I have a long history as you can see from my posts and have tried so many specialists in different parts of the world, diff treatments, nerve blocks, drugs, ketamine infusions etc
I am still battling chronic pain but I have had the strangest experience. I used to even get a headache before I started getting pelvic pain but then after years of pelvic and chronic pain I developed chronic daily migraines on top of everything else.
I was put on Topomax on a low dose to start for my migraines which has helped quite a bit but the unexpected thing is it has completely nailed my rectal spasms which were extreme. I would roll around the floor in agony. The nerve pain would project down my legs into my pelvis. I would have to take fast relief morphine. I would often have bowel in continence during an attack and these attacks were almost daily.
So to not have these attacks for months and to not to have to take fast relief morphien after being on it for years it is unbelievable. The only thing is Topomax is not a nice drug, it makes me very tired and wiped out on even the low dose I am on. I take mine only at night as I go to sleep to try to keep the side effects at a minimum. The worst was the memory loss for the first month, I thought I had early dementia but I hung in there because of the benefits and it has been worth it.There is always a pay off with pain it seems
This may not work for everyone and is a wild card but it worked for me, definitely worth trying. It really has been a miracle for me. If only I had tried it earlier because now I am stuck with this awful chronic pain. I have been trying ketamine infusions where I stay in hospital for a week but have not had much success so far
Good luck everyone
Written by
Emmax
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Wow, that's unexpected but amazing! I'm so happy for you. I also have rectal spasms almost daily that are equally as painful. I am definitely going to bring this up to my doctor! Thanks!
wow! thanks for sharing. I have been experiencing these sharp pains. I now realize that they are spasms. That's it. They have gotten more frequent than before, and also very sudden.
Hi Emmax nice to see you on here we spoke previously
That's great n pleased to share there has too be a connection with the mind n spasm as the brain is sending signal too spasm so hearing this is great, I'm also thinking about going back on ora morph morphine but its the tiredness its nice to know that this is more soothing drug but still being sleepy sucks
Glad to know your having some relief I wonder it would help pelvic I have seizures n wonder if theres a connection to your migraine as I don't think there epileptic. I don't suffer migraine anymore but wonder ifs worth a try n maybe stop them?
But good luck and hang in there with treatment it may take time with your hospital stays I hate them but youy may get benifit I hate chronic conditions
I'm going to read up on your med n the ketemine sounds positive
Hi Emma
I just wondered if you'd tried Pregablin prior to Topamax?
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