Gabapentin withdrawls while preparing for neurology tests

I was originally diagnosed in July locally (I live in a suburb of Minneapolis, MN). But because my condition was so "rare" my neurologist here didn't really know what to do to treat it. Within days I was on the Mayo Clinic wesbite and requested an appointment to be seen in Rochester, since it's only 80 minutes from home. I received a call 3 days later from a patient intake representative who then sent me a long questionnaire that I had to fill out online. I had to be as detailed as possible and submit it within 48 hours. They said I would receive a letter or email within 7 days to let me know if an appointment would be granted. 7 days later, I received an email saying that I was on a waiting list for an appointment. A few days after that, August 8th to be exact, I recevied a phone call saying "We have an appointment available on November 6 at 7:30am" and that was the soonest they could get me in. It has been an agonizing 12 weeks with another week to go. But so grateful for the appointment and all of the tests they have set up for me while I am there for a few days.

I'm sorry to hear of your experience - that sounds very frustrating. I will say that Mayo Clinic is very thorough and detailed with their information and I have felt very well informed through this whole process. I suggest you submit a request for an appointment because you just never know! They do say you need to plan to be in Rochester for 5-7 days as they may schedule more appointments depending on the findings from various tests. I hope you can find some answers and relief!

I wonder the same thing! I am going to talk to my doctor about this. I still have pain but it's manageable most of the time. If I am walking or standing too much then I am in a lot of pain (so needless to say I don't do much of that, but I wish I could!) But I wonder if my pain is mostly manageable BECAUSE of gabapentin or if I am just doing better than I was 5 months ago. It's hard to know if going 48+ hours without it will have an effect that quickly or not, but I will find out next week!

Thanks.

Please post your experience after the 48 hour withdrawal.

We have faxed my medical records over 15 times. Finally I went and picked up the last years and faxed them myself. Amazing they finally got them. I am faxing the rest tomorrow. I found out a lot of false information in my medical records. Medications they say they are prescribing that they are not prescribing. When I had my small fiber biopsy for the second time I was tested for Parkinson’s antigens and refused a DAT scan. My insurance will not cover the DAT scan since I am negative on the antigens. Why would I want to pay for a test that is inconclusive? It just seems like so much drama.

So how did your tests come out? And what did the doctor say about gabapentin and maybe baclofen? I take that combination for painful leg spasms, and it works for me, but I'm still interested in your doctor's input.
Best wishes to you.

I ended up at Mayo for 3 days as they added more tests. They left no stone unturned! I had 2 MRIs, a quantitative sensory test, and autonomic reflex screen, a fat aspirate procedure, and EMG, a lumbar puncture and 17 vials of blood taken! The original diagnosis of lumbosacral plexopathy was correct, but I also have thoracic radiculopathy and they couldn't rule out peripheral neuropathy. After testing me for dozens of things that could have caused this, I tested negative for all of it. So they don't know the cause. Treatment is normally steroid infusions, which I had been receiving. But because of my hisroty of ulcers I developed after the first 5 day course of steroids, and the bone infarcts that they found on one of my MRIs, they don't recommend I continue steroids. Which is too bad because they really were helping. They are going to send me information IVIG infusions as an alternative option. They also gave me the option to do a nerve biopsy to see if that showed the underlying cause, but I'm not sure I like the side effects of that. The other option is just plain ol' PT (which I would do with all of the other options as well). So I'll look into IVIG and see if insurance will cover it. And continue with PT.

I will keep taking gabapentin and they said I could increase the dose, which I am going to do to get more relief. I immediately noticed the effects of not having gabapentin in my system when I went off of it before my tests. I've read you should taper off but I thought 2.5 days without it might be okay. I was wrong!!! I was in so much pain the whole time I was there, and was so stiff and numb that I had to be wheeled around everywhere. I couldn't sleep because the pain was so bad. Once I could take it again, I felt relief within a few hours. So I guess I am one of those people where gabapentin DOES work for me. They said any other medications should be discussed with my local neurologist, and I can't get in to him until December. So I don't know anything about Baclofen or any other options yet.

I guess in the end I am glad to have an answer, and very glad I don't have any underlying conditions that they could determine from the blood tests, spinal tap, etc. They said lumbosacral plexopathy is monophasic, so it usually only happens to someone once. However, it will take several months (it's already been 4.5 months) or possibly years to get back to some sort of normal. However, they said how long it will take and the degree to which I will recover is unknown as it varies so much from person to person. So I guess I am back to trying to be patient and just live day by day. And try to find other things within my control to help myself feel better, such as diet and exercise. However, since I basically have no quad muscles at the moment, most exercise is painful and difficult and somewhat dangerous because of my balance issues. So that is frustrating. I'm trying to be patient with myself and remind myself I can only control certain things so to take control of what I can.

I am stunned by the number of people here that gabapentin seems to provide relief. I have tried it three or four different times and am certain that it makes my PN much worse, so I have given up on that. TENS is the only way I have found to quell the hellish pain and sensations created by PN. I don't see a lot on these boards about TENS, could it be because it isn't a drug?

Gabapentin takes the edge off my PN pain. I try not to take it daily as I don’t want to get dependent. It definitely makes me less sharp cognitively. And it seems like I’m developing a tolerance after a few months. So it’s a mixed bag for me !

“Provided relief”… not for me. That meds help me without seizures… forget pain helping… I’ve used that meds for 10+ years. That pain kills me on my legs and my balance hi==kills me to. My TBI accident - of riding ny bicycle in 2012 - changed my life… good or bad? All of us gets z different life as times go… and yes my balance, thoughts, seizers, understanding and over most everything inside me. So those meds, 3 times a day helps me from no-seizers. Yes, the pain and working of my pain and doing my pain is there. So I do enough more inside me tries to do better as an old man.. daily ❤️

I can’t take gabapentin or lyrica. I am allergic to both of them. They have a sulfa component in the inert ingredients or capsules. It triggers my asthma where I can’t breathe. My face and mouth swell up. Now when I take anything sulfa related I quit breathing and go into anaphylactic shock. Not fun. Bacoflen makes me feel like I have a severe case of the flu. I use soma 350 mgs or skelexan 800 mgs based on what kind of muscle spasm it is. If it’s in my back skelexan if it’s anywhere else Soma.