Giving up on Neurontin!!

Jitterlegs · Post by **Jitterlegs** » Fri Sep 05, 2008 10:16 pm

I have been taking neurontin for over 2 weeks. I am done. I was only on 100mg before bed and it was giving me terrible side effects for 14 HOURS!!!!! Sometimes longer. I am so fed up with feeling like crap until about noon I am stopping. It didn't do that much for my RLS anyway, and given the side effects were TONS worse than having RLS, I am stopping it. I did see the neuro on Tuesday and she said to give it another week unless it became too bothersome. Well, I reached my limit. She said she may try Lyrica next and then probably vicodin. I am not holding my breath with the Lyrica, and I still have vicodin from my oral surgery that I only took 3 of, so at least I won't have to go out and get that filled to only have it be a waste. But, I asked her if I could try Requip again as that had the LEAST side effects and worked the best. I am willing to give that another try before moving on to narcotics. She was fine with that idea. She said I am "one of those hard to treat people and we are running out of options." Apparently I am VERY sensitive to medications--these at least! I say those drugs are POWERFUL!! Very scary how they made me feel. AND, at 100mg!! She said there are people near 5,000mg a day! I laughed and said, yeah, I am a lightweight, one drink and I am done too! :roll:

So, on goes the saga of trying to see if I can tolerate any medications while benefitting from them. But, today has been a GREAT day! I feel "somewhat" normal! Jitterlegs and all!!!

Neco · Post by **Neco** » Fri Sep 05, 2008 10:36 pm

I hope things turn out better for you.. It's good to hear that the doctor recomended Vicodin without you having to cinvince her.. Although at this point if you know it will work better for you, why prolong the suffering?

I understand if you are weary of the negative problems associated with opiates, such as risk of addiction etc.. But if you remain vigilant you should have nothing to fear.

Best of luck to you no matter what you decide

eliza · Post by **eliza** » Sat Sep 06, 2008 4:08 pm

Hi Jitterlegs,

I don’t post much anymore, but you sound so much like me I thought I’d let you know I’ve finally figured out what works for me. Now I consider my super-sensitivity to meds a blessing. I also took 100 mg neurontin. It disabled me, mentally and physically. I can’t take lots of things (most things?) and I was scared of augmentation with requip.

Fortunately my new (a year ago) neurologist/sleep doc went straight to the big stuff. Now I take methadone before bed, and ambien as needed throughout the night. I take oxycodone only as needed during the day. Even though I have severe 24/7 RLS all over, this combo can take it away completely for me.

The key is that I only take what I need – 1/8 piece of methadone under the tongue (fewer side affects and fatigue taken that way). I only need the oxycodone when I have to sit through something like a meeting or movie. I take a speck of a pill under the tongue – not much bigger than a pin head. If I need more, I take another one. I never take more than I need to cover symptoms. I can go a week without needing any oxycodone. I can go to sleep, but when I do wake up and can’t go back to sleep I take ¼ ambien. If I wake up again later, I take another ¼.

The blessing is that it takes so little of these meds to do so much for my severe RLS. They have given me my life back. Docs just shake their heads that I take so little and it does the trick.

My advice would be that if you are as sensitive to meds as I am, you always start with tiny pieces of your pills, never take extended release because you have to take too much and generally can’t split them. It’s much better to start with miniscule amounts and work up till you have what you need or know what it will do to you. A tiny piece of Vicoden made me stop breathing every time I started to go to sleep for about 8 hours the first night. I’ll never take that again and shudder to think what a whole pill would have done to me. Another word of caution with the methadone - it stays a long time in your system. It can be 3 days before you have the full affect of the daily dose you're taking. It's critical not to take too much until you know what this built up amount will do to you.

Anyway, using an abundance of caution, I hope you find your perfect combination. When you find it, you may very well not have to take much to cover your RLS symptoms.

Take care, and good luck,

Eliza :- )

Sojourner · Post by **Sojourner** » Sat Sep 06, 2008 8:20 pm

J, Sorry the neurontin did not work out for you and sincerely hoping you will find some relief soon. While I'm sure there may be people on 5000 mg of neurontin, I would think they are far and few in between.

Best Wishes

M.

Post by **ViewsAskew** » Sun Sep 07, 2008 6:28 am

Jitter, how many things has she tried? Unless it's been fifteen or twenty, I wouldn't say you are running out of options! But, that's just my take.

It seems to me that even if one drug doesn't work on its own, there can be great success with taking small amounts of two or three drugs. For example, for some people Neurontin takes away the pain, but not the RLS and Ultram takes away the RLS, so together, it's wonderful. I think this may be even better for someone who is very sensitive - you can use small doses this way.

I agree completely with Sojourner...at least on this board, we don't have anyone in the 5000 mg range for RLS. According to the Henning, Buchfurer and Lee book on RLS, the dosage for gabapentin (Neurontin) is 100-900 mg up to 3 X per day. Even at 900 mg, that is only 2700 a day. Hmmmm.

Sleuth · Post by **Sleuth** » Sat May 02, 2009 1:09 pm

I have only been on Neurontin for three days. I took 100 mg. the first night, then 200 mg. for the next two nights. Today I feel sick as a dog. I am so light headed that I almost fell a few times. I am slightly nauseated as well. I am feeling worse as the day progresses.

I was supposed to visit my sister for the weekend, but I am going to cancel that. There is no way I can make it there on public transportation. I'm afraid to even leave the house.

I can't reach my doctor this weekend, so don't know what to do. I don't think I will take any of the Neurontin this evening though.

Dale

Post by **ViewsAskew** » Sat May 02, 2009 8:48 pm

Dale, it often takes a couple weeks to get "used" to it. That said, I never did get used to it and understand wanting to give up on it.

You might try going back to 100 mg tonight and see what happens.

Sleuth · Post by **Sleuth** » Sun May 03, 2009 9:44 am

I took a chance and sent the doctor an email. She answered. She told me to cut back to 100 mg. and cut back on the Ativan. I did both.

I am retaining so much water that my legs and fingers hurt. Wow, this medicine is unreal. Which is worse...the illness or the cure?

Dale

Sojourner · Post by **Sojourner** » Sun May 03, 2009 5:59 pm

s, It truly hard to know when to "give up" on a med. I think we have had several threads about that dilemma. In the end, it's probably just your own gut feeling. For what its worth, I had a disaster with Neurontin the first time it was prescribed for another reason other than RLS. Several years later, however, after running out of meds to try for RLS I decided to revisit using the Neurontin. It has worked quite well for me for more than two years now. So, go figure. Anyway, cutting back on meds or trying less mg in combination with others are good option to try. Best of luck, M.

Neco · Post by **Neco** » Sun May 03, 2009 6:38 pm

Have you told your Dr. about the water retention and the effects it is having on you? You need to tell her ASAP, I think untreated Edema can cause some serious problems in the long run. It's OK to have it as long as you can manage it properly though.

Diuretics (water loss pills people often stupidly use for weight loss) may be able to help you with the water retention, and your doc should be able to prescribe those. But you have to treat them very carefully.

When I sometimes get Edema in my legs, I will sleep with them elevated to help the water flow back down, and also help it get absorbed into urine so it can be passed. You might be able to try this with other affected parts as well depending on comfort and the logistics of it all.

SquirmingSusan · Post by **SquirmingSusan** » Sun May 03, 2009 10:44 pm

Neurontin can be a really strange drug. I don't take it at all anymore because it does absolutely nothing, and I don't want to increase the dose again. But when I first took it, it totally knocked out my sense of balance, and made me rather happy and giggly. I took it for a long time at bedtime and it really helped me sleep, and cut down on the PLMD. A few months ago I tried increasing it to 3 times a day because it was helping so much with my RLS. But then my hands and feet started to swell. I'd wake up in the morning and my hands would be numb because they were so swollen. So I tapered off and quit taking it altogether.

Lyrica works similarly to neurontin, and sometimes the side effects are more tolerable. I was having great success with that drug the second time I gave it a good try, but then my hands and feet started to swell.

Personally, I don't think that swollen hands and feet are an acceptable side effect. I wish I could take those meds because they really do seem to help, especially with the periodic limb movements, but also with the sensations. I was hopeful that someday I could just take one of those, and wean off the methadone. Methadone has no bad side effects, except the constipation, but it's just such a hassle to pick up the prescription every month. OTOH, I'm glad to have something that works.

You'll get there, Dale. There will be something that works for you and doesn't have horrible side effects. It just takes time to find it. Hang in there.