Neurontin?

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.
ViewsAskew
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Post by ViewsAskew »

Man, my friend had to get a new one. It was an awful experience - he kept saying that because his tests didn't show anything that she was making it up!!!! She actually told him that if he would give her a referral to a new doc, she'd change her HMO so she didn't have to see him anymore. He agreed!!!!!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Kwazylegs
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Post by Kwazylegs »

I'm so sorry to hear that your friend had to go through that kind of harassment...that her doctor essentially dismissed her pain/discomfort in a most unprofessional way. I'll admit to the possibility that there does indeed exist psychosomatic pain, but for me right now, what accounts for the hematuria which is clearly visible in my urine? Can my mind conjure up bleeding? Oh well. Tomorrow's a new day. I'm going to have to make some phone calls to try to get some straight answers. I'm also going to request copies of the lab work, urine culture, and cystoscopy reports in case I have to see any new doctors. I guess that mediocre health care providers don't just exist in the realm of RLS...there are good and bad doctors in all specialties of medicine. I hope and pray that we are fortunate enough to find more good than inept ones. ---Andy

jan3213
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Post by jan3213 »

Way to go, Andy. Don't give up. It took TWO YEARS for someone to discover that I actually had a REAL problem. I was treated horribly by a neurologist who actually yelled at me in his office when I told him I was in pain and had continuous numbness on my left side. Because he didn't do the right tests and didn't try to find an answer, I was dismissed as an hysterical woman. I'm going to call his office tomorrow and tell him that he missed the boat big time. He doesn't know I had back surgery--he's going to know tomorrow. I need to do this for me.

Sometimes we have to be our own detectives. Good for you, Andy. Let us know what happens.

Jan
No one is alone who had friends.

Kwazylegs
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Post by Kwazylegs »

Jan,
Well, I saw the urologist again yesterday afternoon, and tried to get him to give me some options...asked him for possible causes of the pain...told him that I felt in a hopeless position regarding the pain, that I was running out of sick and vacation time at work. And the guy showed absolutely no compassion, empathy, or even a desire to discover a reason for my pain. To use a Donald Trumpism..."he's fired!". I'm seeing my PCP tomorrow to help me find another real urologist, not one fresh out of the Mattie Mattell School of Medicine. By the way, has anyone experienced burning painful sensations on the skin of their legs or feet as a result of taking vicodin? I've been experiencing these pains for the past 3 days, and I was wondering if they might be related to the med. It's funny how all this pain stuff started within hours of the epidural on January 25th. The pain and numbness in my right leg went away for a week or so, and now I find it's returning again, especially in the mornings. The one thing I'm sure of is that I won't have another one of those epidurals, even if this new pain stuff is just coincidental to the injection...I just don't want to take a chance...maybe I'm allergic to the Depo-Medrol or whatever else was in the injection that the pain guy used, I don't know. Well, thanks for all your support, and I hope you're all having a good day. ---Andy

jan3213
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Post by jan3213 »

Andy

I'm so sorry you're going through all of this. My former neurologist (the one I called yesterday) wanted me to have an epidural and I refused. I'm really glad I did. I've heard they are very painful and don't really help all that much. In fact, it sounds like the one you had made things worse.

I finally went back to my PCP and insisted that she send me somewhere else. She finally did (she's a good doctor, but poor at time management). I finally saw a great neurologist who believed me and we went forward from there.

I wish you the very best of luck, Andy. Living in constant pain and not know what the problem is is a horrible way to live. I know---it took over 2 years for me to find an answer. But, I did. I hope you do, too!

As far as the Vicodin causing an allergic reaction, have you asked your pharmacist? I have a really good relationship with mine and often ask him about meds before I would ask my PCP---I don't think they really know all that much, frankly. You could very well be allergic to the Vicodin, I don't know. It's worth investigating.

Hang in there, Andy. I was at my wit's end when the problem in my back was finally found. I was ready for another "we don't see a thing" answer. But, the answer was there. I hope the same happens to you.

Jan
No one is alone who had friends.

Kwazylegs
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Location: Lower Alabama

Post by Kwazylegs »

Jan,
I don't know how you managed to hang in there for 2 years to get a diagnosis for continual pain! This present urological pain is less than two weeks in duration, but its intensity, combined with the RLS and sleep issues that have been going on for so long is wearing me down. Calling my pharmacist is a great idea (I seem to have difficulty coming up with ideas lately). I'll give him a call to ask about possible adverse effects of the vicodin. As soon as I get a hold of the epidural procedure report and identify what steroidal preparation was used, I'll run that by the pharmacist also. Thanks again for your help and support... They're worth more than any definitive diagnosis from a doctor! ---Andy

ctravel12
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neurontin?

Post by ctravel12 »

Hi Andy I am so sorry that you have a neurologist that does not even care. You sometimes wonder how they even got their medical degree.

I have never used neurotin, but hope that you find a good and caring neurologist that will listen to you and give you the right meds that will help you.

I have often said that until they walk in your shoes they have no idea what you are going through. I would not wish this on my worse enemy. But with your current neurololgist let me thinkkkkkkkk :lol: :lol: :lol:

Andy, please keep us posted on how you are doing. I just love this group as they are so caring and understanding.

Take care of yourself and hope all goes well with you.
Charlene
Taking one day at a time

Kwazylegs
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Location: Lower Alabama

Post by Kwazylegs »

Charlene,
It's good to hear from you again. Actually, I haven't had any problems with a neurologist lately (probably because I haven't seen one lately). It's this urologist that's got me ticked off. I'll keep trying to find a uro worth his/her salt...eventually, I'll find a good one, or the pain will cease while I'm looking! Geeze, I wish Marcus Welby was alive and well in real life! You know... delivers a baby in the morning, performs brain surgery in the afternoon, and makes a compassionate house-call to a grieving widow in the evening hours! Anybody here remember family doctors making house calls?
You're right about this group...really special people! ---Andy

ctravel12
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Post by ctravel12 »

Kwazylegs wrote: I wish Marcus Welby was alive and well in real life! You know... delivers a baby in the morning, performs brain surgery in the afternoon, and makes a compassionate house-call to a grieving widow in the evening hours! Anybody here remember family doctors making house calls?
You're right about this group...really special people! ---Andy


Hi Andy it is good to see you post too. Just wish you were doing better. OOPS that was my mistake. I did not see urologist, but cannot blame you for being upset.

I love the part of Marcus Welby - how true that is. If only that could happen we all would be doing great :D :D

Take care Andy and hope that you find a good urologist and I guess the same goes for them too; how did some of them get their medical degree
:?:
Charlene
Taking one day at a time

Sojourner
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Post by Sojourner »

Andy, continued best wishes as you sort out your dilema. I have used vicodin relatively regularly for a couple years and have not had the itching issue but did have headache and flushing.

Reagading epidurals being painful. I have had several over the past three years with, luckily, no side effects. However, I had all mine done while under very mild anesthesia. Never felt a thing. The way to go in my opinion and probably the only choice for me.
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FidgetBoy
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Location: Minnesota

Post by FidgetBoy »

hi Andy-
I couldn't find anything about vicodin that talks about burning or pain as a side-effect but I do know it can cause rashes and itching. That can usually be handled with an antihistamine.... but antihistamines cause a worsening of RLS. :roll: I also found this little tidbit about vicodin: "URETERAL SPASM, SPASM OF VESICAL SPHINCTERS, and URINARY RETENTION have occurred with acetaminophen/hydrocodone use (Prod Info Vicodin(R), 1996)." I don't know your whole med history but thought it was worth mentioning! Keep your chin up.
Josh

omg
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Post by omg »

I have been on 1800mg of Neurontin, ("Moron-tin" as I call it) for a few years now for a shoulder injury that resulted in neuropathic pain, and I experience exactly zero help with regard to the incessant moving of my legs from the Neurontin.

I think I'm just restless in general as it's not just my legs, but other parts of my lower body as well that succumb to the need to be in motion...I seem to have it good, but so long as something is in motion, my body seems to be satisfied. I move at the knee, ankle, glutes or the joint where the leg connects to the hip. So long as something's moving...

I hate the movements overall, but find them somehow subconsciously soothing I guess; I must, for I can stop all the movements if I focus on it carefully, but it starts up automatically if I'm not paying attention.

I am worst when I lay down. I shuffle, move, fidget, shake at the places I mentioned. Sitting is a bit better in that the movements are not so pronounced, frequent or extreme, though they do persist, and at times still get out of hand.

Maybe it's just excess stress. Maybe it's nervous energy expending itself. Maybe I wasn't rocked enough as a baby.

I feel helpless and am very afraid to take any more drugs than the Neurontin as that particular drug shaves about 100 points off your IQ while you're on it, and makes all your actions sludgy, not to mention the fact that you forget everything (including my own damn birthday, which worked out to be a VERY awkward and humiliating thing for reasons you can't even imagine.)

Anyway, just wanted to drop my .02 into the thread.

I hope today finds you all peacefully at rest.

=)

ctravel12
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neurontin???

Post by ctravel12 »

hi omg and welcome. I am so sorry that you are having a rough time with your rls.

You may want to read the forum New to RLS "Managing RLS" has alot of good information to read and also Mayo Clinic Algorithm has a good article. If you are able to print out the May Clinic article it would be worth it to bring in to your dr. It is good to educate yourself as much as possible before seeing your dr.

Reading alot of the old and new posts has a fountaing of knowledge that I am sure will be alolt of help to you. I know it has helped me.

I am glad that you gave your .02 and thank you for sharing that with us.

You also have a wonderful and peaceful rest today too.
Charlene
Taking one day at a time

Sojourner
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Post by Sojourner »

Just checking in a gain and talking to myself. I continue to have relative success with neurontin particularly with respect to PLM's for which I am very gratefull. Althught it does not make me sleepy it has enabled me to get several days of almost regular sleep but at least some restful sleep each night. Side effects continue to be manageable. Fortunately, I do not suffer any of the brain fade, or perhaps people are just to kind and don't tell me otherwise. Also, am not at all sleepy during the day.

Do have a question or would appreciate comments. I am currently taking 1000 mgs up from 900. Compared to some, I realize that this may not be too great amount but I also realize this is much higher than others. For those who have tried neurontin and stopped what has been your main reason for stopping? Wast it lack of effectiveness, side effects, or just because the dose was getting too high even though the effectiveness and side effects were ok? Did you ever get to a point where the effectiveness was good and you didn't have to increase the doseage for a long period of time? What was the longest period between dose increases?

Really want this med. to work as the PLM's can be quite distrubing as others here know. But, don't want to have to keep upping this dose as infinitum either. Thanks.
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jumpy
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Post by jumpy »

Mark, Neurotin did not work for me...No side effects worth talking about. I was on 600mg 3xs a day. It did not make me sleepy. Nothing does. I am now on Lyrica 75mg 2xs a day and I think I have noticed an improvement. No pain at all during the day.. yesterday and today. Hope it's not just in my head. But if it is in my head and it still works that's ok by me... I've been on it for about a week and a half....lPat

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