[tshadow]

I took Lyrica for about 8 months and Topomax I tried and failed, and now I take 50 mgs. in the AM and that's it. I do NOT increase that doseage, and if I suffer from it, I will stop again.

For me, these two drugs were / are the "Twin Devils." I highly warn anyone taking them to read the full list of side-effects and be aware!!!

I did not know side-effects as at the time I was so sick I just did what my doc said...

Lyrica. Within three months I gained 50 lbs. At six months - when I had NEVER EVER had any high blood sugar - my sugar went to 500 and stayed there. I lost my eyesight - almost to the point of total blindness - couldn't read, couldn't watch t.v. except for sound and big blobs on it, couldn't see faces and certainly couldn't read emails or check this Board. And, no relief on pain - in fact, more. I had kidney pain and it was really bad. So I stopped it and lost 60 lbs. in about 6 months with ease. But the blood sugar stayed at 500 so I started having ER needs, and it was all Diabetes, so now have it regulated by twice daily checks and oral meds 3x day.

Topomax. Most people know this story from a couple of years' ago. Started Topomax and felt some relief at first. Lost 20 lbs. Couldn't sleep. Doc said to get up to 125 mgs. per day. At 100 I kept having manic-depressive episodes where I can't even remember days of no sleep / talking / walking around, then I'd crash for days of sleep and SEVERE depression. This drug affected my speech centers, making me sound drunk or high when I was NOT, and my family (after two episodes) assumed I was abusing my meds and turned on me. It was all the Topomax, and close family knew that, but again, it was humiliating for others to view the effects of Topomax.

The docs have not agreed that either of these meds caused me any discomfort or problems...

But I KNOW this to be true, and others have privately agreed with me, so I want to WARN newcomers to be so careful with any new med, and especially if they are prescribed these drugs, to watch for the danger signals.

I put this out with love and concern.

[hairdresser]

I tried Lyrica summer of 06 to Dec.06, It made me soo. tired and didn't take care of the pain. I tried Gabapentine this year from May until Sept. this didn't agree with me at all. My speech was slow as well as my train of thought. I was very forgetful and became depressed and had nightmares and began getting hives when my doseage went up from 400 to 600 mg and fluid buildup in my ankles and face. I didn't like the way gabapentine slowed my down(mind) at first I found it really helped with all the burning pain, but in the long run the side effects were not worth it.

[tshadow]

I like that we are discussing problems we've had with meds.

I've been on oxy for three years now - same doseage. At first, it did help with pain, but rather quickly it stopped, and then a strange phenomenon happened. Oxy causes a pain cycle in its own cycling - so several times a day my pain goes up and down within the doses. I've been trying to get detox for the last year, and every time they approve a program, I am determined to be too disabled for their program. So now I have to wait for the chemical over-night detox. We may have to bring it to a court hearing.

But I think we should share warnings about meds as we have a lot of wisdom on these things.

[sandy1955]

Tam,

You are now on 1 dose 50 mg. lyrica a day? That's the way I read your message, is that right?
Well if that's the case so am I. My best friend started on it a long time ago and I still have the side effects stored in my favorites. I didn't want to tell her at the time how bad it was and scare her cause we had both tried neurontin and could not function. She told me the other day our pain management doctor put her on lyrica again and she's like what in the hell is wrong with me after a day or so. She had simply taken the pill without checking the dosage. He had started her on 300 mg. 3 times a day. ( of lyrica!) can you imagine even staying awake with that dosage even once a day? I may be the last person in the world that still does this, but I read the info that comes with my script before popping something in my mouth!

[Bi-Coastal]

OMG! Tam,

That is unbelievable, as is the response of your physicians.

In my experience, I gained a lot of weight on Neurontin, so my Doc tried me on Topomax.

After about three days of anxiety and inability to sleep, I called my Doc and informed him that I was going back on Neurontin. That is the only RX that does not seem to interact with the other stuff I take.

I also tried Oxy and, not unlike you, found that it brought on horrible RSD attacks almost nightly. Again I announced that I would no longer take it.

There are a few other RX I have tried, (sorry...can't recall exactly which), but all were for pain relief. Some caused swelling in the legs and another caused extreme and sudden cramping in my calves.

After about three days to a week, I refuse to continue with anything that so obviously causes such side effects.

Fortuneately, I have never suffered from withdrawal symptoms, even on Morphine and other 'controlled substances'. I am just fortunate that way. My Docs are always surprised by that.

Yes, I am overweight, but my pain is controlled for the most part. My list of RX is long and includes muscle relaxors, Kadian (time release Morphine), Perkocet, anti-depressants..(KEY), and so on. I have many secondary diagnosis brought on by TOS.

I monitor my max allowed, by setting it out every evening for the following day. When I take may doses in the afternoon, I must take a nap. I cannot drive for a few hours, my speech is slurred for about an hour and I dare not go up and down stairs.

This is not how I would like to live, but I know things could be much worse. I still have my 'days', but it is tolerable for the most part.

Tamera, I hope your devastating issues are slowly, but surely resolved and that your quality of life is so much better than it has been for SO long. My heart goes out to you.

I think your post is good warning for us to listen to our bodies any time there is a change of meds. We are all different and the Doctors cannot possibly KNOW what our individual reactions may be. You MUST put your foot down within a SHORT period, of any adverse reactions, and always read the pharmacy literature.

The symptoms may not always be so obvious, but when they are, contact your prescribing physician and do not let him tell you otherwise!

Warmly,
Anne

[Rachael]

HI Tam,

I too tried topomax. First week I took 25mgs and second I got to 50. I noticed right away the feeling of being disconnected. Once I hit 50mg the feelikng was worse. Belly hurt...felt sad and very disconnected. I wasn't making much sense and it also felt like I was drunk or something. I went off it 3 days after hitting the 50mg. I was suppose to go up to 100mg, but tapered back off. It's been a week sicne no topomax and I feel better and clearer!! I will stick to my demerol. No other drugs for me!! (other than my demerol..pain dictates to me I need it)

Rachael

[tshadow]

Bump up. I still have diabetes from Lyrica. But, I am not now taking Metformin as I am seriously following a strict diabetic diet, and not cheating one bite. Haven't lost a pound, though. So I recommend that if you are on Lyrica, to get your blood taken at least every other month to monitor the sugar levels and be aware of what is normal (100 or less) and what is pre-diabetic and diabetic. And note, that although my TOS is work-related, the diabetes as a result of the Lyrica so far is NOT so I have to use either my own funds or get Medicare to cover any diabetes related treatment.

Very serious.

[JAMY]

I posted last week about how I am going to be trying Gabapentin and Topomax together to see if I can get some relief from pain.

Like others have mentioned I too gained weight on Lyrica and was quickly taken off of the drug. I then went back to Gabapentin and am currently at a dose of 2000mg a day which isn't relieving all my pain but as I up that dosage I notice the weight gain.

I tried Topomax before and lasted about a month...I felt foggy all the time and just didn't like how 'stupid' I felt. I do beleive part of this may be that my doc didn't perscribe the right titration of the dose. I will start on 12.5mg of Topomax for two weeks and then to 25 for 2wks, 50 for 2wks, 75 for 2wks and then a maintenance dose of 100. I was warned of the side effects - forgetting words, risk of Glaucoma, tingling in the hands in feet, etc, etc by my doc but the hope is that these will lessen over time. As I am not working right now the word loss thing doesn't bother me as much but I will be closely monitoring how I feel.

Has anyone else done Gabapentin and Topomax together?

This is a good thread - sharing stories and bringing to attention the side effects of meds is VERY important

[ozzy14]

Hi all,

I was put on Lyrica about a month ago. My Dr told me it was a "new" nerve / pain drug (new to Australia) . Ha 1 tablet was enough for me. I sat in front of the TV like a zombie for about 2 hours. Couldnt even get up. I found it annoying and difficult just to answer my husband and kids questions. Meds seem to affect me greatly even small doses. I think I will stick to the panadeine forte. After years of taking panadeine forte it's effect is not as good, but Lyrica scared me, it was like I was in a dream. The world revolved around me and all I could do was watch it. NEVER AGAIN! I was straight back to my old pan forte, heat pack, anti inflams and light stretches as soon as I could get off the lounge! I am soooo glad I dont have TOS as bad as some others on this site, I really feel for you guys.

Take care and watch those MEDS!

Lisa

[annhere]

I've been on Topomax for about a year....started at 25mg for about 2 weeks then to 50mg, then 100mg, and now I'm at 200mg.....but sometimes I change it up a bit, because it's the pits...sometimes I'll take more in the morning if it's controling my sleep to much or I'll cut back a bit, and then increase again.....I'm not pleased taking Topomax, but I know the others can be just as bad, and I've already gotten throught the worst part of it....Life would be so much better w/o TOS....


Ann

Originally Posted by ozzy14

Hi all,

I was put on Lyrica about a month ago. My Dr told me it was a "new" nerve / pain drug (new to Australia) . Ha 1 tablet was enough for me. I sat in front of the TV like a zombie for about 2 hours. Couldnt even get up. I found it annoying and difficult just to answer my husband and kids questions. Meds seem to affect me greatly even small doses. I think I will stick to the panadeine forte. After years of taking panadeine forte it's effect is not as good, but Lyrica scared me, it was like I was in a dream. The world revolved around me and all I could do was watch it. NEVER AGAIN! I was straight back to my old pan forte, heat pack, anti inflams and light stretches as soon as I could get off the lounge! I am soooo glad I dont have TOS as bad as some others on this site, I really feel for you guys.

Take care and watch those MEDS!

Lisa