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Posts (15)

Sun, Jan 5 11:24pm · Smelling Cigarette Smoke in Brain & Nervous System

To @lesion I was very surprised to see that someone else has the voice changes. I have that problem as well. Mine tends to come and go and I haven’t found anything that fixes it. I have had success with the smell issue with the drug clorazepate. Although I was never given a firm diagnosis and my story is too long to type, I also think I had some sort of stroke about four years ago. The voice issue is so annoying. I’m sorry you have to deal with that.

Sat, Jan 4 7:19pm · Smelling Cigarette Smoke in Brain & Nervous System

You are taking a pretty small dose of gabapentin. I am not a doctor but in 2016 I had a case of phantom smell so bad I couldn’t eat or drink. I went from healthy to bedridden sick on and off for seven months. I lost over thirty pounds. I went to Mayo Clinic in Florida (don’t go there) five times and to Cleveland Clinic. I lost my job of 27 years because I was so sick. It came and went for seven months. My point to you is throughout this ordeal I was taking gabapentin for another issue for fifteen years and a way bigger dose. I don’t know if the gabapentin can cause that but my guess is it isn’t that. What ended up helping me with the smell problem was an anxiety drug called clorazepate. I was prescribed it for anxiety because I was a busy 58 year old commercial office space manager, designer and general contractor and what happened to me including the smell issue stopped me dead in my tracks. No one was ever able to tell me why or what but it was in the brain not my smell.

Sat, Jan 4 7:09pm · Smelling Cigarette Smoke in Brain & Nervous System

I agree that I don’t think it is the gabapentin causing the phantom smells. I had a VERY SEVERE case of the smell issue on and off for seven months. I also had numerous other symptoms and was very sick. It came and went over twenty times. At the time this happened in May 2016 I had been taking Gabapentin for fifteen years without a problem. I’m certainly no doctor but I think it isn’t the Gabapentin.

Sat, Jan 4 8:49am · Gabapentin a controlled substance in Virginia. What do I do? in Neuropathy

I live in Kentucky where it also became a controlled substance and have had no problem getting it (been taking it for 15 years). I don’t know what kind of doctor you see but a university pain management clinic or respected pain management doctor should give it to you without a problem. Nothing changed about my ability to get it when it transferred to a controlled substance. If your doctor won’t give it to you they are practicing poor medicine and uninformed. Sad. I’m sorry you have such a hassle.

Dec 26, 2019 · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

I read your post and it made me cry for you. I tried everything I could possibly try including an extensive surgery. My pain was so bad I considered suicide just to end my pain. Finally, after years of narcotics, invasive physical therapy, failed spinal cord stimulator surgery, lots of other drugs, and lots of doctors, I got a Medtronic Implanted Drug Infusion Pump. This pump does NOT provide systemic medication which is the advantage. I had gotten up to a dose of oxycontin that was so big I couldn’t increase it anymore and function. I was also taking percocet for breakthrough pain and gabapentin. The pump is surgically implanted in the side of the abdomen and tubing tunneled to the spinal cord where it is attached to the spine. The pump holds 10 mg of morphine and 10 mg of marcaine and that amount lasts about 70 days depending on your settings. It delivers a tiny amount of medication into the spine per day where it blocks pain signals going to the brain. The BIG positive is it does not distribute systemically thus eliminating the side effects of narcotics. The pump lasts about six years before it needs to be replaced and the only maintenance is a quick visit to have it refilled every couple of months. There is no exposed part or control that you have to deal with although getting used to having the pump in your stomach takes some getting used to. Adjustments are made by the doctors office. I am now on my second one so I think I have now had it for about ten years. I cannot tell you the difference it has made in my life. I will say it does not completely eliminate the pain and my pain is in a very personal area but it helps so much that I can function and have some normal life. Sometimes I barely notice my pain and sometimes it flares up but nothing like it was. I can tell you that stress will flare it up so it is important to try to keep your stress down. It is manufactured by Medtronic and you can check it out on their website. If you decide to consider it find a reputable pain management doctor. Preferably at a large university medical center pain management department. I go to the University of Kentucky Interventional Pain Management Clinic.

Dec 20, 2019 · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

I meant to say it hasn’t completely eliminated my pain.

Dec 20, 2019 · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

I had bilateral pudendal nerve entrapment surgery done by Dr. Stanley Antolak well over ten years ago. He wasn’t practicing at Mayo. He has his own practice in Lake Elmo, Minnesota I think. I went there three times from Kentucky once per month for three months in a row and had three test injections prior to surgery. The injections were great for a few hours (I think they were. lidocaine and steroids). I had to go there for a week for the surgery and be in the hospital for a couple of days. I was so hopeful that this was going to be the answer for me. My pain also was in the rectal, vaginal, buttocks and down the back of one leg. I was taking massive doses of oxycontin and it wasn’t doing much except making me stupid and dependent. The surgery had a six week recovery time also. I worked as a commercial office space designer, general construction contractor and commercial property manager so being off work that long was a big problem. The surgery did absolutely nothing to help my pain. I went through all of that, spent a ton of money and got nothing for it but disappointment. I do think Dr. Antolak might be retired. He was pretty old when I saw him and I think it was about 2005 maybe. His clinic was only for pudendal pain and I was so excited that I found someone that could “fix” my years of suffering only to be disappointed again. I eventually ended up with an implanted drug infusion system made by Medtronic. It is implanted in your abdomen area on one side and a tube is tunneled to the spinal cord and attached there. In order to qualify for the surgery I had to get off all narcotics and stay off for six weeks. All of that was pure hell but I did it. The pump contains 20 mg (half morphine and half marcaine). The medicine is not systemic. It sits a small amount in your spine where it blocks the pain signals going to your brain. I don’t have to do anything as far as controlling it. I get it refilled about every 70 days. The pump last about 6 years and then needs replacing. I am on my second one. It has completely eliminated my pain but it has made a HUGE difference. It took me from wanting to jump off a bridge to having a life. I have found that stress is a big trigger even with the pump. When my stress is low my pain is almost nonexistent with the pump. For anyone out there that has tried many things (and I had) it is worth considering. Just be sure and find a very qualified doctor who can do the surgery and manage the refills (which are done with a simple needle stick). I go to the University of Kentucky Interventional Pain Clinic.

Nov 25, 2019 · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

I have had PNE for 18 years. Your description about the two by four applies to me only in another private location. I have tried everything known to man i.e. Narcotics; Pelvic Floor Physical Therapy; a very invasive surgery on both sides (incisions are on each butt cheek) which I travelled from Kentucky to Minnesota (not Mayo but a PNE Clinic I think in Irmo Minnesota operated by Dr. Stanley Antolak who specializes in PNE but may be retired by now); a spinal cord stimulator implant which also failed and was later surgically removed; external lidocaine ointment; you name it and I have probably tried it. Here is how I got relief. At least enough relief to be able to function and a significant reduction in my pain. I have an implanted medication infusion system. It is made by Medtronic if you want to read about it. In order to get the surgery I had to wean off of all narcotic pain meds and be off for six weeks. The pump is placed in the left side of the abdomen and a tube is run to your spinal cord. It delivers a tiny amount of morphine and marcaine (all completely implanted and controlled by your doctor). The difference between this and narcotic pills is the amount is so tiny that you don’t get the systemic effects of narcotics. It continuously pumps a small amount of the drugs into your spinal cord where it blocks the pain signals going to your brain. They last about six years (battery life) and depending on your dose need to be refilled about every 75-90 days (refills are a simple procedure with a needle). I also take Gabapentin to supplement that. If it weren’t for that my pain was so bad I had considered suicide many times. I have also found that stress is a big factor. I am on my second pump (had one about ten years) and without it I don’t think I could have survived the pain and it’s delicate location. I completely understand your living in private pain. I still have pain so I don’t want to imply this is a complete fix because it isn’t but it made a big enough difference to allow me to live a mostly normal life. There are days when I have very little pain (almost none) and there are days I have pain that is worse. I discovered the relationship to stress just due to time and experience. I ended up getting a divorce after 13 years recently because the stress of staying in a volatile marriage was having a huge effect on my pain levels (another example of the stress factor). If you decide to investigate go to a large university pain management department or a reputable pain management facility. My insurance covered the surgery and the ongoing refills. The pump saved my life. If you have any questions just ask.