It's been a bit quiet on this forum recently. Everyone must be enjoying the spring.
I've written a fair amount about my neuropathic pain in the past. I never took medication to help manage it until it started getting significantly worse about six months ago. So far this year, I've tried gabapentin (titrated up to 450 mg), amitriptyline (titrated up to 150 mg), and duloxetine (currently taking 60 mg daily). None were effective at noticeably reducing nerve pain. This is not to state that I do not believe these medications can be effective, as I know others have had great results from each of these. They just haven't worked for me.
I have also tried taking Vitamin D and B12 supplements for the past few months, which I have read can reduce nerve pain. Neither has helped significantly.
So, the question is, what would you recommend that I try next? I've considered, among other things, ALA supplements, Lyrica (although I have some serious side effect concerns), and topical lidocaine. I've also considered trying cold laser therapy, but my insurance doesn't cover it (no big shock there).
Neuropathic pain is no fun to deal with, but it seems that most sufferers eventually get around to finding something to successfully treat it. I just haven't found it for me. Yet.
Cheers, and have a wonderful weekend!
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Aaron98
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Hi, I suffer pain mostly through the winter and I've tried all the meds you mention! The only thing I now take is 5000iu of Vitamin D3 November to March and it works for me! Was it D3 you tried?
I've been taking 2000 IU of Vitamin D3 each morning since March. I also have a smoothie with about a cup of Vitamin D enriched milk, a banana, and cashew butter each morning. This is a significantly lower dosage than the dose you found to be effective. Do you take any other supplements in combination with the D3?
How does your neuropathic pain manifest itself differently depending on the time of year? How does it feel this time of year? Mine is fairly consistent. For years, it averaged about a 1-3 on a ten point pain scale, with maybe one day a week at a 5 or 6. For the past several months, it's ranged between 5-9, depending on the day. Some days it literally feels like walking on knives. Not thinking about it, and getting my mind on something else, works some of the time, but not on the really bad days.
I've actually thought about trying gabapentin again and increasing the dosage, Mr. Monkeybus. My current neurologist agreed that that was a low dose. I absolutely hate the feeling of being doped up. Relaxed is okay, but I know many people simply cannot function on gabapentin.
Lyrica? I've heard firsthand from some AMNers about anorgasmia, tremendous weight gain, trouble concentrating...I don't really know what to think.
First time, I took 200mg. It really spun me out. Didn't take again for months.
Then I had another go on it, took about 800mg, I was hallucinating.
It was on/off after that. Mostly on.
But since December last year I made a conscious decision to take however much I wanted to. The spasms were really getting to me. Legs, stomach, arms.
Just to stop the spasms, it was well worth it. Used to smoke a lot of weed as a youth, being stoned was nothing new.
It all passes though. Doesn't get me stoned anymore.
It does stimulate the appetite, but then the Modafinil kills my appetite. I haven't gained a kilo.
Even the anorgasmia passes. The SSRI's were worse in that regard.
It's all priorities with me. I cannot abide any more sleepless nights. Pure torture.
Looking at the "options" for neuropathy and/or fatigue, Gabapentin and Modafinil seem as benign as you can get. Better than those tri-cyclic antidepressants at any rate.
I take 600 mg gabapentin in the AM and 900mg at night. I can take an additional 600 mg in the afternoon as needed.
This is combined with 20 mg baclofen twice a day. Baclofen is great for spasms.
I have been using these two for 20 years. Modafinil is a great way to offset the drowsiness.
Exercise of the legs in any form possible works for me. I have a nustep recumbent elliptical. It allows a great balance of arms and legs to improve circulation. I also recommend motorized pedals. I use them whenever I am sitting around watching TV.
Finally, I use Motrin at times. Sometimes what I thought was neuropathy often was the inflammation that the muscles and tendons get from the tightness. Don't forget to keep things stretched out.
I also find Motrin can improve my sleep. Don't know why but it does.
Hi mariagno (et al) - It's been a couple months since my last post in regards to this. Since then, I've been testing gabapentin again and uptitrating the dosage at my neurologist's recommendation. I'm currently at 2400 mg a day, roughly divided into three doses. Working up to 2700 mg.
So far, I have not observed any difference in pain levels at all. I hate to keep harping on about how nothing helps my pain, but that is simply a fact. But then it seems that many medications have little or no effect on me.
How much Modafinil do you take, and how often? I've had a prescription for it since February, and I've probably tested 100 mg about ten days, and 200 mg a couple of days. I've never observed any noticeable difference to fatigue, energy levels, or mental focus. Apparently there are certain individuals who don't respond to this drug, and I may be one of them.
I'm going out to Kennedy Krieger next week, and I look forward to discussing medications and non-pharmacologic options for neuropathic pain management with the specialists there. While a couple of my many doctors in the Seattle area are vaguely familiar with ALD/AMN, none had ever encountered a patient with it before me. I'm excited to finally see some doctors who know this disease backwards and forwards. Cheers!
I am sorry the Gabapentin is not panning out. Like I said, I have taken it for 20 years with Baclofen and only have had to step up the dosage over that period.
Exercise involving the legs and specifically the ankles does wonders for me. Sitting for extended periods like on a plane or car trip can be agonizing despite the gabapentin. Motrin sometimes helps.
One more thing to check. If you are not mobile or very sedentary, fluid will collect in our legs especially late in the afternoon. The swelling will cause pain even if the swelling is not noticeable. You should start keeping track when the pain starts if not a 24/7 situation. Fluid retention can cause pain and the gabapentin will do nothing to fix that. It took a few years to figure that one out. Measure your lower legs and thighs when you first wake up in the morning and measure them again before you get into bed. Use a tape measure with metric markings, it will be easier and more specific. If it is fluid causing your pain they will talk compression socks or possibly a diuretic.
Swelling hurts. I wear light compression socks and take 10mg of Torsemide in the morning. It helps a lot for me to dump the fluid. The problem is I have urinary incontinence, so the first couple hours I need to be close to a bathroom. I have an adjustable bed and sleep with my feet elevated.
As for Modafinil, I have taken that for 15 years. I have taken both the quick release and the extended release forms. I prefer the quick release form.
I take 200mg daily. I had the option to take twice a day but it got in the way of bedtime. I now take it once at midday and that works.
With Modafinil, you have to take a break once in a while. What I do is take it for a few days and then take a day or two off.
I went to Kennedy Krieger in 1995 and met with Dr. Moser (who has passed) and Dr. Raymond. I think Dr. Raymond has left.
What you have to remember with AMN/ALD are no two patients are exactly alike or sometimes vaguely similar. As you have already figured out medications and supplements have different outcomes for people. Symptoms and outcomes also are very different. So, while I was very happy with my visit to Baltimore, receiving any specifics for me did not happen. Perhaps 20 years later things have changed. Please let us know about your visit. I may go back if you are positive of the experience.
Dr. Moser told me this in 1995 after I asked about my outcome.
He said, "I have seen young men die and I have seen old men still dancing." He told me to take it in short strides concentrating on the here and now and not on future what ifs.
I spent 5 years looking for a cure, then I accepted the disease and focused on the quality of life issues. I have been far happier dealing with the here and now while letting the future take care of itself.
After you get home, I would not look for people who know much about our disease. I live in Dallas and there is no one here either. DFW is the 5th biggest area in the US.
Since AMN/ALD has no cure today, I latched on to a doctor who sees mostly patients with MS. MS outcomes are very similar with neuropathy and mobility issues. CRT scans show similar issues. A good neurologist with a good MS practice will be the best path. Then find one willing to listen and look things up. My neurologist only has the rule of doing no harm. If I read something that may help or I would like to try, he will look it up. If it can't hurt me, we will try it. I found modafinil on an MS website 15 years ago when I was still able to walk. I read that it was helping people with MS to walk better and get rid of the heavy drowsy feeling. I asked him and he said what the heck. It has helped me since then That is the kind of neurologist you must have.
He found that 4-aminopyridine was helping his MS patients. I took it while I was walking and it was great. He also discovered the Bioness leg units for toe drop when they were still experimental and got me into that program.
So, don't worry about an AMN knowledgeable doctor. Find one that knows the symptoms and their treatments.
One more piece of advice, all doctors that are not neurologists have never heard of AMN. They don't know it or understand it. It is very important to let them know and not let them blame all ailments on the disease. That will force them to miss things. Make sure you have a good general practitioner who can work with everyone to make sure no mistakes are made or nothing is overlooked.
For example, my GP found I had a heart valve leaking filling my lungs with fluid. She sent me to the Heart Hospital in Plano. They immediately recognized I needed surgery. The initial plan was open heart surgery. The problem is being in a wheelchair, I use my arms for transfer, motion, go to the bathroom, and just about everything. That meant I would be bedridden for 12 weeks and require 24/7 assistance for everything. Twelve weeks in bed could also cause ill effects like blood clots.
My GP knew this was a bad course. She checked and found a surgeon who could do robotic heart surgery. Two days later I was home and moving around like I never had the surgery.
I tell all my doctors my disease mimics MS and to follow any treatment to a similar MS patient. They are similar but the reason for the nerve damage is different.
The best course of treatment is an educated patient who is willing to ask questions and aggressively seek an answer. Doctors can't possibly know every disease, every treatment, and how it will work with every patient.
mariagno Thank you so much for you! I am in complete agreement with you about finding the appropriate medical help. I am in NYC and here there isn't anyone specializing in ALD/AMN, although my brother and I were diagnosed by a peripheral neuropathist here. For treatment, I travel to Dr. Eichler in Boston or Kennedy Krieger. Right now, I am still ambulatory but I really don't know for how much longer. Everyday seems to be more and more difficult. My physical therapist treats MS patients but he has been a great help to me. I want to travel as much as I can for now, but as you mentioned, being idle wrecks my body. I am planning a trip to Tokyo and I am a bit apprehensive!
Tokyo will be fun. Since I was diagnosed I have done two trips to Europe, the Indianapolis 500, and photo safari in South Africa. I was still walking with arm crutches.
Since being in a wheelchair, I have been to Jamaica and a dozen car trips. We are headed to Mexico for Christmas. My biggest worry has been the wheelchair getting lost or the hotel lying about handicap accommodations.
I prefer the car trips because I feel more in control of the pace. Flying is quickly losing the thrill because it is just a hassle for all these days.
I am getting very lazy and we are building a lake house to go to on the weekends.
A year ago, this post was. We all (hopefully) survived another year.
I am nearly out of Gabapentin and I am mildly panicking. This is a sure sign of addiction/dependence. My legs have been all peace and quiet for years now and no way am I giving up. Though, I really should cut down a bit.
How about you, Aaron98 ? How goes it? Any joy with your pain relief?
I keep meaning to cobble together a definitive list of any and all effective medications for our disease. Like mariagno says, MS doctors are generally way more knowledgeable as regards treating our symptoms. Diet, lifestyle, supplements, DRUGS, plenty of research, anecdotal evidence, et al. So much has come out of the MS community, and the medicines I take for AMN (Modafinil, 4-AP, Gabapentin), they are off-label prescriptions for AMN. Off-label. Throw in buying medicines online and 4-AP-3-MeOH as well.
it is all well and good to accept that we are all different with a multiplicity of symptoms, but that doesn't square well with the medicines that are on general prescription for our beloved disease.
Baclofen and Clonazepam. Is this the best medical science can do? Rhetorical question, obviously.
Factor in those of us who have to rely on GP's who really haven't a clue, and we are where we are.
Lately I have been doing some self experimenting with my meds and I have found some new direction. I now take my hydrocortisone/lyrica/ and have added Tramadol. I have gotten rid of Baclofen completely.Not sure how or why but Tramadol handles the pain and gives me more energy than the Modafinil did . Thus making life much better at this point. I also use my leg compression machine quite a bit. I know all body’s are different, but I am just giving you my current path. Be well !
Sorry for not responding sooner, monkeybus. The past few days have been quite busy.
I've essentially given up on medications for my neuropathic pain. From anti-depressants to anti-convulsants to opioids, I was unable to find anything to help. Thing is, my pain is actually getting worse. It used to be that the neuropathy was localized to my feet and lower legs, but in the past two months, it has advanced to my knees and lower thighs. Progression of the disease, maybe? Who knows? If it eventually reaches my groin area, I have no idea how I'm going to be able to handle that.
I've tried ALA, as well, but have noticed no benefit. I will likely try a CBD tincture or oil in the near future. I know many swear by supplements or cannabis of some form.
I had the trial for a spinal cord stimulator three weeks ago, and I am scheduled for surgery to get the permanent one on July 23rd. It did help with pain in my legs, but did nothing for the pain in my feet (the doctors told me that feet are quite difficult to target). I figure that some pain relief is better than nothing at all. I had the pleasure of meeting up with another member of this forum for lunch last week in Seattle. He got his spinal cord stimulator earlier this year, and it was great to hear his thoughts on it. It's clear that these devices aren't a perfect solution, but again, something is better than nothing. As an aside, it really was such an encouragement to meet another man with AMN, and to be able to compare notes on our ongoing journeys with this disease.
Other than that, I just found out yesterday that I likely have POTS as a third official disorder to add to the list. I've suspected this for a while now, but I'm finally having testing done to confirm this. I know it's fairly common for some with Addison's to develop POTS. Is anyone else dealing with this?
LessThanRich, I've tried it in a couple forms at my doctor's recommendation (vaping, edibles, oils). It did absolutely nothing for my pain, or spasms, for that matter. It's hard to believe that some people find it to be effective for major seizure disorders, because again, it's done nothing for me.
It is just like any other medication: everyone reacts differently and has different results. I have been vaping at bed time recently to deal with insomnia and the neuropathy. It helps with sleep and somewhat with the neuropathy but I can't say that I like the feeling and that is why it is for only when I am trying to sleep. One thing to keep in mind is that there are many different strains and it is necessary to try to find what works for you.
I heard this from other people. I would just continue "underground shopping" as usual, but live with no fear you can get busted I live in France where it is still mega illegal, but our local police just don't care (unless you are a dealer and making money off it).
Indeed LessThanRich , I was recently in Montpellier. Marijuana everywhere, and the police really didn't care. These kids were smoking it right in front of them one time. The gendarmes never managed to walk the 10 metres to have a word with them.
@monkeybus France are apparently the biggest cannabis consumers in Europe despite very rigid laws against it. Go to Amsterdam and like 30% of people you pass in the street will be French. The police understand they "have lost" the battle and people will consume regardless. They now spend their time chasing real criminals
Yes, I read that Macron is planning to change the laws on account of they cannot arrest everyone. I still wouldn't want to get caught by the French police, though. I watched the remake of Papillion the other day.
There's no sign of any change. Pharmaceutical lobbyists will fight this hard. France is also the number 1 consumer of prescribed meds in Europe too, legalisation would devastate their industry.
Personally I choose to live in deep countryside where true literal anarchy reigns, you can do as you please here and noone will stop you. We have 3 police officers for like 6 villages and they are all super nice guys, the kind of local police you want! I am not worried about growing or storing weed at my house at all.
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I live in France where it is still mega illegal, but our local police just don't care (unless you are a dealer and making money off it).
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