Anyone have any experiences with Neuropathy?

MickeysMommy

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My mom is suffering with this in her feet and ankles. She is on her third medication that I hope will have some positive effect on her soon. She feels like she is walking on pebbles/stones and is a bit wobbly. I call her my Weeble :)

Anyone else have any experiences? What meds worked or didn't work for you?
 
My dad has neuropathy in his feet, and he has taken Lyrica for the past few years. While it doesn't completely relieve the pain, it definately helps. He can certainly tell if he takes it late. He's currently taking it every 8 hours --- 8am, 3pm, and bedtime. He was on Neurontin before, but it became less effective over time.
 
My dad has neuropathy in his feet, and he has taken Lyrica for the past few years. While it doesn't completely relieve the pain, it definately helps. He can certainly tell if he takes it late. He's currently taking it every 8 hours --- 8am, 3pm, and bedtime. He was on Neurontin before, but it became less effective over time.

Mom just started the Lyrica last month and just this past Friday upped it to 2 pills a day and will then increase it to 3. The Neurontin made her loopy. Thanks for your reply - I'll let her know.
 
I have a little bit of a different experience but I thought I'd share anyway.

Last year I started have a tingling sensation in my hands and feet... as if they were "asleep" all day, every day, to the point of pain. After a bunch of tests they wrote it up to peripheral neuropathy. My doctor put me on muscle relaxants, since she thought it might be a pinched nerve type situation -- didn't help. Sent me to a chiropractor -- didn't help.

Around the same time I also started getting treated for depression, and once I started meds, the tingling went away. My doctor said that it could be two things; either the tingling was actually a symptom of untreated depressing or the depression meds actually helped it (which does work sometimes). FWIW, I'm on Wellbutrin/Aplenzin (same thing really).
 

My mom is suffering with this in her feet and ankles. She is on her third medication that I hope will have some positive effect on her soon. She feels like she is walking on pebbles/stones and is a bit wobbly. I call her my Weeble :)

Anyone else have any experiences? What meds worked or didn't work for you?

My mom was also on Neurontin and exactly what other pps have said, it becomes less effective over time. I hope she can find a medication that will work well for your mom. Neuropathy can become so painful. :hug:to your mom!
 
Does she get a B-12 shot? Those are recommended for this as well as. My dad has it awful, and my aunt had it even worse. She was pretty much crippled from it. Couldn't walk at all because it went all the way to her hips.

Anyway, I am so sorry your mom has this disease. From what I understand, there is no cure, only things that can help (a little) with symptoms and maybe slow the progression a bit.
 
I'm going to assume she has neuropathy from Diabetes? If so.. make sure her sugars OK - that's the MOST important thing:

Here are some alternative things other than just Lyrica/Neurontin, etc:

Benfotiamine is a transketolase activator that reduces tissue AGEs. Several independent pilot studies have demonstrated its effectiveness in diabetic polyneuropathy. The BEDIP 3-week study demonstrated subjective improvements in neuropathy scores in the group that received 200 mg daily of benfotiamine tablets, with a pronounced decrease in reported pain levels (91). In a 12-week study, the use of benfotiamine plus vitamin B6/B12 significantly improved nerve conduction velocity in the peroneal nerve along with appreciable improvements in vibratory perception. An alternate combination of benfotiamine (100 mg) and pyridoxine (100 mg) has been shown to improve diabetic polyneuropathy in a small number of diabetic patients (92)

91. Haupt E, Ledermann H, Kopcke W: Benfotiamine in the treatment of diabetic polyneuropathy--a three-week randomized, controlled pilot study (BEDIP study). Int J Clin Pharmacol Ther 43:71-77, 2005

92. Stracke H, Lindemann A, Federlin K: A benfotiamine-vitamin B combination in treatment of diabetic polyneuropathy. Exp Clin Endocrinol Diabetes 104:311-316, 1996

Alpha-Lipoic acid or thioctic acid has been used for its antioxidant properties and for its thiol-replenishing redox-modulating properties. A number of studies show its favorable influence on microcirculation and reversal of symptoms of neuropathy (98-101). A meta-analysis including 1,258 patients from four randomized clinical trials concluded that 600 mg of i.v., α-Lipoic acid daily significantly reduced symptoms of neuropathy and improved neuropathic deficits (102). The recently published SYDNEY 2 trial showed significant improvement in neuropathic symptoms and neurologic deficits in 181 diabetic patients with 3 different doses of α-Lipoic acid compared to placebo over a 5-week period (103). The result of the NATHAN study, which examined the long-term effects on electrophysiology and clinical assessments, presented at the 2007 ADA meeting, showed that 4-year treatment with α-lipoic acid in mild to moderate DSP is well tolerated and improves some neuropathic deficits and symptoms, but not nerve conduction (104)

98. Ametov AS, Barinov A, Dyck PJ, Hermann R, Kozlova N, Litchy WJ, Low PA, Nehrdich D, Novosadova M, O'Brien PC, Reljanovic M, Samigullin R, Schuette K, Strokov I, Tritschler HJ, Wessel K, Yakhno N, Ziegler D: The sensory symptoms of diabetic polyneuropathy are improved with alpha-lipoic acid: the SYDNEY trial. Diabetes Care 26:770-776, 2003

99. Ruhnau, K. J., Meissner, H. P., Finn, R., Reljanovic, M., Lobisch, M., Schutte, K., Nehrdich, D., Tritschler, H., Mehnert, H., and Ziegler, D. Effects of 3-week oral treatment with the antioxidant thioctic acid (alpha-lipoic acid) in symptomatic diabetic polyneuropathy. Diabet Med 16(12), 1040-1043. 1999.

100. Ziegler D, Hanefeld M, Ruhnau KJ, Meissner HP, Lobisch M, Schutte K, Gries FA: Treatment of symptomatic diabetic peripheral neuropathy with the anti-oxidant alpha-lipoic acid. A 3-week multicentre randomized controlled trial (ALADIN Study). Diabetologia 38:1425-1433, 1995

101. Reljanovic, M., Reichel, G., Rett, K., Lobisch, M., Schuette, K., Moller, W., Tritschler, H. J., and Mehnert, H. Treatment of diabetic polyneuropathy with the antioxidant thioctic acid (alpha-lipoic acid): a two year multicenter randomized double-blind placebo-controlled trial (ALADIN II). Alpha Lipoic Acid in Diabetic Neuropathy. Free Radic Res 31(3), 171-179. 1999.

102. Ziegler D, Nowak H, Kempler P, Vargha P, Low PA: Treatment of symptomatic diabetic polyneuropathy with the antioxidant alpha-lipoic acid: a meta-analysis. Diabet Med 21:114-121, 2004

103. Ziegler D, Ametov A, Barinov A, Dyck PJ, Gurieva I, Low PA, Munzel U, Yakhno N, Raz I, Novosadova M, Maus J, Samigullin R: Oral treatment with alpha-lipoic acid improves symptomatic diabetic polyneuropathy: the SYDNEY 2 trial. Diabetes Care 29:2365-2370, 2006

104. Ziegler D, Low PA, Boulton AJ, Vinik AI, Freeman R, Samigullin R, Tritschler H, Munzel U, Maus J, Schuette K, Dyck PJ: Effect of 4-Year Antioxidant Treatment with alpha-Lipoic Acid in Diabetic Polyneuropathy: The NATHAN 1 Trial. (Abstract). Diabetes 56:A2, 2007

There are other meds too (Duloxetine) which is a serotonin-norepinephrine reuptake inhibitor is "FDA" approved, if that means anything to you :) Sometimes people need a combination of anticonvulsant (Neurontin, Topamax, Lyrica [by the way, you know lyrica is just similar to neurontin right? Pregabalin and gabapentin]) with something else too.

Also.. since you said she's 'wobbly':

Large-fiber neuropathy is manifested by reduced vibration perception and position sense, weakness and muscle wasting and depressed deep-tendon reflexes. Diabetic patients with large-fiber neuropathies are uncoordinated and ataxic, and are 17-times more likely to fall than their non-neuropathic counterparts (139). It is important, therefore, to improve strength and balance in patients with large-fiber neuropathy. Patients can benefit from high-intensity strength training by increasing muscle strength, improving coordination and balance, and thus reducing falls and fracture risks (140). Low-impact activities such as Pilates, yoga, and Tai Chi—which emphasize muscular strength and coordination, and challenge the vestibular system—may also be particularly helpful. In addition, options to prevent and correct foot deformities are available, for example orthotics, surgery and reconstruction.
 
My Dad past away from that almost 2 months ago:guilty: started off on his feet moved up and got to the point where it destroyed his pancreas
 
Neurontin, three times a day, 100 mg. It does help, but doesn't take all the pain away.

And this is one super odd thing that does help: I rub Viks Vapo Rub into the area. I have no clue why this relieves the pain but it works for me. :)
 
Vicks has 'menthol' which is the same thing in icy hot.. i would guess the 'cooling' feeling, might help some 'burning' that people/nerves feel.. but, it is definetly not a long-term thing/not the best... even capsaicin cream is probably better than that in the long-term

Small unmyelinated C-fiber damage gives rise to burning or lancinating pain often accompanied by hyperalgesia and dysesthesia. Peripheral sympathetic fibers are C fibers, too, and spontaneous firing or activation exacerbates the pain, which can be blocked with systemic administration of the a2-adrenergic agonist Clonidine. It can be applied topically, but the dose titration may be more difficult (113). These nerve fibers are peptidergic carrying substance P as the neurotransmitter. Depletion of substance P with local application of capsaicin abolishes transmission of painful stimuli to higher centers (114). Capsaicin is extracted from chili peppers, and a simple cheap mixture is to add one to three tea-spoons of cayenne pepper to a jar of cold cream and apply to the area of pain. Prolonged application of capsaicin depletes stores of substance P, and possibly other neurotransmitters, from sensory nerve endings. This reduces or abolishes the transmission of painful stimuli from the peripheral nerve fibers to the higher centers (114). Care must be taken to avoid eyes and genitals, and gloves must be worn. Because of capsaicin's volatility it is safer to cover affected areas with plastic wrap. There is initial exacerbation of symptoms followed by relief in 2 to 3 weeks.

114. Rains C, Bryson HM: Topical capsaicin. A review of its pharmacological properties and therapeutic potential in post-herpetic neuralgia, diabetic neuropathy and osteoarthritis. Drugs Aging 7:317-328, 1995
 
No, she does not have diabetes. We are not exactly sure how this happened but she has spinal stenosis and had surgery for this in February. The stenosis is the narrowing of the canal around the cord and maybe the pressure on the nerve caused it.

I am really hoping that the Lyrica works for her. :sad2:
 


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