-effects.

    Hugs,

    Deena
  6. Tmprincess

    Tmprincess New Member

    Not sure how long you've been on Lyrica... but check out the post by; kytriplets Involuntary Muscle Jerks? .... lierikajerk, had something to say about taking Lyrica!

    TM~



  7. tonakay

    tonakay New Member

    Good FYI... I am not taking lyrica for migraines, I have those under control with Maxalt. The lyrica is for leg nerve pain and sleeping. I'm still on a sample bottle, not been on it long at all.

    Thank you princess.... I read the post and that's some scary stuff.... jeez why do all the side effects have to be so bad???

    Thanks all,
    Tona
  8. Tmprincess

    Tmprincess New Member

    Topamax is a migraine/seizure PX;


    TOPIRAMATE - ORAL
    Pronunciation: (toe-PEER-uh-mate)
    BRAND NAME(S):
    Topamax


    USAGE:
    Topiramate is used alone or with other medications to prevent and control seizures (epilepsy). This medication is also used to prevent migraine headaches and reduce how often you may get them. Topiramate will not work to treat a migraine headache once it occurs. If you get a migraine headache, treat it as directed by your doctor (e.g., take pain medications, decrease sound and light).

    Topiramate is an anti-seizure medication (anticonvulsant) that works in several ways to prevent seizures and migraines.
  9. munch1958

    munch1958 Member

    My neuro gave me Topamax for migraine headaches in September. I quit taking it because of intolerable side effects. My food tasted awful. I had numbness in my arms and feet before and the drug made it 10 times worse.

    I was exhausted before taking it and found myself zombie sleeping (or napping) about 18 out of 24 hours. For someone with insomnia this sounds like a dream come true. It wasn't a restorative sleep. It was light sleep where my brain was still stuck in "ON" mode.

    I couldn't focus on a book or a TV show. The nickname for Topamax is Stupamax or Dopamax for a reason. It makes brain fog much worse in my opinion. I couldn't spell simple words or come up with the names for things. I did not lose a single pound!

    According to the topamax page on crazymeds you should contact your OB/GYN if you are taking oral contraceptives while starting Topamax. There's a lot of good info there if you are considering taking this drug.

    In March 2006, my pain clinic doctor gave me samples of Lyrica. I gained almost 7 pounds in 5 days. Most of it was due to bloat which made my headaches even worse. Lyrica is recycled Neurontin which did nothing for me either. The patent is running out on Neurontin so they have to reformulate it.

    Everyone is different. All you can do is try different things until you find some relief from this DD.
  10. Cool_Beans

    Cool_Beans New Member

    Tona,

    Hope all is well (or as well as can be) with you and yours! I have been on Lyrica since Sept/Oct of 2005...alot of the side effects that you get right at first go away (the spacey feeling, being real sleepy, the "I Love You Man's," ect.), but I have the swelling and weight gain. I take 150mg 3x day. I am trying right now to ween off of it because of the weight gain and swelling--history of heart problems in my family has doc concerned about the 30# I have gained. I will be going on the Topamax Monday and am hoping I don't have the "ders"--but I had them at one time with the Lyrica and they subsided. The good thing about Lyrica with me it that I did have the pain relief that allowed me to do my job (I do merchandising) so I am hoping the Topamax will keep that end of it up! I ended up having to up my Lyrica back up yesterday (I was down to 1 150mg pill at night and I felt like poo warmed over)...have to wait until I can get the Topamax so I can go up with one and down with the other....You may or may not have any problems with the medications...everyone is different...

    Sorry this isn't an answer to your question, you just have to experiment with different medications to figure out what works best for you...

    Take care and I hope it all works out for you {{{{Gentle Hugs}}}}

    Cool
  11. tonakay

    tonakay New Member

    Good luck to you Cool, I know I definately don't want another drug that causes weight gain. Weight gain causes me depression and I have enough of that with the fibro!

    Keep me informed on how you're doing in your weaning off and how the topamax is working.... Wishing you great success!!

    Hugz,
    tona
  12. waveking

    waveking New Member

    Befor I went on Topamax, I could barely move because of body pain, and my migrains were killer. After about 2 months they became bareable and my neurologist continued to gradually increase the amount. I take 200mg in the morning and 200mg in the evening. I tried taking Lyrica in conjuction last summer, but didn't notice any improvement, so we stopped. Without Topamax, I wouldn't have a life because of Fibro. There is a little of the dumbing down, but without there were allot of fogs, now I have fewer fogs and the intensity isn't the same. What a major difference, I was at the end of my rope when the doctor prescribed Topamax.....I hope it works well for you.
  13. Tibbiecow

    Tibbiecow New Member

    Hi, I was on Neurontin a couple of years ago for migraines. Neurontin is similar to Lyrica, which I may try if the Mirapex doesn't help. Neurontin was REALLY helpful for fibro's 'inappropriate pain', ie things that should not hurt but do. I would love to go back on it, because it completely changed my pain threshold. I slept well, and could do lots of things that had been painful before. For instance, when freeze-branding our cattle, I could hold the brand on (you need body weight/pressure to do this) without whining or padding my gloves thickly. I had to go off it when it began causing dreadful non-migraine headaches. I have tried 3 more times to get back on it, and always the headaches. Sigh.
    My experience with Topamax was dreadful. At the time, my income qualified me for free medication, so that was no problem- otherwise the dose I was on would have cost $1200 EVERY MONTH. I tapered very slowly up to 200 mg twice a day, that took 2 months. My appetite changed a little, and I had some tinglies in my hands and feet which diminished over time.
    By far the worst two problems were the inability to think straight, or even at all, and suicidal thoughts. Read through the fine print, suicidal thoughts ARE listed as a side effect. It is very odd to be not suicidal, ie I did NOT want to kill myself, but I had thoughts about killing myself. I tapered off and came out of a stupor I didn't even know I was in. I can't believe that I was driving cars and tractors. I also can't believe that I met a pharmacy employee (not the pharmacist, though) who was on Topamax for migraines and said she had trouble thinking. Yikes! I know this med does work well for some, but PLEASE have someone monitor you very closely if you try it. I haven't met anyone taking this who didn't think the name 'dopey-max' wasn't right on target.
    Tibbie
    [This Message was Edited on 03/25/2006]
  14. now.....and it wasn't until about 7 months ago that my hair REALLY started falling out...I NEVER even suspected topamax, until I saw another post where someone said that as soon as they started topamax their hair fell out, and when they stopped, so did their hair loss!!

    So, I looked it up...and continued finding posts about this, though, hair loss is not mentioned as a side effect, and my neuro, pharmacist, primary doc, integrative med doc, pain doctor, all who have become concerned about my hair loss, have never mentioned this Topamax-hair loss thing. GRR. They may not know. I'm making an appointment very shortly with my neuro whom I haven't been back to see in over a year, to get off this med.

    It was good for me, for my facial nerve pain for a while, but, it is no longer helpful at all, I take a lot more meds for it, (one *was* Lyrica, until bad badddd muscle twitching & jerking, & vision problems, :-( that worsened with dose increases until absolutely unbearable and scary! @300mgs)
    My liver enzymes are now high, pancreas enzymes are elavated, and my hair, which has been falling out all along,
    falls out by the handfulls all day long, pillows & bedsheets covered in it, my poor doggies even get it in their mouths, :-( and I'm constantly pulling it from them,

    I'm always feeling like I've walked through spiderwebs, but,....it's my hair falling onto my arms... have to clear the tub drain every time I shower, clear my brush out every time I use it... It kills me, and it's only gotten this terrible in the last 7/8 months. It was falling out, like I said, 2 yrs ago, or just under that, and my GP said "male pattern baldness," but, I thought, well, my thyroid med will help, I hope" but, it was not anything like this!

    Now that Topamax serves absolutely NO purpose, I've found many others that lost hair while on this med, and my liver & pancreas enzymes are elevated, my neuro will NOT tell me, that he's not going to take me off of it, there's just no reason for me to be ON it. He will have to try something else. My liver enzymes & blood sodium levels/trileptal levels were the reason I had to stop Trileptal when I was upto 1800-2100mgs of it. *sigh* the troubles we must go through just for all this nerve/fibro pain!

    Good luck to you I hope you can find the one that best suits you...

    Before 7-8 months ago, including when I *started* Topamax, I had not a single problem, and up until recently as well, I didn't notice weight or other problems....it's just now* really hitting me, and we've not messed with my dose in over a YEAR,

    Take care, Laura
  15. Cool_Beans

    Cool_Beans New Member

    I am so sorry about your hair loss!!! Mine has went from tight spiral curls to almost straight barley a wave...I looked it up and saw that all anti-convulsants mess with your hair in some form or fashion. I am on two now *YIKES*...

    Take care and let us know how it goes with the fight to get your doc to change your meds!

    Gentle hugs,

    Cool
  16. Shelbyeatenton

    Shelbyeatenton New Member

    I am on Topirimate for epilepsy and have been for about a year and have had no side effects on it so far. Touch wood. :).

    The topirimate hasn't improved my FM with stunning effects apart from that it seems to have reduced my headaches somewhat. Perhaps a coincidence though maybe?

    However, it sounds like i may be on a lower dose than others as i am on a combination dose with another medication for my epilepsy. I take 100mg a day.Could that explain why no side effects? not sure if thats how it works?

    I started taking Lyrica on tuesday and am feeling very "heady" and am having trouble retaining any information, that is probably the best way to describe it anyway?! It is making me very drowsy! I think perhaps the side effects will settle down a little given time. At least i'm hoping so anyway?!

    As far as i know though topirimate is only licensed as a Anti convulsant and a migraine medication?

    Shelby
    xxx
  17. Cool_Beans

    Cool_Beans New Member

    I take the Topa for migraines, but it seems to be boosting my Lyrica at this point (except that now I am losing weight instead of gaining). The side affects do subside--but it may take time...the woozy, party head will go away in a couple three weeks--or it did for me, but the memory stuff will take a little longer. Mine lasted for 5 months and then poof it was gone. NADH, Trace Minerals and Vitamin C are all suppose to help. Hang in there and let me know how it goes!

    Gentle Hugs,

    Cool
  18. tonakay

    tonakay New Member

    Thanks everyone for all replies.... now I just don't wanna take anything, seems like all the side effects are worse than what I'm trying to get rid of!

    Thanks again,
    Hugz to all,
    Tona
  19. jake123

    jake123 New Member

    But I don't think I could maintain my job, maybe even my marriage.
    I was such a wreck and went looking for help so I could function and doctors helped me by putting me on some meds. And I am where I am today. Working, teaching, helping kids, not cleaning house much, taking meds daily. We do what we have to do to function and get by.
    The Topamax helps a great deal but it is not perfect for me. I've had a medium grade headache for two weeks and had to stay home yesterday. None of my meds are working for the headache. I feel hopeless right now. But on Sunday I can start my next round of Relpax.
  20. dragon06

    dragon06 New Member

    I started taking Lyrica about 5 days ago. So far I have not had very many side effects which I find kind of weird cause I am usually side effect queen but I have been pretty good so far (knock on wood). I figured I would give you info on how things are going for me. I am currently taking 50mg 3 times a day (150mg total).

    Side effects so far:

    - some dizzyness (this has gotten better since Day 1 and is almost completely gone now)

    - A little more tired than usual (this is clearing up as well)

    - Mild feet/hand swelling (not enough to bother me)

    - Occaisional foggy/lighthead but it's not often and getting noticably better

    Good Effects:

    - has definitly starting reducing some of my pain already

    - I sleep much deeper and longer now (still takes me a bit to fall asleep)

    - It has made a significant difference on my stomach problems! I used to be nauseous 24/7 and barely able to eat but it has made a big difference in this department. I also used to wake up very sick to my stomach and it has made that time more than bearable.


    So far the pros outweigh the cons for me. I have noticed that as long as I keep with the dosage that the side effects seem to be going away. Even if I had the few side effects all the time I would still keep taking it (as of now) because it offers me more good.

    Just wanted to let you know that not everyone gets all the bad side effects and that they do start to get better once you have been taking it a bit.

    I know that it is expensive. I qualify to have it covered by the drug company. I also know it's possible with some insurance comapanies to get it covered under if the correct forms are filled out with the insurance company and the doctor initiates it saying you require this med. It's worth looking in to if the med works for you.