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Old 08-20-2011, 07:41 AM #31
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Originally Posted by fractionmeister View Post
Have you considered taking a supplement called Alpha Lipoic Acid? You can find it at your healthfood store. I began at 600 mg XR once a day. After trying this for about a week or two, I was ready to give it up because I felt no relief. On a whim, I took another 600 mg XR 12 hours later and within a day felt massive relief. Every 12 hours is the perfect dosage for me but you might need to play with it and find what works best for you. If you do decide to take it, please remember to drink lots of water with it. It will help you feel better.
Uh.....this thread is 10 months dead.
Why are you responding to it in this manner?
There are ALA threads all over this BB.
I suggest you use the 'search' function on the top bar.
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Old 08-21-2011, 06:21 AM #32
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Originally Posted by nide44 View Post
Uh.....this thread is 10 months dead.
Why are you responding to it in this manner?
There are ALA threads all over this BB.
I suggest you use the 'search' function on the top bar.
Even although it is ten months dead I have got so much out of it Bob. At my last Pain Clinic visit it was suggested I swap Gabapentin for Lyrica but was told I would have to wean myself from 2400mg down to 300mg per day before starting Lyrica- I was terrified of the pain during the weaning process so just dismissed this, I am now going back and telling them I have changed my mind.I may set another thread for advice on the weaning process when the time comes.
Thanks to whoever resurrected this thread it has been helpful to me.
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Old 01-08-2012, 09:30 AM #33
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Originally Posted by EarlG View Post
Yes PN is usually bilteral, but sometimes with more severe pain on one side. I am not sure that this asymmetry may not be due to other factors including arthritis. PN often results in slightly disturbed gait which then can lead to a stress-type osteoarthritis with tendosynovitis. I have this on one side which I can control with Ibuprofen.

Certainly one of the most inexplicable syndrome of this disease is the propensity to worsen at night. Also it may have some association with RLS which is why Mirapex may help. Very interesting!!! Thanks for this idea--jarrett622.
I had vague symptoms similar to RLS before I got the full fury of PN. This may also explain why if I have severe burning getting up and walking around often helps. Of course one has to walk with heavily padded slippers on soft carpets.
Also may explain why the symptoms are generally worse at night.

From the forum I noticed that some of us are taking huge doses of Lyrica (up to 600 mg). I would be very cautious with these doses as we not sure of the effects on the brain (memory loss, bizarre thinking, depression etc.). Also I wonder about effects on other parts of the body. I have notice that moderately high doses of Lyrica causes me to have bouts of Bradycardia. Unfortunately I am quite sure that with time other side effects will be identified.
I am sure most us learn how to manage as best as we can and learn to dose our meds for the best and safest effect. That is what chronic diseases are all about -Management!
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Old 01-08-2012, 09:38 AM #34
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Nope...ya done good!

Bilateral huh? I don't know...guess that might depend on the Dx? My left foot has always been more painful than my right. No idea why. My Dx is idiopathic PN. So far anyway. At some point when and if I can afford more testing I plan on seeking out a specialist in PN. I want more than just the basics ruled out.

Can't take Neurontin. Made me suicidal. So I manage with Tramadol and recently added Mirapex. So my symptoms are well under control for now. Yep, been blessed with PN and apparently some RLS thrown in for good measure.

And yes, we do all we can to reduce our symptoms to levels manageable for us. During the day I'm a 1 or less most of the time. Toward 9:00 or 10:00 PM I escalate to about a 4 or 5 before I take a Tramadol. That's much less than my levels were about a year ago when I first found this wonderful message board.
IN no way shape or form is PN bilateral. My left foot burns and my right foot is merely numb. My left side burns yet feels no external pain and my right side is normal. My right foot toes are all numb. My left foot toes are not as numb. Laminectomies did not help. The source of pain is at the cellular nerve level in the lower back region.
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Old 01-08-2012, 09:54 AM #35
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Angry Bilateral? Nope

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Originally Posted by EarlG View Post
disease peripheral neuropathy. I am a retired physician for many years and I actually retired earlier than planned because of this disorder. Although we cells in the brain. Also many of the side effects are "central" in nature (i.e., in the brain)
Now for treatment. I found that giving a bolus (daily dosage given all at once) seemed to help considerably. There may be a sound biochemical reason for this. By giving a bolus very high blood levels are attained which can then effectively block receptors on the nerve (and brain cells) for a longer period of time. By splitting the daily dosage over 2-3 times a day very high blood levels are never attained since the drug is rapidly cleared from the blood (within 2-4 hours). Now I would recommend this idea only for old veterans like me and then of course only after consultation with your physician. Those of us who have suffered from this disease know that we all search for some satisfatory relief avoiding at all costs using narcotics. Finally I would be amiss if I didn't mention the side effects -- yes dear there are always and always will be side effects to every single medication ever brought to the market. The more dramatic side effects of dizzness, somnolence etc fortunately become less pronounced with time.
In no way shape or form is PN bilateral. If it was it would easily be treated. Ask around and you will find most people suffering more in the left or right foot or leg or side or whatever. It is not at the cellular level at the brain that causes the pain. It is at the lower back region. Spinal cord is the culprit along with damaged nerve cells,even dead nerve cells in the lower back.
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Old 01-08-2012, 12:29 PM #36
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Originally Posted by groskilly View Post
My Doc switched me from Gabapentin to Lyrica about a month ago. The Gabapentin was no longer helping much with my burning feet. I was at 3600mg of Gabapentin. I continued to take the remaining Gabapentin (300mg caps) here and there along with the Lyrica when the burning was bad and it seemed to help. Eventually I ran out of the Gabapetin and the burning became more intense (worse). I told my Doc I was taking both and he said he never heard of anybody doing that and doesn't recommend it.
A couple of questions.
Does it make any sense at all that the 2 drugs would work better in combination ?
I am taking 375mg of Lyrica and would like to increase the dosage. Does Lyrica have a max dose where the effectiveness peaks out like Gabapentin (3600mg) ?

Gerald
All I can tell you is that my relief came only after taking both Lyrica and Neurontin at maximum doses. After 20 years I finally have some relief
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Old 01-08-2012, 02:12 PM #37
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Well, I would have to say, that since there are over 100 causes of neuropathy... some of them are indeed bilateral.

I had bilateral PN in both feet equally and my hands, when I was in my early 30's.... this was due to hypothyroidism.

People who get GBS... a fast progressive peripheral neuropathy have it bilateral too.
It starts in the legs and moves up. It may even paralyze the diaphram, putting the patient on artificial respiration equipment.

Some further information on bilateral neuropathy:
http://www.wisegeek.com/what-is-bila...neuropathy.htm

Quote:
The most common single cause of peripheral neuropathy is diabetes, accounting for about 30% of diagnosed cases in the United States. Other causes can include vitamin deficiencies, exposure to toxins, and systemic infection such as HIV. Excessive alcohol or drug use has also been found to cause neuropathy in some patients. Neuropathy can be a result from a direct injury, and it can also be caused by hereditary conditions such as Charcot-Marie-Tooth disease. In about 30% of diagnosed neuropathy, the cause is unknown.

Early diagnosis of bilateral neuropathy is important to slow the progression of nerve damage, and in some cases, reverse the existing damage before it becomes permanent. Diagnosis is often made by a neurologist after studying the patient's medical history, including any underlying conditions that may contribute to neuropathy. A physical exam in the office may reveal abnormalities in reflex reactions, muscle reactions and grip strength. More detailed testing is sometimes required and may include an electromyogram (EMG) which studies muscle contractions, as well as nerve conduction tests.
I have never seen a paper or comment on bilateral PN that said it had to be identical in each foot or hand/arm. All bilateral means is that symptoms occur on each side of the body.

When I had my EMG on my hands/arms when pregnant, the doctor did it on the worst side...the right hand, because I am right handed.
When the test showed 70-80% loss of function, I was offered steroid injections in both wrists. I opted for only the right, since I was afraid for my baby etc...so I had only one injection so I could at least use my hand.

I only saw good resolution of my feet and hands finally when my hypothyroid issues were medicated with hormone. I still have some residual issues in my feet which are more severe on the left than the right, but they are minor now compared to the past. I consider this residual neuropathy bilateral still.
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Old 01-08-2012, 03:16 PM #38
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MrsD - need advice please. Don't know your email address so apologize for using this method of contacting you. I belong to another PN site that is being clobbered with dozens and dozens of posts totally unrelated to the site. Our Owner doesn't seem to know what to do about it. Do you have any advice? Thanks.
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Old 01-09-2012, 11:43 AM #39
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Quote:
Originally Posted by groskilly View Post
My Doc switched me from Gabapentin to Lyrica about a month ago. The Gabapentin was no longer helping much with my burning feet. I was at 3600mg of Gabapentin. I continued to take the remaining Gabapentin (300mg caps) here and there along with the Lyrica when the burning was bad and it seemed to help. Eventually I ran out of the Gabapetin and the burning became more intense (worse). I told my Doc I was taking both and he said he never heard of anybody doing that and doesn't recommend it.
A couple of questions.
Does it make any sense at all that the 2 drugs would work better in combination ?
I am taking 375mg of Lyrica and would like to increase the dosage. Does Lyrica have a max dose where the effectiveness peaks out like Gabapentin (3600mg) ?

Gerald
I have the same exact situation as you. I am currently taking 3600 of Neurontin but did not get actual relief until I added Lyrica in high doses.
Good Luck
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Old 01-11-2012, 08:55 AM #40
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Originally Posted by mrsD View Post
Well, I would have to say, that since there are over 100 causes of neuropathy... some of them are indeed bilateral.

I had bilateral PN in both feet equally and my hands, when I was in my early 30's.... this was due to hypothyroidism.

...........People who get GBS... a fast progressive peripheral neuropathy have it bilateral too.
It starts in the legs and moves up. It may even paralyze the diaphram, putting the patient on artificial respiration equipment.

........have never seen a paper or comment on bilateral PN that said it had to be identical in each foot or hand/arm. All bilateral means is that symptoms occur on each side of the body.......
My neuro at Hopkins calls it polyneuropathy as opposed to mononeuropathy. The poly.. form meets the bilateral interpretation and the mono form means only one side. I have polyneuropathy in my feet and legs that is approximately equal, but the CTS in my right wrist is much worse than the left.
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