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Posts (16)

Sat, Mar 21 9:07am · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

I can sit down and whether or not I have pain depends on what kind of day pain wise I am having. Mostly I can sit down anytime. I will tell you that sitting is an irritant and sitting for long periods of time really ramps up the pain for me. Also depends on what kind of seat you are sitting on. Long term sitting in a hard chair is terrible. Sitting around my house in comfortable a chair is no problem. I hardly notice the pain. I can always sit. I have just learned which type of seats to avoid if possible.

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.