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Old 06-22-2010, 06:03 AM #1
daniella daniella is offline
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Hi. I am on neurontin and many times a dose needs to be up to 3500 I think that what was my pain doc said for adequate pain relief. When I was increasing it was 300 at a time and now am up to 2700. I am stuck there since I hate the side effects with each increase and more so at the higher doses. Sometimes a more of combo of meds is needed too. I had a nerve block which did not help me but some it does. Did you have an mri of the brain and spine? Have you looked at the rsd board? Why I ask is cause the burning and also how you were a runner plus the unexplained pain. I have PN and RSD. It is important to find the why but sometimes for me that has not been found and I am diagnosticly tested out so the next step was pain treatment. That is where a good pain doctor who is an anestesolgist comes in. Have you see one cause who was going to preform the block? I would see one because they could give you better direction on meds and other treatment but also may give you driection on more what is going on.
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Old 06-22-2010, 06:38 AM #2
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Default Would be a good idea--

--if you could post those test results, so we can discuss them.

It doesn't sound like you've had very comprehensive testing for neuropathy, though; most of the testing you've had so fatrseems to have focused on mechanical problems of your lower extremities, but as has been pointed out, the cause may be higher up (spine) or even systemic and just showing up first in the nerves farthest from the center of the body--many neuropathies have this "length-dependent die back" pattern of symptoms.

As always, I recommend the Liza Jane spreadsheets as a comprehensive listing of tests for possible neurological problems, as well as a good way to track test results over time:

www.lizajane.org

Unfortunately, foot symptoms can be similar whether the damage process is located right there, higher up, or systemically--it's why the search for causes is often a long (and expensive) one of exclusion.
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Old 06-22-2010, 07:20 AM #3
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Lightbulb

I'd get the numbers for the B12 test, and also make sure you have a Vit D test. Many people showing up on Neurotalk's various boards are testing low in D. Some very LOW. When doctor's say "normal" don't believe them, since many lab ranges still being used are antiquated and new guidelines remain ignored. You should be at 400 at least for B12 and at 50-80ng for D.

Also were you evaluated for peripheral artery disease?
Cold extremities would be an early sign of this.

Spasms in the blood vessels may occur if you are low in magnesium. Magnesium dilates smooth muscle in the blood vessels. Try soaking in epsom salts in lukewarm water twice a day and see if this improves. If you find you like it, you can then move on to oral magnesium.

My magnesium thread, on details and how to choose a good supplement that works (magnesium OXIDE does not).
http://neurotalk.psychcentral.com/thread1138.html
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Old 06-22-2010, 07:36 AM #4
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Originally Posted by mrsD View Post
I'd get the numbers for the B12 test, and also make sure you have a Vit D test. Many people showing up on Neurotalk's various boards are testing low in D. Some very LOW. When doctor's say "normal" don't believe them, since many lab ranges still being used are antiquated and new guidelines remain ignored. You should be at 400 at least for B12 and at 50-80ng for D.
Will post those numbers soon but recall them to be normal. Of course one doc conceded they really don't know what is normal. So I am taking B Complex 1000mg B12 per day. I don't think I was tested for Vitamin D. Is there any risk to just supplementing on that, and what levels should I take?

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Also were you evaluated for peripheral artery disease?
Cold extremities would be an early sign of this.
I have always had cold extremities even as a kid, so I have blown that off. I was beginning to think I should perhaps see a Cardiologist just to eliminate anything there.

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Spasms in the blood vessels may occur if you are low in magnesium. Magnesium dilates smooth muscle in the blood vessels. Try soaking in epsom salts in lukewarm water twice a day and see if this improves. If you find you like it, you can then move on to oral magnesium.

My magnesium thread, on details and how to choose a good supplement that works (magnesium OXIDE does not).
Something odd I have noticed is random muscle spasms which have somewhat gone away from either the B complex, gabapentine. Thanks for the post I was thinking perhaps I should look into Magnesium as well.
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Old 06-22-2010, 07:53 AM #5
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Hi Dave,
Just a quick addendum to MrsD's note here on magnesium.
My feet ar both toasty warm this AM in a very air conditioned room!
I have recently had trouble with vasospasms in my feet and in my left hand (after a small surgery on my left arm--nerve issues).
I have noticed how warm my feet are this AM and were all night!
My left hand looks better and operates better, too!
This is after two doses of an inonic fizz magnesium.
I cannot say if this will be helpful to you. I did want to share this with you, however.

Again, welcome!
~DejaVu
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Old 06-23-2010, 05:48 AM #6
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Lightbulb

Here are some Vit D suggestions:

http://neurotalk.psychcentral.com/thread92116.html

If you do not get outside and in the sun for a while each day, the general suggestion is to start at 2000IU daily.

But testing is really the way to go.

At the end of that thread, is a cardiologist's suggestion to limit calcium supplement when taking high dose D3. Since Vit D improves calcium absorption from food, I think his advice is good.
He is the first one I've seen on the net make that suggestion.
It is something to think about.

But very low Vit D is showing up frequently now, and estimates are 1/2 the US population is low. There are studies linking low D to chronic pain states, among other things.
(estimates for low magnesium are about 70% needing supplements in US)
Here is my supplement page with more info about D also:
http://neurotalk.psychcentral.com/thread121683.html
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Old 06-23-2010, 07:00 AM #7
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Default Length-dependent die-back

--refers to a common pattern of onset of neuropathic symptoms in which the nerves at the farthest extremities of the body experience compromise first--these are farthest from the seat of circulation/respiration, and it takes more energy to transport nutrients/oxygen to them and remove wastes from them, so if there is some sort of difficulty in overall bodily circulation, as happens in diabetes and other ischemic conditions such as the anti-nuclear antibody autoimmunities, these nerves tend to be affected first, and if the conditon is unchecked, in time nerves closer to the body center begin to be affected, so the nerves seem to be "die-ing back".

Many people first report their neuropathies present in a "stocking-glove" distribution--first the toes are affected, then the feet, then the fingertips, then the calves, then the hands. This is a result of gradual die-back due to circulatory compromise.
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Old 06-23-2010, 09:18 AM #8
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The side effects I had with increasing were dizzy,nausea,pressure on my head like I have a tight hat on. As for the block. Is this a sympathetic nerve block? What doctor suggested this? Is he an anesestologist? Are you increasing neurontin weekly? See my block was for my RSD. It was not mentioned for PN and I rarely hear people who have PN have it. I am not saying you should or should not. With my doctors first was meds,then blocks,then more invasive. I have read though blocks work best early in treatment. So I don't know and of course it is a personal choice.
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Old 06-22-2010, 07:23 AM #9
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Quote:
Originally Posted by glenntaj View Post
--if you could post those test results, so we can discuss them.
Will do as soon as I can.


Quote:
Originally Posted by glenntaj View Post
It doesn't sound like you've had very comprehensive testing for neuropathy, though; most of the testing you've had so fatrseems to have focused on mechanical problems of your lower extremities, but as has been pointed out, the cause may be higher up (spine) or even systemic and just showing up first in the nerves farthest from the center of the body--many neuropathies have this "length-dependent die back" pattern of symptoms.
You are correct. Until recently, I have assumed there was a mechanical nerve entrapment, but now I am beginning to think not. It doesn't sound good, but what is "length-dependent die back"?

Quote:
Originally Posted by glenntaj View Post
As always, I recommend the Liza Jane spreadsheets as a comprehensive listing of tests for possible neurological problems, as well as a good way to track test results over time:

Unfortunately, foot symptoms can be similar whether the damage process is located right there, higher up, or systemically--it's why the search for causes is often a long (and expensive) one of exclusion.
Thanks. These will help me keep organized.
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Old 06-22-2010, 07:17 AM #10
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Did you have an mri of the brain and spine? Have you looked at the rsd board? Why I ask is cause the burning and also how you were a runner plus the unexplained pain. I have PN and RSD. It is important to find the why but sometimes for me that has not been found and I am diagnosticly tested out so the next step was pain treatment. That is where a good pain doctor who is an anestesolgist comes in. Have you see one cause who was going to preform the block? I would see one because they could give you better direction on meds and other treatment but also may give you driection on more what is going on.
I have heard that upping the dose comes with some nasty side effects. So far I have experienced none. What are yours?

I have had not x-rays nor MRI of the lower spine. I recall there being some issue with mild scoliosis when I was a kid but mom doesn't recall that, so I hope to follow up with that. My pain doctor is the one who also will do the nerve block.

Do you think it wise to see how far gabapentin will take me before I do the nerve block?
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