I think I have found a medicine that may help with a part of this disease! When you find one that has only one side effect you do a happy dance in your head. Heck, I can take the totally falling asleep when taking this drug. The part about finding this medicine that upsets me is no neurologist, nor pain management doctor, even suggested it. My GYN is my hero!
Let me explain. One of my symptoms of Tarlov Cyst Disease is PGAD. I simply refer to one part of PGAD as “little bee stings in unmentionable places”. If you have read some of my blog you have come across me talking about them. They start out as a startling sting, but if I can’t get on my hips, ASAP, they will become lots of stings. The area will grow from one warning sting to a whole hive of bees.
As I was telling my GYN, I just want a hysterectomy to try to control those nerves from causing any more issues. She starts talking to me. I found out that no such surgery will erase those active nerves. I discovered ‘those’ nerves are not attached to the uterus, nope, no such luck. She said she has even burned those nerves for others and that will only give temporary relief. She asked if any other doctor has suggested anything; my answer was that no one would discuss it with me. She responded that there is an old drug that does help and she has prescribed it for such. This drug is an old fashion antidepressant. She tells me to expect dry mouth and to make sure I keep a watch on my teeth. She goes on to tell me that I could gain 15 to 30 pounds, if I am not careful, and that might be the reason no one has discussed it with me.
As we talked about it, she cared enough to ask about my diet and then said I was doing right to do the clean eating, but be careful to stick to it. Then I told her I can’t take meds daily due to laziness and it scares me to be putting such chemicals in my system. I told her I understood that antidepressants are supposed to be taken daily, and she shook her head. She said remember you are not taking them for depression, but for how the med will affect the nerves. So I walked out with another prescription.
You are thinking two things: How did it work, and what the heck is the name?
How did it work? Can I say it gives you the best 4 hours of sleep you can ever have? Yep, within 30 minutes to an hour I am comatose. The other effect it has, that I don’t like, is that it hangs around for 12 hours or so. I am a zombie during those 12 hours. But, did it help with the bee stings? Yes! I have the lowest dose available and I really need to find a way to cut it in half. But that is one tiny pill. The one time I tried cutting one in half, I had to chase it across the kitchen. I have a pill splitter but it won’t stay in place in the groove, too tiny. With a knife, it just wiggled out-of-the-way.
If I can find a way to cut them, I want to try to use them with/for the neuropathy down the legs. I don’t think I will ever get rid of the burning funny-tailbone. But the way I look at it is — one symptom down in a whole list of them makes an improvement in quality of life. It is those small things that work together to make life bearable or unbearable.
OK, enough with the teasing, you still want to know the name! Remember I am not a doctor! I am only telling you what my experience is/was. I am not even suggesting you try it out. I hope all the legal junk is covered. The name is Amitriptyline. Warnings are — no sun bathing or tanning beds, and it will make you sleep with extreme dry mouth.
If any of my readers have tried it, please comment so I can get a feeling/idea if this luck will last.