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667923 tn?1421466324

Taking Lyrica and blowed up like a balloon,going to try TOPAMAX

Hey to all,
     I am so miserable and bloated that I can't breath. I have been on Lyrica for 2-3 yrs. It works great for the nerve pain, but then you get so huge that my size 4's  are now size 16's and really 18 and I am tired of it. I HAVE PUT ON 60+ LBS...WOW.
      I heard of this medicine called Topax, it is for Fibromyalgia,nerve damage and it actually causes weight lose..finally. I am going to ask my doc. Mon. for it and give it a try. I wonder if you can tapper off of Lyrica and take the Topamax at the same time. I have been on 150mg. of Lyrica for so long that I take it every 6-8 hrs. ..no joke, my pain is so intense. I can tolerate pain well, but this is ridiculous. I also just found out I have a Chiari Malformation and am sure a lot of my pain is from it. I wonder what you take for that...(heavy sigh...great more meds) I might  have to have brain surgery. That sounds inviting...hmm!..
      I am on Fentayl 50mcg.,but they want to bump me up to 75mcg and I didnn't want to, but I had to try something because my pain is through the roof. I asked if they would just change my breakthrough meds because I am just getting an immunity built up to them. I have been taking the Norco 10/325 for 5 yrs.(they put me on them right after surgery because of the pain). I think this would be the perfect med. balance for me and that would be to stay on the 50mcg. patches, tapper off Lyrica and start Topamax for Fibro and for the chira malformation headaches, go down on my breakthrough med of Norco 10/325 to Lortab 7.5 and have to stay on my 1mg. Xanax for all the spasms/tremors..unfortunately...but that I think would work. I hope my doc sees it the same way.
     Have you guys heard of Topamax?  I have been doing some serious reading and it sounds great. You don't have the weight issue that you do with Lyrica. You ought to give it a try. I know I am ...Lord Willing. I think he would do that for me since I just can't breath. I asked for a fluid pill so I could try it and I didn't get it and I don't undestand that. He seems to think I have an infection in which is possible since i do keep nasal congestions and some in chest.
     All of my weight is right underneath my breast area and I can't sit for long periods or stand long either. I just feel like I am smothering. If I just try to lay back but elavated I can stand it and then I get depressed because that is all I can do and just try to sleep in which is almost impossible with nerve damage. It decides when you sleep unless you take something to sleep. I checked on Elavil and didn't like the side effects at all. I can't remember at the time just what there are, but I remember they didn't sound to hopeful for me.I will check it out again and get back with side effects and look at it again. I don't sleep and my husband is always telling me that I need to sleep...yeah...it would be nice. When I do I only get 30 min. to an hour and if I am lucky I can get a little more. My doc doesn't want to give me Klonopin in which I have taken before and it seemed like I did sleep more. I hate to feel like I depend on the Xanax to sleep, but that is all I got. I can't take flexeril because if makes me barf. It just doesn't work I guess it is with the mixture of what I am taking, but the Klonopin .5mg was really nothing and it worked. Maybe he will this time when I ask him @ it again..or should I? I just want to have a normal life and enjoy some things with me son...like going to his ball games or watch a good movie with him without being in agony.
I will check back to see your views on Topamax if anyone has tried it. You take care and always GOD BLESS
16 Responses
Avatar universal
I know this girl who just started taking Topamax for headache relieve and in less than 2 months she has already lost 32 pounds.

I couldn't take the Lyrcia, beause i felt as though i wasn't breathing right on it, and my hands and feet swelled up so much like a balloon. it made me scared.
975514 tn?1325001538
Hello and welcome,
I used to take Lyrica (an anti-seizure medication) for intense fibromyalgia and nerve pain and had very similar side effects that you speak of. I put on weight and became extremely lazy. I chose to switch to Topamax and have been taking it for over six months. I have lost about 25lbs since I quit taking Lyrica. (I did take Neurontin in between the two medications and lost about 5lbs when I switched to that one.)

There are a couple of major differences you should realize though before switching to Topamax though.

*It is FDA approved only for Migraines and Epilepsy, so if your doctor doesn't code the prescription correctly, your insurance may not cover it. If they try to code it for "chronic pain" or "Fibromyalgia" it could get rejected.

*It was first a very strong Epilepsy medication used to treat the worst types of seizures known as "grand mals" or tonic clonic," so the medication is very potent. Lyrica and Neurontin are anti-seizure medications too, but they are only useful as adjunct medications if used for Epilepsy, which means it has to be couple with something else to work on grand mal seizures.

What does this mean to you? It means that Topamax may have more initial side effects in the beginning of the therapy than Lyrica or Neurontin.

*Many doctors think that Topamax is just as tolerable as Lyrica, so they might start you at a high dose right off the bat, which is a HUGE mistake!!!! The typical dose for migraines is 100mg. The best dose for nerve and Fibromyalgia pain is between 150mg and 200mg, but you can't start at that dosage. Topamax must be increase in doses of no more than 25mg per week to avoid side effects. If this is done, the medication is a highly effective, highly tolerable option for migraines and pain and you want to let your body tell you where it is working at it's most optimal dosage too because everyone is different.

The most common side effects I had went away in about 6 weeks. They were insomnia, tingly fingers and toes, and loss of appetite. I also had a little bit of confusion for about 2 days on the days when I would increase my dose. This would pass quickly though. Also, soda tasted flat for about a month, but that too went away and now it tastes normal. I hope this information helps you. Feel free to ask any more questions you might have. Thanks.
681148 tn?1437665191
Good information about the insurance coverage and Topamax.  The neurologist hasn't decided to try Topamax as of yet, but since I have migraine disorder, he can certainly label its usage as such since that's what he is treating me for.  That's not where he is headed yet, though.
667923 tn?1421466324
     I want to thank you for you information on Topamax. I sure hope that my doc puts me on it. I am so greatful for the help he has given to me already. It sure is hard to find someone that will take care of you these days. I went to a NL @ two months ago and he run a few test like a CT Scan of head and an MRI of Lumbar, also EMG's of ams and legs. In the CT it showed what was called a Venous Angioma, in which he said I was probably born with but it still creeps me out.
Hey guys I didn't realize the time, gotta go to see Dr. this afternoon. Got to get myself together. I will be back to continue our discussion.
'                                          Thanks and always...GOD BLESS..Karen
975514 tn?1325001538
There is one thing I should mention though. Not everyone loses mass quantities of weight on Topamax. Some people do not lose at all, but the nice thing is that most people do not gain while taking it. If you have healthy eating habits your likely to lose more. Good luck to you and let us know how things go.
Avatar universal
Get off Lyrica, it's awful and that pain patch has so many side affects.  Topamax is wonderful and a side affect is WEIGHT LOSS. With diet and exercise I've lost 20 pounds while on it.  Being a chronic pain patient suffering years with FM I've not been able to lose any weight until topamax. I've taken Lyrica, fetanyl, and just about any other pain med you can think of. There is hope so hold on and take that topamax. Helps head aches, some nerve pain and great side affects.... Best of luck
667923 tn?1421466324
     Thanks so much guys for the info. I am scared to start a new med. It just seems like I am on enough already to treat a cow..oh..wait a minute..I am a cow..lol..I have gained 80 lbs...that is what the scale said and the scale don't lie. I used to weigh 105 and it is unbelievable how it is on me now and I can't breath good.I am so miserable and do hope that this Topamax will help me get it off and that is with good eating habits. I told my husband not to bring anymore of those turtle pies in or any sweets for that matter. If he wanted them he was going to have to hide them..:)

     I am so glad I am where I feel comfortable talking to people who understand what I am going through. It has taken my mom so long to realize the seriousness of what is happening to me. I had an aunt that abused med. when she was younger and as a matter of fact she still has a prob., but I told my mom that is her and not me. I am very sensitive to med. I hate gas at the dentist office. It is like I fight it or something.Speaking of dentists..I had 3 teeth filled last wk. and @ 3 days later I had a pain in my temple area. It felt like someone come and hit both of my temples at the same time. It literally scared me to death. Has anyone had that happen. He did say that he had to drill deep on one,so I hope he hasn't hit some kind of blood vessel or something. Apparently not..I am still alive..:)
      I have a hard time taking 1 1/2 pain pills if my pain is off the charts.I usually have to lye down right afterwards since I can't stand the feeling. I could never abuse medicine and can say that with a honesty. I am glad of it and I think I finally have got my mom to see that. I am sure glad of it for she has given me a hard time of it and if you're suffering you sure don't need someone breathing down your neck and bickering..Oh well that situation is better.
     I was wondering @ the Lyrica. I honestly hate the med., but it does help me and my doc. in which is a DO and I think that is doc of Osteopath. I don't really know what that is and will look it up, but I think it has something to do w/bones. Anyway, I told him that I wanted to get off Lyrica and take the Topamax and I was telling him how I had tried to slowly go down in mg. to get off it and try to start Neurontin before, but couldn't get down to that one day of 75mg. the pain was so severe and he said that I could take them both together. That was not what I was going for, but for now I might have to, to just see how the Top. is going to do for me. I sure hope I can get this fluid retention off of me and I don't understand why he hasn't offered to give me some kind of fluid pill. Why is that?Do you know why he wouldn't offer of is it that I have to ask for that too. I have to admit that I live in such a small town there is not but two dr. here to treat everyone. He was so bogged down today that I can imagine it is hard.
     I also wondered when is the best time to take this Topamax...is it better taken at night?I haven't taken it yet..scared..I don't know why since I wanted to try it so badly..I just have to get the courage up...so is it better to take before bed or in the morning?..oh, he gave me 25mg. and I feel at least he did say that he had other people that he prescribed it for.So maybe he does know something @ it.
      I feel just like I did when I got my first 25 mcg patch. I was so scared to put it on and didn't know what to expect. I kept calling my friend who was taking the 50mcg. at the time and he told me to put it on and just relax. After the third call..lol..he told me to lye down..take a xanax and just relax after I put it on. It worked for my pain and was so glad to have some relief...it's just now I am so tired of it and I know that when that third day comes and I can even forget that it is the third day, but sure enough that pain will remind me.
     I just wished I knew exactly what was causing all my pain. I went to a NL two months ago or so and he seemed to be the one who was going to access everything and tell me what was going on. He sent me to get a CT Scan and found a venous angioma(told me not to worry that it was something I was probably born with...it still scares me to know it's there). He also found that I had Lumbar DDD after doing an MRI, but it stopped there. I called to make another appt. because I fell in the kitchen..and that was after standing at the counter and it was holding me up..I fell asleep...I don't know how I have been doing that only to account it to not getting any sleep..I guess. Anyway, I fell right down on my bottom. BAM,but he wouldn't see me again. The receptionist said that he had done all that he could for me..what? I have only seen him 2x..I know what it is @ and it is all @ Medicaid. That is ridicuous..I am going to have Cigna next month and hope I am not making a mistake because just went in for Disability Court @ two weeks ago, but that shouldn't make any difference right? You don't get the Ins. part I heard for 24 mos.and by that time I could be dead..hope not. I am not doing well though. I can't breath..course that might be the weight or most of it. I have pain that is so unbearable at time that I really think that I am dying and I can tolerate pain well. So, he wouldn't see me again and he did send me to a NS and he wasn't any better because he told me that the surgery that I had shouldn't have been done that it was a small insignificant disc herniation..He also said he wouldn't have done it and there is nothing that I can do @ it. That all sounded good...I literally cried right there in his office. I am such an ambitious driven happy go lucky person that it just tore a hole in my heart, but I bounce back...GOD has me and has carried me many times. ON that note and all the letters I have put on this page I will check back on you guys and thanks again. If you have any additional info, let me know, I will take your advice..
You guys take care and always...GOD BLESS...Karen
975514 tn?1325001538
You have definitely been through a lot. You also brought up something I was just thinking about- times of day to take Topamax. Everyone's bodies handles the med differently. Some people get fatigued from it, other people get energized. I recommend to those who get energized, to take your doses in the morning and afternoon, but not before bed. For those of you who get tired from it, taking it at bedtime is ideal. Have a talk with your doctor after the first week or two of taking it. You will know which category you fit into pretty much right away.
Avatar universal
First of all, what are you taking for depression? Your picture is beautiful, you are young and we have to get you through this.  Please try the topamax.  You take it in the morning to start off.  The doctor will have you take it that way for a week then you will increase to two a day.  I have not experienced any side effects and I am SO sensitive to every medication.  When were you diagnosed with fibromyalgia? Did something physically or emotionally happen prior to the diagnosis of FM? As for a water pill, don't think there is a pill for everything. How much water are you drinking. You need to be drinking 98 ounces or more per day.  Get a great water bottle and have it with you at all times.  Drinking water will flush excess water out of your body.  And even though you are in pain you have to get up and move a little each day.  That too will help.  The foods that you eating and what you drink can also be adding to your pain.  So much of what we eat and drink can make FM symptoms worse.  Sugar, simple carbohydrates like cakes, breads, brownies make FM symptoms horrible.  If you really want to get well please look at all of these things. The doctors do their part but so much of getting well is on the part on us.  I learned that the hard way through my diagnosis of FM. I was diagnosed when I was 32, I had a baby and an 8 year old and a career and husband. I said Ok it fibromyalgia, what now. How do I get over it, what pills do I need to get well. This was 1992, the doctor looked at me and said "well we don't know."  After about 20 doctors and years of pain, crying, pills, missing work, 7 surgeries on my spine and finally disability I came to the realization I had to be my own researcher and advocate. I found I have candida-it's yeast throughout my body. I had thrush as a little girl so I've had it that long. Sugar makes it worse, yeast can create all kinds of symptoms like pain, aches beyond belief. The foods and what we drink make yeast problems flare up to a point we can't move.  Have you ever had a doctor ask you about that? Me either. I figured that out on my own.  The other thing is are you own any thyroid medication? if not you should be even if your thyroid numbers come back normal.  Thyroid meds help FM pain and symptoms.  I met a doctor years ago, he recommended 2 books: "Life Without Bread" and "Solved, The Riddle of Illness" and he prescribed a low dose thyroid medication.  Those 3 things helped me so much.  So there is so much you can do to help yourself.  Your mother seems worried about you, if she is able ask her to be your advocate and help you. Tell her you want to get better and figure out what you can do to  get better.  I wish you the very best.  Pain is a difficult thing.  It keeps us so stuck at times.  I have found that it often becomes our identity and it's easier and safer to hold on to it.  It becomes a way of life.  Don't make it your way of life.  You may always be in pain like me. But there is more to life, try to find out how you can have more in your life.
667923 tn?1421466324
Thanks guys for posting to me. It really helped at at time when I was feeling so low. I have had a headache all day and think it could be the Top.,..do you think that is what it is? It seems to feel like a spinal tap or migrane...you know how it can ease up some then hit you with a vengence. I just took two motrin @ an hr. ago and am afraid it is going to come back again like it has all day. I have had to take motrin during the day all day..and i normally don't have to take any motrin, maybe one or two a month for a headache. I will try to answers your questions when I come right back. I fell asleep at comp. and I hate when I do that. I took half a xanax thinking maybe I would just go to sleep for a little while...yeah, just a little while since all I sleep here lately are @ 2-4 hrs., if I am lucky. Hey, I will be back I promise. If you hang in there for just an hour or I wll get a message out and yall can get back to me tomorrow and that will be fine. It's just me and my mom have this prayer thing we do every night and I love it and I truly think it helps her. She tells me that she wishes she could pray like that and I tell her mom you can ...you just have to put your heart into it to God. He fills me up when I pray and I feel so close to Him...so I am gonna go for now and we will take up where I left off..Hey, Thanks again you guys for your concern ...May GOD BLESS you...He will..Karen
visit my blog..it has a lot @ my life on it and I have pics of my family. Going to add some of my mom and dad soon, but it does have my "little light"...lol..that is my youngest son. It also has my good looking Italian...wonderful ...loving...helpful...I don't know what I would do without Hubby...Thanks again guys and I will be back after the prayer...K
667923 tn?1421466324
I just wanted to tell you guys that I took it for a day and had a terrible headache for two days so stopped. I waited for two days and realized that I had to give it another try. I took it for two days and felt so much better. I felt like I had even lose some fluid in my stomache area. There was one prob.,I read where this woman lost her site bc or it. She only took it for 11 days. My hubby told me that he thought I shouldn't take the chance of losing my site and talked me into quiting it. I hate that, but I do have to say my feet swoll up elephant looking feet. I couldn't tell if It was all the good Thanksgiving food and especially all the pie that had caused it. I wondered if there are any of you that had the swelling issue..I want to take it, but I am scared. My hubby is dead set against it and I would have to take it behind his back and I don't like that. Man....I felt so much better on it and I want to take,but don't know what to do. HELP...guys;bb amd check later going to sleep at com. and had a bone scan today, blood work yesterday..just tired..Take care and always...GOD BLESS...Karen
975514 tn?1325001538
I am sorry to hear about the headache. I've got a bad one right now too (weather change in my area). In your case, it may have been a side effect or it may not of been to the Topamax. It's hard to tell. New medications always take time to get used to and Topamax is not one you can start and stop. You should make sure to take it every day at the same time if you can. Unless I am allergic to a medication, or it causes a horrendous side effect, I like to give my medications at least 4-6 weeks before I chose not to take them anymore. That way I know for sure what the pros and cons are before throwing in the towel.

With every medication you put in your body there are always risks. On TV you see the commercials for the medications and at the end they give you a big list of possible side effects. Some of them are pretty scary! Just because some people get them doesn't mean you will- in fact if everybody did get them, they probably wouldn't be FDA approved right?!

There is a very rare risk of developing secondary angle closure glaucoma. This is probably what you and your husband are worried about. I wouldn't worry about that too much. Just be aware of it. I was concerned about the risk too, and even went to see an eye doctor. He said that he had never seen it in his patients who were taking Topamax, but knew about it. If you follow the instructions on your prescribing information and report any alarming symptoms to your doctor if you experienced them right away, I am sure your vision will be fine. Don't fret.

Also, the swelling you mentioned is probably not caused from the Topamax. Topamax tends to flush fluids from your system, not hold on to them. That is why it's good to drink a lot of water if you plan on taking the medication. Let me know how things go. Good luck to you.
667923 tn?1421466324
Hey dustybrown,
     How ru 2 day? I am feeling bloated and am in a state of shock and confusion. I have the results back on my bone scan. Since I live in a little town it makes me not want to believe in what was  told 2 me @ my results. First, it was strange when I got to the docs office. When they called me in they ushered me into a different room or area as normal. It was a little room right in the doorway almost. The nuse came in and told me that the doc had an emergency and wouldn't get to see me.I wasn't shocked, but it was a first. I told her that I mostly came for my test results,then I needed my pain med. filled since it might run thru until Sat. and didn't want to take the chance, then I told her I wanted to switch from Lyrica to Neurontin bc I was swelled so bad that I couldn't breath and it seemed to just keep increasing at an alarming rate. I also wanted to get my meds run thru tel-drug so that they wouldn't have to see this ugly mug every month. She left and in came the NP who I had to explain it all over again, but when she left I and after she told me my results...I was shocked and didn't know what to think. She told me I had something called Hydronephrosis of the kidneys, a fractured rib(she said it was an old one...hmmm),and that I had Degenerative hip/joint disease. I didn't hear anything in there @ my neck or my back and couldn't understand bc I hurt there so much. I got home and looked up the Hydronephrosis..and it was pretty scary..I could even have a tumor..man, I have been pretty depressed @ that. My dad had colon cancer back in '84 and I knew that I could be a candidate for it. I have an ultrasound of my kidneys Thur. I don't know how I got the fractured rib...I feel last month, but she said it was an old fracture. I can't imagine what the Degenerative hip/joint disease is all @. I haven't even felt like looking it up. I do have a pain in my right side and have for the past few wks. It feels like it is in my liver area. Man, I hope those Norco that I have had to take for my pain(has acetomenophin in them)hasn't caused my liver to have probs now.
     As for the Neurontin he wrote it out for 600mg. Isn't that a high dose to start out at? A friend of mine takes the 300mg. and I don't understand why such a high dosage. I wanted to at least go down on my Lyrica(to the 75mg. a day)and it is strange bc last month he was explaining how to take the Lyrica when trying to get off and he told me how to lower it and all then just give me this. I don't understand. OH...and that emergency..I left my room and decided to weigh mysel(192 now...man)and I saw my doc walking slowly into his cubby hole. I had to ask him at least one question. I walked up to him as just to say...not out loud..".where's the fire" ...he was just standing there sipping on his cup and I asked him @ switching over to that mg. of Neurontin straight from what I was taking I guess that is what he intended since I didn't get even 5 min. w/him...I just feel if it was an emergency he wouldn't have still been there. I am going to a new doc...an internist Mon...I am sure glad I made the appt. a few wks ago.
     @ The Topamax..I am glad to hear it. I might just get him to write me a pres. for 75mg. of Lyrica and slowly get off them while I start back on the Topamax. I should least give it another try. If it doesn't pan out then I have the Neurontin I can get on if my nerve pain is really bad. I have only had 2 today and am proud of that progress since I was taking them every 6 hrs.
     Thank you so much for you advice and listening. Tell me what you think of everything..I hope in a way that the new Doc(internist-if can)can take over my meds..Can they..do u know?
     Take care and getting tired..think I hit the hay. Had a rough time of it, It is hard for me to breath and hurt in right side. Say a prayer for me please and I will do same 4 U.
     GOD BLESS...Karen
975514 tn?1325001538
Thanks for keeping in touch. It sounds like you had so much to digest over the past day or so. You must be so overwhelmed. You are doing a great job handling everything though and I am glad you are staying optimistic. I am sure you are scared  with your new diagnoses, but hang tight until you are able to speak with your doctor. Don't do too much browsing the internet. If you're like me, you'll get yourself all worked up and things may not be as bad as you think.

When will you be seeing the internist? On Monday...I think it makes sense to have one doctor be in control of ALL of your medication if you can. That is how I like to handle things with my meds too. My Primary Care doctor is always offering to refill my scripts, but I always tell her "No, I'll have my Rheumatologist handle that." That way, number 1, the doctors don't perceive you to be drug seeking and number 2, there is less of a chance that your doctor will accidentally over-prescribe medications or prescribe medications that interact with each other. It's your best bet.

Take the rest of the weekend to rest and take care of yourself. Keep in touch and let us know how the appointment goes on Monday.
667923 tn?1421466324
Hello dustybrown,
     I agree with the one doc prescibing the meds. I sure don't want to be perceived in that way. It is sure to be circulating anyway though. Not much you can do @ people's tongues, in which is a shame. I am very careful @ my med.. I put mine in a little round pill holder that they used to use I guess back in the old days...lol..It is rather cute and small..I put just the meds that I need the next day in that every night so I can keep up with it better. I always have a lot left. I don't take it right. I guess you can say I chase a lot of my pain. I am doing better though. My PCP prescribed that I go up on my patch, in which I was hesitant. I just wanted to change my breakthrough pain med to something I was building an immunity on. I thought he would do that, but he would rather raise my patch? I didn't understand...but I guess it's something to do with narcotic something or another. I do understand I guess. I am doing better so I probably did need a raise. I tried it last summer with my doc before I moved here and I told him that I had to go back bc it made me too nauseated. I guess with the 80 lb. put on I could take it. I am so scared of it though. I didn't want to raise it bc then u have to come off it.
     I go to get an ultasound Thur. for the Hydronephrosis...boy that's a long word and I bet it comes with a big package to back it up. I hope it's not too bad. I beat u to the punch and already did some research on it. I didn't know it could possibly be a tumour bc my dad had colon cancer back in '84. I sure hope it is not that, but I did have a colon scope run 5 yrs. ago and everything was fine then. If it is maybe it hasn't grown too large or gone where I hope it doesn't. I also had Endometriosis and had a fibroid removed during Hysterectomy back in '99...so I hope there is nothing there either..Just pray..really having faith and praying is all we need..If it is the Lord's will there is nothing we can do @ it. I will be alright. I have faith. I pray a lot too. The Lord and I talk all the time. I keep in close touch with The Big Man Upstairs...way tooo important.
     So, how ru doing? We haven't talked @ u. I will check out ur profile, if that is ok and see how things r going w/u. I know we must be there for each other and help in any way that we can.
     You take care and always GOD BLESS...Karen
Avatar universal
I don't know the answer but I do know I've dealt with that inflamed nerve for maybe 30 years. Have a chiropractor check to make sure the vertebrae is not putting pressure on it, then Ice it , heat it and repeat.  The heat will loosen the muscles around it and the ice will reduce the inflammation.  Good luck.
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