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holly
USA
243 Posts |
 Posted - 01/11/2007 : 10:51:34
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| While having my yearly lunch with one of my deceased mothers dear old friends we had a pretty interesting conversation. She is one of the dearest old ladies with alot of wisdom. She has problems walking but takes it in stride as just another day in the life of what must be close to 75-80 years old. Her disposition was wonderful as usual. I was in a good mood and she asked about my health. I told her I was fine except for these darn feet! lol. I told her my story and she proceeds to inform me about a friend of her's who had just terrible neuroligical feet problems & who's life has changed from taking Neurotin. I told this older lady friend that I had a unfilled prescription for Neurotin for a couple of years hanging on my bulliton board but was afraid to start on it since it doesn't cure but only relieves. She replied "Holly somtimes we get things that just don't go away . If this can make your life more comfortable then why not be comfortable???" Her friend has been on it for years and now lives a much less problematic life from her neuroligical problems in her feet. Then I said "well maybe there is something to that". I thought how taking Acollate for my asthma has basically enabled me to live in NY in the winter and I even took my kid sleigh riding in the winter of last year because of that oral medicine! It has made a big difference in my life over here in NY! (I have to get my levels checked while on it and so far so good) Maybe I should consider this Neurotin for my feet??? So anybody here try or use Neurotin? I am probably on the wrong board to ask about this but what the heck!!! |
Edited by - holly on 01/11/2007 11:19:08 |
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dwinsor52
USA
81 Posts |
Posted - 01/11/2007 : 10:54:48
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I was on Neurontin for years. It will not help with TMS. It is very sedating for some people, including myself, and made me feel awful. I have learned the hard way, and I MEAN the hard way, that drugs for pain will only provide temporary, if not just placebo, relief for TMS.
Hope this helps.
Debby |
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holly
USA
243 Posts |
Posted - 01/11/2007 : 11:18:30
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| yes... but say it is NOT TMS for argument sake. Say the lady really has bad neuroligical problems (as I am sure at this point I just do) and it really helped her?? I would agree that this would not help a TMS problem but I am inquiring about helping if there is an actual neuroligical problem going on there like that old woman's. If the problem was real (and there are real people with real problems out there outside of the world of TMS). I was concerned about the drowsy effects I read about in the past here & that is one of reason I steered away. |
Edited by - holly on 01/11/2007 11:20:08 |
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holly
USA
243 Posts |
Posted - 01/11/2007 : 11:46:19
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| the neuroligist never put a year on it. lol. It is for the lowest dose possible. I would have to reserch it more of course. I don't jump into anything anymore. with age comes wisdom (at least we derive something good out of getting older!) lol |
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Littlebird
USA
391 Posts |
Posted - 01/11/2007 : 15:31:04
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Hi Holly,
I took Neurontin for my neurological symptoms, as well as for the general pain of CFS/Fibro, the insomnia, and as a "mood stabilizer." It was originally prescribed by a psychiatrist who believed I had bipolar 2 disorder, but she knew about the general pain and told me it would help that and also help with the insomnia. I was instructed to take 300 mg. twice a day, but it made me so groggy all day, so then I was told to take 600 mg. at night. That was still too much, so I dropped to 300 mg. at night.
When I later developed neurological symptoms in my feet legs and hip my primary doctor prescribed 100 mg. capsules also and told me to try taking 400 or 500 mg. to see if that left me less groggy. At one point I was taking 500 mg. even though it did make me groggy, because the symptoms of burning pain were so severe. After a few months I got tired of being groggy and cut back again, but the neurological symptoms were not as bad as they'd been before. When I learned of TMS, my neurological symptoms quickly disappeared, except for the occasional toe issues, usually under blankets. But I realize you feel your neurological pain is not TMS, so I don't want to give you the impression that I'm saying it is.
Once the neurological pain settled down, I started weaning off the Neurontin without an increase in symptoms. I found my thinking became much more clear and suddenly realized that much of the "brain fog" I was blaming on the "illness" was actually due to the Neurontin. So I feel fortunate that my symptoms were TMS so that I was able to give up the Neurontin, because it really affected my mental clarity. That doesn't mean it will have that effect on everyone, but I think it's a common side effect. My husband took Neurontin briefly for seizures and it affected his thinking too, but it didn't stop the seizures so he didn't take it for very long. When I was frequenting a Multiple Sclerosis board there were people there who did well on Neurontin and others who didn't.
Don't know if any of this will be helpful to you. Hope things work out for the best, whatever that turns out to be. Take care--Corey
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holly
USA
243 Posts |
Posted - 01/11/2007 : 15:42:27
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| corey thanks. I was wondering if I could get the discomfort to wain & that maybe, just maybe I could then wein off of it with the symptoms not returning. I know it is wishfull thinking but maybe I could try taking the lowest dose 100mg. at night before bed only? I can't afford to feel drowsy!! That is no good. I hope to find out more about this drug. Maybe there is a possibility here. |
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redrockrick
USA
10 Posts |
Posted - 01/12/2007 : 13:08:36
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if you must take something try a drug called namenda. it works as a nerve blocker but is an alziehmers (sp) meidcation. it worked well for me for a while without all of the side-effects of neurontin.
Rick |
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holly
USA
243 Posts |
Posted - 01/12/2007 : 13:59:26
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| Rick had you tried both?? The side effects (drowsiness) of Neurotin is the main concern for me. Did this make you drowsy? Thanks! |
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chicago
85 Posts |
Posted - 01/12/2007 : 21:19:53
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Hi Holly,
I read your post earlier today and have just now had a chance to respond. I have had ten years of experience with foot pain. The burning type in both feet. I have benn to dozens of doctors including the U. of Chicago and the Mayo clinic. I was dx with neuropathy and have been on oth elavil and neurontin. Usally what neurologist do with these drugs is start you out on an initial dose and then ramp you up until there is some relief. I was on Neurontin for over 2 years on doses as high as 2400 mg. At 1800 mg I started to feel slow mentally but I thought the higher I went the less pain I would feel. The problem is they didn't help but I was stuck on them psychologically because I thought they would help. I was also stuck thinking I had neuropathy because of some tests (QST and the sweat test) I failed at the Mayo clinic. However even on very high doses of drugs I was still in pain. I went to one particular doctor at thwe U. of Chicago who told me to stop taking the drugs that I did not have neuropathy. But what did I have? It wasn't until I found Dr. Sarno's book did I start to even think that it might be psy. induced. That was the turning point for me. I have slowly started to feel better without medication. m I'm not 100% and have my bad days but I'm feeling alot better. The fact that neurontin did not help me convinces me that I never had true neuropathy. My nerves are just a soft spot when I' afraid, anxious, fearful. Know for the other side of the coin. My dad takes neurotin 2400 mg and it helps him greatly, he says it takes the edge off of his constant foot burning. He is a diabetic and has been dx with neuropathy. The medication helps him live in less pain. I think it with be worth a try. If you do not get some relieve you can be assured that it is TMS. Either way you may feel better. Let us know how your doing. I really understand what burning means and its not fun. Take Care! Chicago |
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Hestia
21 Posts |
Posted - 01/12/2007 : 22:18:44
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Holly,
I took Neurontin for my foot pain/numbness. I had plantar faciitis and tarsal tunnel. I started on a really low dose and had to increase it gradually. It made me dizzy, tired, fuzzy brained etc. I never did get my dose up high enough for it to help. The side effects were so bad that I had to stop taking it. I have 3 children and one day I got so dizzy out of the blue that I had trouble driving them home from school.
My foot problems were TMS. They started going away after reading Dr. Sarno. I now run 5 days a week. Good luck. |
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chicago
85 Posts |
Posted - 01/12/2007 : 23:02:26
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Hestia,
Just curious, what were your symptoms? How long did it take for them to completely resolve?
Thanks,
Chicago |
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tennis tom
USA
4749 Posts |
Posted - 01/13/2007 : 05:13:47
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From page 249 of Dr. John Sarno's THE DIVIDED MIND :
Quoting Andrea Leonard-Segal, M.D. :
"Their symptoms are often triggered by nothing or a very minor physical incident that could be construed to be normal physical activity. Even though the patient may think he has injured himself, there is no objective evidence to support this contention. For example, the involved area is not bruised, bleeding, swollen, red or exceptionally warm to the touch. The physical complaint does not resolve in a timely way like a true injury; the pain lingers unlike what would occur with a true injury. Further, the patient has no physiologic condition that would interfere with the ability to heal normally and reports that his cuts and brusies heal just fine. A broken bone, a ruptured tendon, or a postoperative site, for example, would heal within a couple of months. That is what our bodies are designed to do; they are resilient. But often, a patient who has experienced a true injury that has healed normally continues to have pain and does not think about the lack of logic of the continuing pain until it is pointed out to him."
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chicago
85 Posts |
Posted - 01/13/2007 : 09:15:09
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| Tennis Tom- Excellent quote. I have responded by following Sarno's thoughts. Neuropathy the term is a very general term meaning nerve involement. Nerve involvement, the type that usally affects the feet first and then possibly your hands is a specific type of neuropathy that can be very painful. It can come on for no apparent reason or one may think it starts with an event like a fall, but it usally doesn't. The main causes are- diabetes, certain chemo drugs, aids drugs, and unknown. Mine is of the unknown variety. I'm convinved its nerve involed but tied into my emotional state. Thus TMS. TMS strategies are the only ones that give me relief not Neurontin, but at times I admit that I have doubts and thats when it hits the hardest. Even if one is DX with neuropathy it only means some type of nerven involement and the true cause might be TMS. What do you think of my line of thought. Take Care! Chicago |
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holly
USA
243 Posts |
Posted - 01/13/2007 : 12:44:43
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Chicago,
I filled the prescription for the heck of it. It was only $10 and figured I give it a try. I am not in excruciating pain at all but just anoying limiting discomfort. I am just going to try this lowest possible dose before bed after this weekend is over. (I am going away)to see if there is any help whatsoever. Like you said if it really works well then there is something going on there. If it makes absolutly no difference well then I am back to where I started. The "neuroma" like symptom turned out to be just more of the neurophy I had after all which I think is for real. I will post what occurs. If it is gonna make me drowsy I can't stay on it anyhow. |
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chicago
85 Posts |
Posted - 01/13/2007 : 15:33:03
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Holly,
I don't think it would hurt to try, however neurologist which I've seen many will want a patient to go up on a dose to see if it has an effect. I went as high as 2400mg, the side effects were too much and it wasn't helping that's why I knew it wouldn't help. If your starting on lets say 300 mg it probably wouldn't have much of an effect but you could monitor to see how you tolerate the side effects. My guess is that if your working with a neurologist they will then increase it by 300 mg. Other doctors are much less aggressive bececause they do not have the experience of working alot with neurontin and neuropathy. I know mine is due to TMS but I have my days. Like today I went to both my kids basketball games and I had burning pain. Its real discouraging for two weeks previously I had no pain at all and now today pain. What I do now is try to remind myself of what's going on and the negative internal messages I'm sending myself. Its really difficult after ten years but it has only been in the last year that I have stopped searching for answers (various medications, doctors etc) and concentrated on TMS. Any advice or encouragement from someone who has been there in their recovery would be appreciated. When its bad I get very negative and this forum really helps me turn things around. Sometimes I think I will never be 100% but each and every week I seem to be improving. Is this a common experience??? I would think so. All the Best!!!!
Chicago |
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dwinsor52
USA
81 Posts |
Posted - 01/14/2007 : 18:50:50
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| I had such pain and sensitivity in my feet that I could not wear socks. I could not wear my shoes without excruciating pain. I posted before about my experience with neurontin - but here is the key: Sarno and his colleagues speak of the absolute necessity of discontinuing all physical treatment in order to get better. For me, that meant that as long as I was on neurontin, I was still going to be in pain because I was not fully believing my pain was TMS. If the pain is purely due to TMS, neurontin will provide at the most a brief placebo effect. Believe me, I have been there. Anyone who is interested in taking neurontin should also read some of the controversy surrounding this drug and how one of the drug company's people was taped telling reps to "push it for pain" not because it worked but because it was a new way to make more money. There was some sort of lawsuit about it, I believe. |
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Littlebird
USA
391 Posts |
Posted - 01/14/2007 : 20:32:26
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Chicago, I stopped having neuro type pain shortly after first learning of TMS. I have other symptoms that I'm still working on, but it's great to not have the burning pain anymore. I had that inner muscle burning, like when you exercise until you feel the burn, plus a sensation on the bottoms of my feet like I was standing barefoot on hot asphalt, plus a sensation on the skin of my right foot and leg like a severe burn injury--you know that feeling of intense pain and heat like if you stick your hand on the hot iron for a while, that "you can get a little relief by putting it under cold water, but as soon as you take it out you have extreme pain again" kind of feeling. That's one of the reasons I was taking Neurontin. It took the edge off. I no longer get that kind of pain, though I still have other general body aching.
Since it comes and goes, it sounds like you are doing the right thing. It seems like many people here spend some time with symptoms being up and down for a while before they go away completely, so odds are good that you'll conquer it for good in time. |
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chicago
85 Posts |
Posted - 01/15/2007 : 11:06:56
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Little Bird,
Thanks for your encouragement. The pain you describe sounds like what I have experienced. On Saturday when I posted I had some pain Sunday it went away and today so far so good. Once I thought about the isssues surrounding the pain it went away. Surely TMS at work. However it has taken me quite a while to really believe that our emotional state can bring about such physical symtoms. It has opened up a new way of me looking at health. I am very much accepting of alternative theraphy. If I had a conversation with myself of ten years ago my old self would have never accepted alternative theraphy. Pain is a great motivator! So in some ways there is a silver lining to having to deal with pain.
Take Care!
Chicago |
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Hestia
21 Posts |
Posted - 01/15/2007 : 22:22:14
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Chicago
Sorry to take so long to respond. I am mostly a lurker. My symptoms started out as heel pain in both feet. Then it progressed to pain all over my feet. Several doctors, physical therapy and 3 different sets of orthotics did not help. Had the heel pain/plantar fasciitis for 1 1/2 years. About a year or so into the plantar fasciitis, I developed tarsal tunnel. I started getting numbness on the bottom of one of my feet. The tarsal tunnel only lasted about 6 months. I probably took the neurontin about a month.
One day I was reading one of my PF sites and someone mentioned Dr. Sarno. It sounded too good to be true but I figured what do I have to lose. So I ordered Healing Back Pain and then started reading it. After about a week or two my feet started getting better and I stopped wearing my orthotics. I was much better within a month. Started exercising regularly and started wearing normal shoes. That was about 2 years ago. I am not perfect. I still struggle with flair ups but my feet are good. I no longer walk in a room with all my focus on where I can sit. I now run 5 days a week. |
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alix
USA
434 Posts |
Posted - 01/16/2007 : 12:27:53
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Yes, I have used Neurontin and it does not work very well or for very long (it stopped working after 3 months when my body got used to it). It for sure transforms you in some sort of a zombie.
It is a drug that was really oversold and pushed by Pfizer in the market. Now that Neurontin is manufactured by generic firms like Teva, Pfizer is pushing Lyrica instead with even more miraculous claims. |
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chicago
85 Posts |
Posted - 01/16/2007 : 19:40:00
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Hestia,
It's great your able to run. I to am getting better from foot pain, but its two steps forward one step back process.
Take Care,
Chicago |
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just curious anyone ever use neurotin??
