nuerontin

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
becattx

nuerontin

Postby becattx » Sat May 15, 2004 3:05 pm

Well last night I tried Neurontin again, only 300 mg. I also took 10 mg. of Ambien, and of course my Mirapex. It was the first night I've slept in almost two weeks. I have not slept for longer than an hour or two each night, even during power naps during the day. The past 10 has left me worthless, my body wrecked, my family suffering along with me.
I'm not so sure that I like Neurontin. My head feels as if someone where inside pushing on my skull. My legs and arms feel like they have a hangover. Some pain but mostly tired and some stiffness.
It has been years since I had a dream that I really remembered the next morning. Wow what dreams I had last night. One might be worth the headache I have this moring.....LOLwhoooo-hooooo
It's been since FEb. of this year that I have be in an ATTACK. I have no idea why, maybe a tolerance to the Mirapex? My last appt. the doc. increased the Mirapex to try and abort this attack. I did not tolerate the higher doses. The itching sets in about an hour after I take the Mirapex. At first I thought this was a curious thing. Not too important, because it was dealing with the pain. However, in the last month I have begun to itch more and more. I'm leaving massive marks, and small wounds on my legs and arms. It's not so curious anymore.
Can someone help with this, PLEASE? I have a doctor's appt. this next week. I need advice. HThis Doc. and I have a crappy relationship and I feel that maybe, he has not provided me with the best path. he seems to just walk the easiest path with me. I did try to ease things between us, to no avail. My husband and GP insisted that I stick with him to try and resolve my RLS issues, as he is suppose to be the expert. He doesn't know it, but he's out after next week.
I want to have my quality of life back. I want sleep. I dream of not being in pain 24/7.
I sound brave when I'm chatting to you all, but the truth is I'm scared....I'm 40 and this is slowly wearing me down. The future feels bleak (sp?) at best. I will state that I am not, nor ever have been one to consider ending it all. I know that is an issue in here. I have too much hope for tomorrow, always have. Please don't worry about that with me.
I will look for a new Doc. after this appt. (refer to I HATE MY DOCTOR in the Genral Topics forum). Our insurance was just changed and I'm waiting on a list of providers.
I thank you all in advance for you time, support, and advice.
God Bless

becattx

Postby becattx » Sun May 16, 2004 4:59 pm

Well I must say it's only been aliitle over 24 hours since my last post. They were tough ones. The mild to strong headache lasted until this morning. I continued my schedule as planned. Other than a constant itch and a bit of stiffness my RLS seemed to have broken up some. I admit to my legs feeling weaker, but not in great pain. Felt good to get that one night of sleep. I'm sure it was not worth it at all.
Yesterday was a fully active day for me, a normal schedule of sorts. The Nuerontin Hangover did not was too much for me. I tried all I had available including a miagraine medication, pain meds., massage, and my personal favorite........ignore it all and go on.
I tried several times to go to bed last night, bed = torture most nights.
I was able to fall asleep around 6:30am this morning. My rest lasted 2 hours. I was in a full grogged out stated shuffling around the house to work my legs. Returned to bed for another 3 hours and here I am. My legs are so weak, feeling like the mountain came to me. My does not hurt, just the aftermath of a hard day's miagraine.
Came to my own thoughts last night, No More Nuerontin. I will have to muster to guts to tell the Doc. what I want. SLEEP, NOW, I want Sleep. My body will never grow old this way. My family has suffered enough, even though I have stopped talking about it to most of them. They suffer with me. I am weak today, but I woke up and the sun was up....imagen that means I'm going to make it another day.
God Bless

User avatar
Rubyslipper
Posts: 992
Joined: Wed Mar 24, 2004 2:53 am
Location: Missouri

Postby Rubyslipper » Sun May 16, 2004 6:46 pm

Sweetheart, I am SO with you!! I have had two decent (not great) nights' sleep in the past two weeks. I have increased my Neurontin to 300 mg in morning and evening. So far, all I have gotten out of it is a bad groggy feeling during the day. I am walking the floors until 1-2:00 a.m. and I have to get up at 5:00 a.m. to go to work. My legs are so tired all the time like I am carrying around 20 lb weights. My husband is trying to be supportive but I came home the other night and he said he had listened to a talk show on the radio which said that most "leg problems" can be cured by drinking more water and losing weight. Guess what kind of response he got? :x I am trying to drink more water and I do need to lose 20-25 lbs but these things will NOT cure RLS. So I am like you, I no longer tell him about the hell I am going through. At least I have a good doctor who is open to new ideas and suggestions. I think I will make another appt with her this week. As for you, you and your health are important!! Who cares that certain people (even important ones in your life) want you to keep going to this doctor. FIND ANOTHER!! Keep looking until you find one who will help you. Even then, you will have to experiment with your meds until you find the one(s) that help you most. I can tell by what you wrote that you are a strong person. Use that strength to get better. It's so hard sometimes when you feel really down (like the two of us) to get back up and force yourself and others to do something. :( But we have to. God thought we were important enough to make us; guess we had better do something to prove to Him that we think we're important too. Please keep me posted on your journey. This is a great site with wonderful, caring, SMART people (check out Mr. Jumpyowl's writings). Use us as a sounding board, a shoulder to cry (and whine) on, and as friends who care. We're rooting for you!

becattx

Postby becattx » Sun May 16, 2004 7:38 pm

Thanks for the support Ruby. It's nice to know that I have someone, somewhere to talk about this. I would love to find a medical professional that suffers with this. I believe that would change the course of my treatment. However, I know that ....I.... have control over that. The last ten days, two weeks is going to make it possible to confront this Doctor. I know what I want to happen while I look for a new Doc.. I am going to have to make it happen.
Thanks for letting me just be down about it all. It's a hard thing to hide some days.
God Bless

Beniamino

Postby Beniamino » Fri May 21, 2004 4:28 am

Hey Becattx,

I am with you, too. You are not alone, and you WILL find a better doctor, but it may take a while. And you're absolutely right about how fast things will change once a few prominent doctors come down with this.

I have been on .25 mg of Mirapex for about a year and a half and have recently upped my dose to .5mg because my RLS got worse. I've also recently started something that an accupuncturist prescribed for me: an herbal supplement called "Corydalis Formula" made by Golden Flower Chinese Herbs (Placitas, NM); each tablet contains 600 mg of Corydalis yanhusuo rhizome extract, Paeonia lactiflora root, and Glycyrrhizae uralensis root. I only started it last week so it's too early to tell if this stuff is any good. So far it seems to help when I do take them three times a day.

I did four sessions of accupuncture and didn't get any relief, by the way.

Have you tried hot baths before going to bed? I sually get pretty good relief from at least 20 minutes of a 104 degree soak. Have been doing that about four nights a week for three years.

Then ther's Ambien. I wonder how many people have tried Mirapex and Ambien over a long period...I would worry about developing tolerance to Ambien, but for the short term, it works wonders. You should always have some as a back-up when nothing else is letting you sleep.

Sweet dreams, and let me know if you have any luck with the Corydalis formula.

Benjamin Sinclair
Jackson Hole, WY

SO keep

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Thanks Ben

Postby becat » Fri May 21, 2004 6:01 am

Hi Ben, Thanks so much for your support and the suggestion of the herb. I will be honest and tell you that Natural is OUT for me right now. I've been in an attack since the middle of Feb..
And needles, I just had to laugh out loud. Your the forth person in the last week to discuss that path. You are the only one that has RLS and the only one that said....not so good.
Iwould have to agree about the hot baths. I've had RLS all my life. I lived with a hot waterbottle through my childhood. Can you imagen how exciting a plug in heating pad was for me. I've had chronic insomnia for 10 years now.
I take Mirapex as well .0125 x 3-6 a day. I prefer the the lower dose because the higher dose makes me itch. Itching and twitching are not my side issues. See I have painful RLS, my GROWING PAINS never ended. I was fine really, until ten years ago when broke my leg/ankle in four places. It's never, 24/7, stopped hurting. Iwake up on 3-4 pain level daily. Ending my evening around 8,9, or 10. This present attack has been a nasty one. I hadn't slept for the last 3wks, for longer that 1-3 hours a day.
After my last try with Nuerotin, maybe Sat. May 15, i took a total drug holiday.
Stayed awake and in pain. Started back on small dose of Mirapex. Finally I found SOME relief. Not wonderful, but some was good.
My Doctor's appt. went as I thought it would. My hubby went with me. I went knowing what I wanted to try. I had some idea that this Doctor would response better with my hubby right there. Boy I was right.
Body language alone was so telling. He also responed better with my husband input as to how an outsider see's this, me.
My sweet Husband said the most jaw dropping thing, a light bulb moment.
The doc was going on about if it's really rls, then ..blah blah blah but if it's this well...blah blah blah....then there could be a mental/stress issue which requires .......blah blah blah.
My honey stopped him. "W're getting nowhere. W all want to know why this is going on, but for no she's in real need of treatment. She's suffering and she doestn't need to. It's like having a 5 alarm fire and instead of putting it out,you want to know why it's burning? Lets shoot downs some flames first.Then we can look for the Holy Grail." I was just wowed.

We left the office with a mg of ativan at 6-7 in the evening, to start slowing me down. I do get to take 10mg of ambien for a while to try to reset my clock. We are trying this for 14 days. Longer if needed. I've struggled so long with sleep I will take it until I am rested again. I always take it when I travel...My RLS travel kit.
He did give me pain meds. to use as I needed them, he offered daily. I am not ready to do that. I'm only forty and figure I'll need those later. Again they become apart of me travel kit. I will deal with the rest best I can.
This is such a labor thing RLS. But I believe that we have a chance to educate people. Just have to find the right way.
Have a great day. Check in any time.
BTW, LOVE WY.

Litlkitti

I am new here and have question

Postby Litlkitti » Fri May 21, 2004 4:20 pm

I was diagnosed with RLS a few months ago when I went for a sleep study because I was not sleeping more than 1-2 hours at a time, was sleepy and groggy all day long. I was told that I have sleep apnea and I use a bi pap machine at night to help me sleep sound and wake up rested. It forces air into my airway through a nose mask and also "breathe" out for me a little bit. My primary care doctor had given me Valium 5 mg to be taken at bedtime for the RLS. When I went to see the sleep study doctor for my test results he switched me to Sinemet 25/100 saying that it was better for me than the Valium. As long as I take it every night I am doing much better and sleeping much sounder. I can tell if I forget to take it as I usually wake up sometime during the night with my legs being very restless. My question is have any of you been diagnosed and/or treated for sleep apnea. These two problems seem to go hand in hand in my case. Joyce from Ohio

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Thanks Joyce

Postby becat » Fri May 21, 2004 4:59 pm

Hi Joyce.
Thanks for your input. Believe it or not I have never done a sleep study, nor have I been offered one. The reason is that I know that my RLS is a family trait. Both Mom and Dad suffer to some degree. There are at least 7 of us, that I know of right now, that have RLS. Two, maybe three of us have extreme pain with ours....day in day out 24/7.
Yes, I probably suffer some of the sleep apena as well. It is an issue that is on hold for now. In fact I saw your air device on my Wed. appt. with the Doctor.
As you might have read before, I have not slept longer than 1 -1 1/2, maybe two hours at a time in three weeks. I probably slept 20 hours in a week. I canceled several appts., due to fear of driving unsafely.
This attack has been with me since Feb. of this year. As my Husband put it, for now we need to fight the fire, instead of looking for a cause. i.e. why my Mirapex hasn't aborted this attack.
I have now slept for two nights in a row. Yeahhhh I have started back on the Mirapex and other meds. after a complete Drug Holiday. It seems to be helping at a lower dose.
I'm glad you jumped in on this. We need all the help we can get.
Have a great day in Ohio.
[/quote]

User avatar
Rubyslipper
Posts: 992
Joined: Wed Mar 24, 2004 2:53 am
Location: Missouri

Postby Rubyslipper » Sun May 23, 2004 1:51 am

Just in case you want my 2 cents worth :wink: I have had two sleep studies and maybe if the doctor had any intelligence at all, I might have gained from them. As it was, I don't have sleep apnea although I do snore a little if I am on my back (I rarely sleep on my back). My oxygen levels drop during the night but he said not enough that the insurance company would pay for me to have it at night (still not sure how he knew that, he didn't even know who I had insurance with). But they did drop below 86% which is not a good thing. Otherwise, my legs behaved when I did the sleep studies mainly because I didn't sleep very much. I do think that they can be invaluable for many people. I am on Mirapex and Neurontin (Neurotin 2x day) I have tried massage, hot baths, staying away from caffeine and alcohol. So far there does not seem to be any method to this madness. I have counted myself blessed so far not to have all the problems that others here have but lately that hasn't been so. Yesterday I drank plenty of water, no stress (had a 5 hour spa treatment with massage thanks to my daughters) came home and had a lovely evening. Took all my meds like a good girl and walked the floors until midnight. Go figure. Finally fell asleep on the sofa with my legs tucked tight under me in a really uncomfortable pose that kept the muscles stretched. Needless to say, when I woke up I couldn't walk!! So I am with you all and hope someone out there will take us all seriously enough to eventually find if not a cure, something that really works for us all. In the meantime, I'm open to what works for others so keep me posted on this board.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Hi Ruby

Postby becat » Sun May 23, 2004 2:47 am

Well, I must say I'm glad you had the day off, like a PRINCESS I might add. That Mother's Days gift was a good one. Only wished it had done more for you. I know your loosing sleep is starting to add up in a huge way. I'm with you, you know that.
I tried a drug holiday, it wasn't working anyway. Seems to help temp., I just can't stand the higher doses of Mirapex.
As for the Hubby, Bless him. Mine is the same way, so I made him go to my sleep Doc. appt. with me last week. He really had, HAS, no idea. I do think my thoughts were right in making him go. The Doc. responed better than ever before. I had backup. (still think part of it was a male thing. no offense to males that read this) Hubby was able to give a different point of view and heard for himself how hopeless this all seems.
Mine might be one of those extremely weird cases I guess. I don't fit the mold, nor do you I guess. Do any of us? Have you asked for sleep meds. yet? You might, I can tell you, your whole body just starts to break down.
I'll row for awhile, ok 14 days.......I have to be on Ambien for 14 days. lol You take a break while you can.
May sleep find you and embrace you my friend. Take care.

User avatar
Rubyslipper
Posts: 992
Joined: Wed Mar 24, 2004 2:53 am
Location: Missouri

Postby Rubyslipper » Mon May 24, 2004 1:25 am

Thanks for taking over the rowing, I think I was just taking us in circles anyway! Maybe someday we can afford a boat motor! In the meantime, thank you for the support. I may see if my hubby wants to go with me next time to the doctors. (I go to his with him every time) That was a smart move on your part. I also may have to ask for a sleep aid although I really hate to. I am trying to take notes of my days and nights to see if there are any other things that help or make it worse. We'll see what happens.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

WANT AD

Postby becat » Mon May 24, 2004 3:10 am

WANT AD.......
OUTBOARD MOTOR NEEDED......TOO TIRED TO ROW. WE'RE JUST ROWING IN CIRCLES. NOW HAVE TO ADD NAUSEA TO LIST OF THINGS GONE WRONG.


Sorry Ruby, it just jumped out at me. I'll let you know when we have enough money to buy one....LOL LOL

Guest

Neurontin

Postby Guest » Thu Aug 19, 2004 7:43 pm

Hi, I recently tried Neurontin because of some things I have read on this site. I was hesitant at first, but I was at my wits end. It did not work well at first and it made me feel drunk and hungover the first few weeks. Now I have very little if any side effects except that my RLS seems to be at bay all of the time now. I take anywhere from 600 to 900 miligrams per day. I have noticed though that when I take anything like cold medicine, too much caffeine, benedryl, niquil, alcohol, stuff like that, then my RLS gets doubled in severity. So I just avoid those things alltogether.
Feeling much better in Vegas.

guest

meds

Postby guest » Thu Aug 19, 2004 8:23 pm

Hey, I just found this article on medscape.com I thought it was a decent article. It's not the first positive one I have read when they have done a study though. I tried Neurontin because of things I read on this website before. I do realize though that it does not work for everyone but I thought this article was nice. I have checked into and will hopefully be the spokesperson for Pfizer regarding it's treatment of RLS with Neurontin. Cross your fingers for me :-) Hope this message helps someone as your messages have all helped me so much.





Gabapentin Effective in Restless Legs Syndrome


Laurie Barclay, MD


Nov. 25, 2002 — Gabapentin was effective for restless leg syndrome (RLS), according to the results of a double-blind crossover study published in the Nov. 26 issue of Neurology. Longer studies will be needed to confirm long-term tolerability of this drug.

"Gabapentin may be a potent agent for treatment of even severe RLS, without the disadvantages of long-term complications of previously favored treatments," study author Diego Garcia-Borreguero, MD, from the Fundacion Jimenez Diaz in Madrid, Spain, says in a news release.

Study subjects were 24 patients with RLS, eight men and 16 women, none of whom had been treated previously with either gabapentin or dopaminergic medications. All other medications were discontinued at least two weeks before study entry. In a crossover design, patients received either gabapentin or placebo in the first of two six-week intervals, with a one-week washout period between alternating treatments.

Gabapentin reduced RLS symptoms compared with placebo, based on an RLS severity rating scale, a sleep questionnaire, and patients' own perception of clinical symptom change. Sleep studies showed a marked reduction in periodic leg movements during sleep, increased total sleep time and slow wave sleep, improved sleep efficiency, and decreased stage I sleep during gabapentin treatment.

Gabapentin treatment was most effective in patients whose symptoms included pain. The mean effective dosage at week 6 was 1,855 mg, but therapeutic effects were already evident at week 4, when mean dosage was 1,391 mg.

"Our study shows dramatic therapeutic effects of gabapentin in RLS under controlled conditions," says Dr. Garcia-Borreguero. "Additional long-term studies are warranted to confirm our outcomes and examine gabapentin tolerance during chronic treatment."

Pfizer S.A., Spain, supported this study and employs or has financial arrangements with some of its authors.

Neurology. 2002;59:1573-1579

Reviewed by Gary D. Vogin, MD


--------------------------------------------------------------------------------




Laurie Barclay, MD Freelance writer for Medscape Medical News

Medscape Medical News is edited by Deborah Flapan, assistant managing editor of news at Medscape. Send press releases and comments to news@webmd.net.



Medscape Medical News 2002. © 2002 Medscape





Porkgrind3

Neurontin

Postby Porkgrind3 » Sat Oct 30, 2004 5:49 am

Why is there all these side affects with Neurontin? A lot of the postings I ve read mention achey legs and feet.
What exactly is the body doing in response to the med?
The purpose is to relax the muscles in the legs and feet so they will be still and lose the sensation to have to move them right? Like a localized muscle relaxer? Maybe thats why people get sore...their muscles have been tensed up for so long the relaxer is a change to get used to so its like not stretching before you excercise causing the soreness. Am I right?
:?:


Return to “Prescription Medications”

Who is online

Users browsing this forum: No registered users and 1 guest