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Avatar universal

I Feel Special and Update

Just a quick update. Last week they did the nerve block on the left ilio inguinal nerve.
It took away the pain for about two days. Since then the pain has been harder to trigger, it is more than likely l still end up freezing the nerves. The cortisone shot they performed on my wrist is really burning this time (last time it just went numb.) So it may be working this time. They also gave me a compound cream to try on my hip, which I hurt sleeping on the floor of all things, a small amount to the pain away for several days. I'm looking forward to trying it out on my wrist, after the cortisone does its thing. Progress at long last:) Hooray!

In other news I am a medical Christopher Columbus!

Over the weekend the side effect I'm experiencing from the pristiq got worse to the point where the entrapped right inguinal nerve no longer broadcast pain. The triggers, intensification, lingering and decline still match the pattern of the pain, however the signal had become completely inverted.

Monday I had to take a midterm test. Sitting in a hard chair for any length of time is a trigger. Sure enough after a few minutes the left entrapped inguinal nerve began to broadcast intense pain from the waist into the left testicle. The right side began to broadcast the same signal only it registered as a feeling of intense pleasure.

By now I have become somewhat accustomed to this, so I just focused on the test. However, a minute later the feeling of pleasure spread from the inguinal nerve and began to run the entire length of the penis. While disconcerting nothing else happened so I finished the test. Upon finishing the test I stood up in order to walk over to the professor's desk, and hand her the test. As soon as I did, I realized I had a new problem. Rather than remain an odd sensation isolated in the nerve, this odd side effect now influenced mechanical function in the area, which had also become hypersensitive. Walking rapidly caused the feeling to intensify to the point I had to sit down for a few minutes, and then limp to the car to avoid having an accident.

Since the earliest appointment with the pain management doctor who prescribed pristiq is still two weeks away, I decided to talk to the pharmacist who filled the prescription. The doctor would probably suggest doing this anyway.

She said the hot flashes I'm experiencing are more likely caused by the pristiq than any problem with the neck surgery I had a few months ago. She said that while pristiq can cause hypersensitivity in other areas, she has never heard of a side effect like the one I was experiencing. She said that pain and pleasure function similarly so it might be possible. Finally she suggested perhaps I should switch to effexor, and that I should contact Pfizer.

I called the Pfizer line for medical concerns and reporting side effects. At first I talked to a nurse, the first time I described what was going on she was too busy messing around with her computer to pay attention. So I had to explain it again. At this point I don't think she believed me because her voice took on the tone of someone that was having a hard time keeping a straight face. She had me describe everything one more time, asked questions, and said that she could file a report. She said she had never heard of anything like this but that she could contact a company pharmacist and transfer my call.

I explained to the pharmacist again all the symptoms I had been experiencing. She said the only official use for pristiq was treating depression, which she is glad it helped me with. She said while Pristiq can be used to treat nerve pain it is an off label use, especially true in the treatment of entrapment pain. So therefore though all evidence suggests the pain and pleasure switch is a side effect of the pristiq, it would not be one that came up during testing, and according to company records I was the first one to report this particular syndrome.

So yay for me! I have officially discovered a new side effect! I feel so special... I'm usually the last to find out about something.

I did manage to talk with the doctor who did the nerve block during the follow up call he made. He suggested that since I have tried many medicines, and that since so far pristiq is the only one that has not caused me severe side effects such as: high blood pressure, rapid heartbeat, manic paranoia, difficulty breathing, or falling asleep while driving, I should probably stick with it.

He said after all even if I did switch medicines, the feeling of pleasure would just revert back to a feeling of crippling pain, and he would recommend freezing the nerve anyway. He seems to think that if we freeze the nerve it'll stop the pain and the other side effect. Since the pristiq is helping with depression and some with the wrist pain I think that's the plan of action I'm going to take.
11 Responses
Avatar universal
Thanks for updating us!  I have to admit that at first I was a little hesitant about the side effects you experienced, but I do feel you are legitimately having that side effect.  The pain/pleasure connection does make sense.  
I'm glad the injection helped you, if even a little bit!  I would make sure with the doctor who will do the nerve freeze that having the nerves frozen will not compromise your sensories in that area in a negative way.  I think with the nerve freezing or burning, the nerves are supposed to grow back normally, meaning without the severe irritation and pain.  It would just be awful for you, though, if you had the nerves frozen and lost all sensation in a vital area.
Avatar universal
well Burning the nerve causes horrible damage according to the doctor I saw.  However freezing the nerves seems to have less chances of causing damage.  He believes it is because the sructure of the nerve is left in tact but the cell dies on the inside allowing it to grow back within the still standing infrastructure.  

I don't Know.  At this point I'm ready to kill the nerves and let god sort it out.  I could adapt to numbness more than the intense pain of the last year and the insanity of the last few weeks.  Being able to carry weight, go up and down stairs, drive without worrying about being distracted by intense sensations battling for attention everytime I hit a bump or pothole in the road... One of these times I'm worried it's going to cause an accident and I don't need anymore of those.  Geico will put a bounty on my head!

Plus if the nerve does grow back there is no guarantee it will have the same problems.

If I can get my hands sorted out by the time they grow back I can at the very least be of the Pristiq as I will no longer need it for the nerve pain and depression it causes. That way it will be solely putting up with pain until we can kill it again.  My doctor said some of the patients never needed to go back others he said needed zippers to make going back in so often easier :) If they made people zippers they would be rich.

Anyway I don't know.  At least I know I'm not insane so that's good. and then right hand today is far less irritable than it has been. I'm going to see if we can do a nerve block on it after the cortizone kicks out. Maybe calming the nerve might of been all we needed to do.

If this Dr can help me out he will be my new favorite person in the whole world.  I'm also seeing a rhuematiodologist to see if there may be an underlying inflammtory condition making me more susceptible to inflammation and pain.
Avatar universal
I guess the last thing I'll add to this thread before updating it with the final result of the nerve freeze is, that I do appreciate your honesty.

Honestly there are things I do not like to talk about, and this is one of those things. It is embarrassing to talk about either online, let alone on the phone, and you can bet I sure did not walk into that pharmacy Monday.

The only reason I posted here in great detail exactly what happened, when it happened, and in which parts of the body is because I have looked and looked and looked online and nowhere is anything remotely similar to what I have experienced documented. Hopefully if some other poor guy out there is going to the same thing they will find this thread. That way they can at least know what I went through, what caused it, and what eventual solution I chose.

It is a very embarrassing problem. Unfortunately by virtue of its weirdness, and by virtue of being male, most people tend to be skeptical thinking it to be some sort of weird, perverted, sexual thing.  I mean honestly only three people I told believed me. The pharmacist on the phone, the pharmacist at CVS who saw that I was having difficulty walking and standing, and my brother-in-law.

My mother, a friend of mine who thought I was in severe pain and despite my best efforts made me tell her what was going on, my cousin and my own mother didn't really believe me.  They thought I was joking, crazy, faking, possibly "sick" and anything but honest.

So hopefully this will help someone else going through the same thing.

And I do thank people here for the encouraging not give up and to keep looking for answers, otherwise I might not have found one.
Avatar universal
should say even online and did not want to walk intothat pharmacy, Voice software is on the fritz
Avatar universal
I applaud you for sharing your story even though it's embarrassing.  I definetly understand that.  I also appreciate how candid you are about it.  It's a problem that I'm sure other men have experienced and not felt comfortable talking about.  Things like that definetly need to be brought to light.  Women talk about all kinds of things about ourselves in regard to pregnancy and our children so I am pretty used to speaking anatomically with others but everyone has to be careful these days with the internet.
My FIL has a similar problem but I don't really know the details as it's not the kind of thing I want to know about my FIL.  However, I do know it has to do with a nerve running to one of the testicles and it extremely painful.  I don't know much about it beyond that but he is in PM because of it and I believe it has to do with a nerve running from his spine.  I think he uses one of those "donuts" that you sit on when he has to drive or sit.  I don't know if that would help you any, but thought I would suggest it.  He was shot in a shot-gun accident when he was younger so has pain issues from that as well.
I also wanted to mention that not many people have been on the forum lately.  A lot of the members have things going on outside of the forum but will be back when they can get back.  I suppose it's the nature of a forum made up of people with severe pain issues.  
I hope the nerve freeze helps a lot.  It's good that it's not as severe as nerve burning.  There are a lot of nerves in that area of both the male and female body and they are particularly sensitive, I believe.   I can't imagine the pain that it must cause and if I were in the same situation I would have it done as well.  It's just the kind of thing I would say to be prepared for as it may take time to get full-function and sensation back after the procedure.
Not being able to use your hands for much of anything is one I can understand to an extent, my left hand is weaker and occasionally just drops things or starts hurting.  Mine is due to the nerve that runs from my cervical spine, though.  I will be eager to know how that freezing goes for you as the doctors have offered freezing, burning, and ablation to me.  I haven't tried any of them because the injections were so painful and didn't help me much but a different procedure could be a world of difference.
I don't think you said if you had a time frame for getting the procedures done?  Also, are you planning on having more nerve blocks before the freezing?
Avatar universal
Hi -thanks for sharing -i have nerve damage to my left leg and groin area -ummm, i have to use a needle to get an erection -but yay this can last up to 6hrs (quite painfull by then lol) My dr has just changed my happy pills to pristiq.... so i wonder... i also wonder if my gabbapentin is part responsible, though i know from nerve conduction tests it is not totaly responsible..
anyway ta for posting
T.
Avatar universal
Forums tend to have times where they are either so busy it's hard to keep up, or times where it is just incredibly slow. It's just their nature no matter the topic. However like I said everybody here has been pretty encouraging.

As far as timeframe goes as soon as possible as suppose. I am tired of the intense pain. I'm also tired of the unpredictability of this side effect. Especially since this morning what I have been worrying about happened.  I went to bed last night and both sides were in intense pain, I thought maybe the side effect had passed. I wake up this morning and both sides are still in intense pain. I stand and walk to the breakfast table, that just makes things worse. Then the right side kicks over, side effects back, I tried to standstill to calm the nerves down. The sensation kept building however, on both sides, until finally culminating in an accident that I am glad occurred while I was at home. The pain in the left side never did come down all day, and the rights has been touchy.

It's just not a way to live. So seeing how the nerve blocks have been incredibly temporary in nature, I think I will forgo any future blocks and skip straight to the up freezing of the nerve.
They said they could go back in and undo and then redo the hernia surgeries, moving the nerve over, there is no guarantee doing so would prevent the same problem from recurring. I think I will pass on that.

Knowing the way it takes time to get referred consulted and then the procedure finally done, I'm thinking in the middle of November.

Plus I'm trying to maximize the very little bit of savings I have left. So whether my body likes it or not I'm going to try and get as much as I can done before my deductible runs out. I'm still going to have the surgeon who did the neck surgery do an MRI. The disc below the one he fused was very close to pressing on my spine. He said he would not fix it until it did, and I really want to make sure nothing got moved around during the surgery. I'm thinking everything will probably be fine but if not I would probably do that in December.

I'm going to make the pain management Dr. try a nerve block on the wrist. It may last longer, or it may, nerve down and make it harder to trigger. The only other option is for the hand surgeon to do exploratory surgery cutting the arm from "stem to stern."

Throw in unemployment ends in October, bye income, and the disability lawyer I spoke to today said he doesn't know why the previous lawyer I consulted said to wait to unemployment ended to file. I really should have filed last year in they might have gotten around to looking at it by now. So now I'm sort of stuck. I need income but if I work I don't qualify for disability.

So I do have a rough plan however, everything is sort of seat-of-the-pants and Prayer at the moment. I think I'm going to go out of town for two days, not think about it at all, and go crazy when I get back.
Avatar universal
(PS to previous comment: I have been trying to share some information with other people asking questions, when and if I have any idea what to say to help. It is a nice placehere.)

Pristiq has helped some with the nerve pain. It is help more with the depression, although in that regard it is not quite bulletproof i.e. I still have had periods of feeling down after taking it however, I bounce back quicker.

The side effects with pristiq have been better than my experience with other medicines. It hasn't caused difficulty breathing, rapid heartbeat, high blood pressure, or manic paranoia, or extreme tiredness. The only listed side effects have been occasional hot flashes, and a touch of insomnia. However in general I do feel much better since I've been taking it in terms of attitude.

If you do have a similar side effect to the one I was describing, it would be interesting to know how it affects you. It could be that since everything usually works fine with me it has led to the hypersensitivity. Since everything does not work fine for you it might be more normal, or it might not happen at all. If it does I will warn you it is very random. If it does also call Pfizer. Corroboration :)

Avatar universal
took 1st pristiq yesterday @45mg x 1 -got some slight flushes and a bit wobbely, felt likr the ground wobbled for a few seconds... think it was a bit of a shock to the system but will regulate after a few days...

will let u know if i have any groin area ummm... experiences... (and pfizer)

cheers T.
Avatar universal
If it gives you trouble sleeping my doctor recommends taking it before you go to bed. The capsule is time released so by taking it late the majority of the meds won't hit your system until it's time to get up. I'm trying it now.
Avatar universal
I'm glad you have a good plan for getting the procedures done but I'm sure it's all stressful with the finances getting tighter.  I think most of us here know how that goes.  It's a bad time economically to have health problems!
Please let us know how the procedures go for you.  I am considering have a nerve burn/freeze or ablation but it will probably be around January before I can even consider it.  I hope that disc in your neck hasn't gotten worse.  That's the big downside to a fusion.
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