Aa
Night and Day
I wanted to share some really great news.
VERY brief review: For the last 4 months, I've been discomforted night and day with symptoms such as burning sensations, pains, flashing lights/ghosting in my vision, disrupted concentration,..... I've been taking neurontin for a few weeks.
I saw my neruo yesterday, and he confirmed what I learned by phone: My MRI is unchanged since Feb! Also, since late last week, I have been going up, up UP in terms of comfort and symptom relief. I mean, the difference is Night and Day. My legs aren't heavy, the burning is mostly gone, no twitching, I mean, whoa, I feel amazingly better. I've had no trouble diving back into my life.
My neuro is very pleased about my stable MRI and symptom improvement. He thinks that I'm going to be ok, that this is a one-time thing, and that I do not have to worry about progression. He said my improvement lines up well with how long the neurontin would take to really work. I told him some symptoms were responding better then others, but he said to give it some more time. He says we may not know what caused all of this. The plan is to let the neurontin keep working until more of the symptoms stop, continue taking it for ~1 more month, then come off and see how it goes. I don't know how I could be more satisfied with this outcome.
While I admit that I can not yet fully embrace his positive outlook for my future, my concerns are fading and will hopefully subside. In all honesty, in the worst-case scenario that this event is an early sign of a larger problem, I would still rather proceed planning for my life hoping for the best. I could not think that way while I was in pain, and am ecstatic to be capable of optimism again.
I am just amazed at this. I spoke with him a bit how since nerve pain occurs differently than regular pain, so all of the rules are different! No wonder aspirin and OTC painkillers didn't help with my symptoms. I am floored. I honestly feel like the 1st half of 2008 was taken from me by this (I had a first episode in Jan, and only 4-6 "good" weeks between that and my 4-month stint/
How fortunate I am. I almost did not want to post this, as I know not everyone can be so lucky. But I did think it might serve to help others searching. Over the course of 7 months, I saw (yes THREE) neurologists, 2 psychologists, 1 psychiatrist, an ophthalmologist, and went back to my GP countless times. Neuro #1 said my symptoms were from stress and "dumped" me (told me not to come back). The 3 therapists all said separately that I needed a second opinion from a neuro, and my GP agreed. Fine. Neuro #2 was lazy. He did not look at my MRIs, then told me this might be "something in the spectrum of Fibromyalgia," offered no treatment, and told me to come back in a few months. He sent me away while I was symptomatic and in pain, unable to properly perform my work responsibilities, with no treatment. I found that unacceptable. My ophthalmologist recommended Neuro #3, who immediately assessed that my discomforts were stemming from my nerves, not my emotions. He also took my MRI abnormalities seriously as I am 29 and have no known conditions for them to be there. Now, 900 mg/day of neurontin for a few weeks and WOW. Everything is falling back into place.
I'm sure many can understand how emotional the past several months have been. On the plus side, this "adventure" led me to quit smoking, drinking, change my exercise and eating habits. My BP went from 135/95 to 114/72, and I have drooped 24 lbs (and counting). I have also experienced other less tangible changes.
I know this event has changed me for life. I deeply thank all of you for the time and energy that went into your support. If you don't hear from me much on this forum, take it as a good sign. I think I'm going to look into MedHelp groups focused on eating well and exercise as I continue my journey toward better health.
Whether you are still looking for the right doctor, or coping with your answers, I'll always be sending my best thoughts and wishes to those on this forum.
Take care,
Wonko (the Sane)
VERY brief review: For the last 4 months, I've been discomforted night and day with symptoms such as burning sensations, pains, flashing lights/ghosting in my vision, disrupted concentration,..... I've been taking neurontin for a few weeks.
I saw my neruo yesterday, and he confirmed what I learned by phone: My MRI is unchanged since Feb! Also, since late last week, I have been going up, up UP in terms of comfort and symptom relief. I mean, the difference is Night and Day. My legs aren't heavy, the burning is mostly gone, no twitching, I mean, whoa, I feel amazingly better. I've had no trouble diving back into my life.
My neuro is very pleased about my stable MRI and symptom improvement. He thinks that I'm going to be ok, that this is a one-time thing, and that I do not have to worry about progression. He said my improvement lines up well with how long the neurontin would take to really work. I told him some symptoms were responding better then others, but he said to give it some more time. He says we may not know what caused all of this. The plan is to let the neurontin keep working until more of the symptoms stop, continue taking it for ~1 more month, then come off and see how it goes. I don't know how I could be more satisfied with this outcome.
While I admit that I can not yet fully embrace his positive outlook for my future, my concerns are fading and will hopefully subside. In all honesty, in the worst-case scenario that this event is an early sign of a larger problem, I would still rather proceed planning for my life hoping for the best. I could not think that way while I was in pain, and am ecstatic to be capable of optimism again.
I am just amazed at this. I spoke with him a bit how since nerve pain occurs differently than regular pain, so all of the rules are different! No wonder aspirin and OTC painkillers didn't help with my symptoms. I am floored. I honestly feel like the 1st half of 2008 was taken from me by this (I had a first episode in Jan, and only 4-6 "good" weeks between that and my 4-month stint/
How fortunate I am. I almost did not want to post this, as I know not everyone can be so lucky. But I did think it might serve to help others searching. Over the course of 7 months, I saw (yes THREE) neurologists, 2 psychologists, 1 psychiatrist, an ophthalmologist, and went back to my GP countless times. Neuro #1 said my symptoms were from stress and "dumped" me (told me not to come back). The 3 therapists all said separately that I needed a second opinion from a neuro, and my GP agreed. Fine. Neuro #2 was lazy. He did not look at my MRIs, then told me this might be "something in the spectrum of Fibromyalgia," offered no treatment, and told me to come back in a few months. He sent me away while I was symptomatic and in pain, unable to properly perform my work responsibilities, with no treatment. I found that unacceptable. My ophthalmologist recommended Neuro #3, who immediately assessed that my discomforts were stemming from my nerves, not my emotions. He also took my MRI abnormalities seriously as I am 29 and have no known conditions for them to be there. Now, 900 mg/day of neurontin for a few weeks and WOW. Everything is falling back into place.
I'm sure many can understand how emotional the past several months have been. On the plus side, this "adventure" led me to quit smoking, drinking, change my exercise and eating habits. My BP went from 135/95 to 114/72, and I have drooped 24 lbs (and counting). I have also experienced other less tangible changes.
I know this event has changed me for life. I deeply thank all of you for the time and energy that went into your support. If you don't hear from me much on this forum, take it as a good sign. I think I'm going to look into MedHelp groups focused on eating well and exercise as I continue my journey toward better health.
Whether you are still looking for the right doctor, or coping with your answers, I'll always be sending my best thoughts and wishes to those on this forum.
Take care,
Wonko (the Sane)
I'm glad to hear from you, but I'm sorry you're feeling a bit off and getting some numbness. I bet your hypothesis about the nerves misfiring instead of being damaged is correct--why else would your face and the inside of your mouth be numb? Why are you having vision problems?
Is it hot where you live right now? I wonder if summer is having an effect on you . . . Here it is unbelievably hot with temperatures around 107. I'm feeling drunk without having the benefit of drinking a cold tasty beverage!
Speaking of numbness in the mouth and cold beverages . . . I noticed a really odd thing about a year ago. When I drink really cold drinks or eat something cold, my tongue and mouth are numb and I can't talk!!!!!! My tongue is paralyzed. Crazy disease!!!! I have to make sure that I'm not drinking something cold before meetings at work or when I have to speak in front of others, because otherwise, it makes my appear that my IQ is down by several points.
Anyway, I don't mean to make light of this problem. I can see why this makes you afraid and a bit nervous. Just know that there's lots of us here on the forum that are wishing you the best and ready for you in times like this.
Deb
Is it hot where you live right now? I wonder if summer is having an effect on you . . . Here it is unbelievably hot with temperatures around 107. I'm feeling drunk without having the benefit of drinking a cold tasty beverage!
Speaking of numbness in the mouth and cold beverages . . . I noticed a really odd thing about a year ago. When I drink really cold drinks or eat something cold, my tongue and mouth are numb and I can't talk!!!!!! My tongue is paralyzed. Crazy disease!!!! I have to make sure that I'm not drinking something cold before meetings at work or when I have to speak in front of others, because otherwise, it makes my appear that my IQ is down by several points.
Anyway, I don't mean to make light of this problem. I can see why this makes you afraid and a bit nervous. Just know that there's lots of us here on the forum that are wishing you the best and ready for you in times like this.
Deb
Hi Everyone,
Well, sometime has passed ('ve been lurking, but not posting) and I wanted to update my status.
From the beginning when this (my symptoms) started, I promised myself that I would tell my whole story on a forum such as this, so that others going through these symptoms and tests would be able read about it. That's even one of the many reasons why I've tried to be a good example through lifestyle changes: I want my doctors, my family & loved ones, and anyone else who reads my story to know that I am doing everything I can to be well.
The neurontin knocked my symptoms down, but not out. I've head ear pain since March, and have had my ears checked for infection many times since then. Finally, an infection DID turn up. I was give antibacterial drops with local steroids, and that worked well. Things were still looking up and my symptoms were only bothering me a little bit, in particular when I lay flat (as they always have, which has always puzzled me, but seen as insignificant by my docs).
I am amidst a high-stress period at work: I am up against a manuscript submisstion deadline, and in 2 weeks, I have back-to-back conferences in Philly PA, and Stanford, CA, and am giving talks at both. This, along with the ear infection, must have started to get to me, because since last Wed or so, my symptoms started to light up and become noticable through the medication. I first noticed my vision getting worse again, then the tingling, then burning and pains. My thumb joints are stiff and painful, and my legs feel heavy. I'd still pass a neuro exam with flying colors, but I feel off to me.
I went to my physician, as my next neuro appt is not until fall and I really don't know what more he could do for me. I asked my PCP if there are other meds to try, and she mentioned Lyrica, but then said since 900 mg/day neurontin had worked well for a bit, we'd try upping the dose. I'm at 1200 mg/day now, and she said she'd take it up to 3600 mg/day if needed. I hope that is not needed, as I don't want to push my luck so far of not having side effects.
So I am back to waiting, to see if the higher dosage works. I just started it Friday, and since it took a couple of weeks for me to really see it work before, I figure it'll take several days at least for the new dose to level out. Then, if the dosage works, I need to stay on the medication for a month, and then taper off.
The working hypothesis is still that this whole event, that became severe enough for me to go to the doctor in Jan, but really started last summer, is NOT nerve damage. My nerves are just confused and misfiring (for some unknown mysterious reason), and for another mysterious reason, they just keep doing it more and more, making me feel worse and worse.
I woke up in the middle of last night (again, my symptoms are worse lying down, so I often awake to an unpleasent state) and was rather discouraged because I could not feel my face. I swallowed, I think, but I could not feel the inside of my mouth. I got up and paced a bit, and the feeling returned.
I'm still trying to be optimistic, but I am a bit afriad. I hope in a few weeks I will look back and note this time as a small bump in the road, but right now my balance of optimism and realism is a bit shaken.
Thanks for "listening."
Well, sometime has passed ('ve been lurking, but not posting) and I wanted to update my status.
From the beginning when this (my symptoms) started, I promised myself that I would tell my whole story on a forum such as this, so that others going through these symptoms and tests would be able read about it. That's even one of the many reasons why I've tried to be a good example through lifestyle changes: I want my doctors, my family & loved ones, and anyone else who reads my story to know that I am doing everything I can to be well.
The neurontin knocked my symptoms down, but not out. I've head ear pain since March, and have had my ears checked for infection many times since then. Finally, an infection DID turn up. I was give antibacterial drops with local steroids, and that worked well. Things were still looking up and my symptoms were only bothering me a little bit, in particular when I lay flat (as they always have, which has always puzzled me, but seen as insignificant by my docs).
I am amidst a high-stress period at work: I am up against a manuscript submisstion deadline, and in 2 weeks, I have back-to-back conferences in Philly PA, and Stanford, CA, and am giving talks at both. This, along with the ear infection, must have started to get to me, because since last Wed or so, my symptoms started to light up and become noticable through the medication. I first noticed my vision getting worse again, then the tingling, then burning and pains. My thumb joints are stiff and painful, and my legs feel heavy. I'd still pass a neuro exam with flying colors, but I feel off to me.
I went to my physician, as my next neuro appt is not until fall and I really don't know what more he could do for me. I asked my PCP if there are other meds to try, and she mentioned Lyrica, but then said since 900 mg/day neurontin had worked well for a bit, we'd try upping the dose. I'm at 1200 mg/day now, and she said she'd take it up to 3600 mg/day if needed. I hope that is not needed, as I don't want to push my luck so far of not having side effects.
So I am back to waiting, to see if the higher dosage works. I just started it Friday, and since it took a couple of weeks for me to really see it work before, I figure it'll take several days at least for the new dose to level out. Then, if the dosage works, I need to stay on the medication for a month, and then taper off.
The working hypothesis is still that this whole event, that became severe enough for me to go to the doctor in Jan, but really started last summer, is NOT nerve damage. My nerves are just confused and misfiring (for some unknown mysterious reason), and for another mysterious reason, they just keep doing it more and more, making me feel worse and worse.
I woke up in the middle of last night (again, my symptoms are worse lying down, so I often awake to an unpleasent state) and was rather discouraged because I could not feel my face. I swallowed, I think, but I could not feel the inside of my mouth. I got up and paced a bit, and the feeling returned.
I'm still trying to be optimistic, but I am a bit afriad. I hope in a few weeks I will look back and note this time as a small bump in the road, but right now my balance of optimism and realism is a bit shaken.
Thanks for "listening."
Hi there and I would like to say THANK YOU SOOOOOOO MUCH for posting this!!!!
I am in a flare and so freakin uncomfortable with no relief from anything I am taking and am seeing a MS specialist next week for my 5th (yes I said 5th!!) neuro consult since this all began last year. Your description is exactly what I am feeling right now along with a feeling like I am gonna jump out of my skin and a burning pain in the top of my head.
I cannot tell you how much hope you have given me tonight and I am eternally grateful you have shared your experience with us all. I pray that things continue to stabilize for you and that you never have these Sx again!!
Love and Hugs!!
Kristin
I am in a flare and so freakin uncomfortable with no relief from anything I am taking and am seeing a MS specialist next week for my 5th (yes I said 5th!!) neuro consult since this all began last year. Your description is exactly what I am feeling right now along with a feeling like I am gonna jump out of my skin and a burning pain in the top of my head.
I cannot tell you how much hope you have given me tonight and I am eternally grateful you have shared your experience with us all. I pray that things continue to stabilize for you and that you never have these Sx again!!
Love and Hugs!!
Kristin
Go Wonko! So glad to read this. I hope your symptoms are gone for good. You have a great attitude, with optimism and realism combined.
Yes, pursue other forums, but don't forget your friends here. Best of luck!
ess the semi-sane
Yes, pursue other forums, but don't forget your friends here. Best of luck!
ess the semi-sane
Is Neuronti similar to Kepra as far as how it may be used for spasms? I remember being given Kepra in the hospital for the leg spasms, but for some reason they didn't send me home with a script for it. It worked, but made me very very sleepy. Does Neurontin have the same effects? Like Wonko, I need something to deal with the pain so its not so distracting when I'm working. I would be in heaven if this could work for me.
Julie
Julie
No, You should not build up a tolerance to Neurontin. It was developed as an anti-seizure medication and only began to be used with neuropathic pain and paresthesias later. Generally the same dose works for a long time barring weight gain or a change in the number or intensity of the nerve signals.
Quix
Quix
I'm with Ada...Your post made my whole day too!!! What a relief it is to finally get relief. Not to put a damper on it, cuz I am excited for you and hopeful that maybe this might be a good rout for me as well, but do you know if there is any resistance that the body builds up from taking neurontin?
Have a wonderful and peaceful weekend and thanks again for sharing your news.
-Julie (Sarahsmom46)
Have a wonderful and peaceful weekend and thanks again for sharing your news.
-Julie (Sarahsmom46)
Sweetheart, this post made my day!!! I am so happy that you are feeling better and are getting your life back. But, remember once your family, your always family!!! I echo Quix and Zilla, please pop in and tell us how your doing? I hope that this wellness stays with you and I have to tell ya the dust doesn't taste to well with you runnin' off :) You are such a wonderful friend and I am just so happy for you, Sweetie. Please keep in touch!!!
Love Ya,
Ada
Love Ya,
Ada
I'm SO happy that you're feeling better, and have new hope!!! Your post sounds SO full of excitement and amazement. I am thrilled for you!
PLEASE continue to peek in and let us know how things are going for you. I would hate to think that you're leaving us in your dust!
Continue to feel better and better, Wonk!
Love,
Zilla*
PLEASE continue to peek in and let us know how things are going for you. I would hate to think that you're leaving us in your dust!
Continue to feel better and better, Wonk!
Love,
Zilla*
I couldn't be happier! What a nice post that was! I read it with ever-growing elation and pride. You are doing just what you need to. Except that we need a weekly report on your health and progress.
Yes, this might be just a "remission" of something else. But, I agree to take it and build your health. May I suggest getting a Vit D level and supplementing with 2000 IU if it is in the low range. Aim for well over 35.
Outstanding! But, don't leave us forever. I know in my heart that you are a friend and "Friends don't leave."
Peace, my friend,
Quix
Yes, this might be just a "remission" of something else. But, I agree to take it and build your health. May I suggest getting a Vit D level and supplementing with 2000 IU if it is in the low range. Aim for well over 35.
Outstanding! But, don't leave us forever. I know in my heart that you are a friend and "Friends don't leave."
Peace, my friend,
Quix
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