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I am feeling a little hopeless, I have tried several pain medications and nothing is really helping take my pain away. Any suggustions?

I have been on the Fentanyl Patch for a few years.  Before that I tried alot of differnent opiates and combinations.  And either they made me sick.  Or the side effects where bad.  Then my dr. gave me Fentanyl,  which worked great.  I have been on it for years along with topamax.  I'm on 75mcg.  Sometimes i go up to 100--but i get too sleepy.
I had a dr. implant me with a nearve stimulator by medtronic, but it did not help with my pain.  So, my dr. took it out.
I really would like to know if maybe implanting a pain pump would my best bet.  I have chronic IC with hunners ulcers and was diagnosed in 2003.  And I have been in constant pain ever since then.  And my dr. said my bladder will never get better. It will most likely get worse.  I feel like I am at end of my rope, I can't take living like this anymore-in constant pain!  And I don't want to sleep my life away either.  I am 42, with 4 boys....ages 15, 18,19, & 22.  Anybody have some experience with the pain pump?
Thanks for any insight you can share with me,
amy
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Avatar universal
I have a nerve stim and love it.   I have no regrets!!  It is important that you are comfortable with your Doctor and KNOW that he knows what he is doing.  My Doctor has been placing these things since they first came out.  But because of the type of leads I was having placed in I needed to see a neurologist I got lucky.  I am so sorry it did not work for you.  

Maryann :o(
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Avatar universal
Thank you so very much for your in put!  Audrea, Yes, You make a very good point, about making sure they do a trial implant first. I had another Pain Med. Dr. who had surgically implanted a Neurostimulator  into my spine, they first did the surgery where they call it a "trial", because they don't surgically put the battery pack and controller in.  The Dr. implanted the neurostimulator in my spine with all the leads and kept it in there for a week.  The wires, battery pack, and controller were all left out of my body and I would put them in a kind of purse or fanny pack.  Anyway, the neurostimulartor did not help  with my pain at all.  It was very very painful.  As a matter of fact the Dr. who placed the leads, I believe, placed them on some very sensitive nerve-areas-where they should not have been placed-& I told the Dr. and he would not listen to me....needless to say, the trial period was a very painful time.  I couldn't wait for the week to be over!!!
Thanks OtisDaMan for The ideas about changeing up the meds. I was on neuroton then got switch to lyrica now I am takeing Topamax 100 mg 2xa day  and I am on cymbalta 60 mg 2 x  day.  Yes, they do really help to aid your pain medicine and help your pain medicne work even better!!!
That is what my Dr. has told me.  And I can tell it helps!  Thank you so much for your input and your support!  
Sincerely,
Amyray:)
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Avatar universal
Perhaps it is worth considering augmenting Fentanyl with an entirely different kind of medication, such as anticonvulsants and/or antidepressants. Some specific ACs and ADs also affect the central nervous system's pain signalling network - if you are one of the lucky ones (I am) it can make a big difference. Furthermore, at least some of the ACs should be additive with fentanyl.

In particular the ACs gabapentin (neurotin) and pregabelin (lyrica) suppress pain by modulation of the pain inhibition subsystem; although GBP and PGB are GABA-mimetic, they seem to modulate predominately through docking with voltage-dependent calcium channels, changing the calcium Ca++ charge within the neurons.

As far as ADs go, the tricyclics such as amitriptyline, nortriptyline and a few others, seem to also modulate the pain inhibition system, although by a different mechanism to the ACs (as far as I am aware the ADs alter the efficacy of the sodium channels in the neurons of the pain inhibition subsystem, although research on this is still incomplete). Typically the doses used are at subtherapeutic levels for depression, but are therapeutic for pain.

A pain management doctor might prescribe small doses of both an AC and an AD in order to get an additive pain effect while avoiding much of the side effect profile of the drugs if used individually at higher doses.

Just some thoughts. I know exactly what it is like to lose control of pain through a change in medication (in my case I needed treatment for work stress-related severe depression, and the SNRI AC I received blocks liver metabolism of some opioids, including the one I was using for pre-existing chronic pain...), so you have my sympathy.

All the best,

OtisDaMan
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Avatar universal
Before you get the pain pump the doctor should do a trial first. By doing this you will know if it will effectively control your pain. You should make sure the trial is one in which you go home with it for a few days at least so you know it will help while you are mobile. I had a trial where they did one in an inpatient style where I was in bed for 24 hours in the hospital so naturally it helped so I really don't know how great it is. I found out later they can do a longer trial where you go home with it and see if it works. I have heard many success stories and also the opposite. I know this does not help you. I have been told by those with them many still have to take oral pain meds with it for breakthrough pain or pain that is not covered by the inplant. The whole reason you want the implant is so you don't have to take oral meds, at least it was for me. I have decided to wait because it would be the absolute last option and I am still quite young at only 34. I know how discouraging it is when your meds no longer help as much as they did in the beginning. My previous PM doctor had me taking 300mg morphine 2x a day and 30mg roxicodone for breathrough 4 x a day and even then my pain was not controlled. I am no longer on such a high dose thank God. My PM now that I started seeing 2 1/2 years ago brought me down and could not believe I was on such a high dose at my age. He has informed me there is a point where you have to say this is the highest amount you can take due to the tolerance effect because as you go higher the side effects just keep getting worse. I had to take Provigil just to combat the sleepiness so I could function at such a high dose.
So ask your doctor if they can do a trial, I think they have to anyway, and make sure they let you go home with it after they know it will be safe. I do know it dropped my blood pressure and they had to give me steroids to make it come back up with extra IV fluids it went down so bad. They would not even let me out of bed to use the bathroom. You should of seen the nurse. It really scared her. They did not expect it to effect my bp like that since I was so tolerant, but you never know what can happen.
Best wishes and I hope you find the answers you are looking for.     Audrea
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