Has anyone else been prescribed lyrica or similar for pudendal neauralgia and been told they can never have it for more than 3 months and must continually come off it to see if it has "healed"
My pain specialist tells me this is standard procedure.
Ive had pudendal neuralgia for 5 years. I was misdiagonised etc etc like so many seem to have been and I finally i found something that worked ( Lyrica.) Not 100%, but enough to feel i have a better percentage of my life back.
I dont know if the premise for this by this pain specialist is :
1) Im not really suffering( its all in my head )
or
2) A genuine standard test to see if the pudendal neurlagia trigger for the pain is " deactivated" -the hurt nerve has healed in some way
Id appreciate your answers, even if jujst yes they have or no they havent...the thought of weaing off after three months and then going inot a nother pain cycle and having to go back on ( lyrica in my case tyook 3 weeks to begin working --is causing me extreme anxiety., but if people have been told to do this and they have been cured , well Id really appreciate knowing
so many thanks
limiting Medication to 3 month cycles ? weaning off?
Re: limiting Medication to 3 month cycles ? weaning off?
Basically, yes. When this all started for me, I was told that once the pain was controlled, it was a good idea to come off the pain relief - or start to reduce the dosage, at least - every so often, just to check that the pain was still there underneath.
Unfortunately after 2 years, it has not been so easy to find a pain med that does the job, I have yet to have a pain-free day, so I haven't actually had to do this yet.
I am not surprised by what your specialist says, though. On the plus side - surely it is a good idea to know whether or not the pain is still there underneath? - otherwise you won't know if it has healed/improved. And it won't be difficult taking the dose down a bit, surely you won't have to come off it completely, just enough to tell?
Unfortunately after 2 years, it has not been so easy to find a pain med that does the job, I have yet to have a pain-free day, so I haven't actually had to do this yet.
I am not surprised by what your specialist says, though. On the plus side - surely it is a good idea to know whether or not the pain is still there underneath? - otherwise you won't know if it has healed/improved. And it won't be difficult taking the dose down a bit, surely you won't have to come off it completely, just enough to tell?
-
helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: limiting Medication to 3 month cycles ? weaning off?
Maybe that's all you need to say, that you still have some pain. I know that others who are taking lyrica will say what their regime has been.mikei777 wrote: i found something that worked ( Lyrica.) Not 100%, but enough to feel i have a better percentage of my life back
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: limiting Medication to 3 month cycles ? weaning off?
Mike,
It is my undertanding that Lyrica clears out of your system as soon as you quit taking it. So in theory if you could separate the Lyrica withdrawal symptoms from the pudendal neuralgia symptoms, you could figure out if you still had PN 12-24 hours after you stopped the Lyrica. I can feel the dimunition of my PN pain as soon as I take the Lyrica. I can feel it come back if I miss a dose. I am of the opinion that PN can only be managed with drugs and not cured similar to diabetes or any other chronic condition. Withdrawal from Lyrica, Neurontin, or opiates is debilitaing and exhausting. Going through this every 3 months is like throwing yourself off a cliff every 3 months to see if you can fly. What have you done to make the nerve heal ? Have you sat less ? Avoided sexual activity or whatever triggers (like withdrawal) that increase your pain ? If you have found a way to manage your condition without unaccceptable side effects, then good for you. You wouldn't stop blood pressure medication every 3 months to see if your blood pressure was better. No matter what medication I take to cut into the PN pain, I never have to wonder if it is still there. I always know.
Best Wishes,
Don
It is my undertanding that Lyrica clears out of your system as soon as you quit taking it. So in theory if you could separate the Lyrica withdrawal symptoms from the pudendal neuralgia symptoms, you could figure out if you still had PN 12-24 hours after you stopped the Lyrica. I can feel the dimunition of my PN pain as soon as I take the Lyrica. I can feel it come back if I miss a dose. I am of the opinion that PN can only be managed with drugs and not cured similar to diabetes or any other chronic condition. Withdrawal from Lyrica, Neurontin, or opiates is debilitaing and exhausting. Going through this every 3 months is like throwing yourself off a cliff every 3 months to see if you can fly. What have you done to make the nerve heal ? Have you sat less ? Avoided sexual activity or whatever triggers (like withdrawal) that increase your pain ? If you have found a way to manage your condition without unaccceptable side effects, then good for you. You wouldn't stop blood pressure medication every 3 months to see if your blood pressure was better. No matter what medication I take to cut into the PN pain, I never have to wonder if it is still there. I always know.
Best Wishes,
Don
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
Re: limiting Medication to 3 month cycles ? weaning off?
You make a very good point comparing with blood pressure meds, Don.
If we'd had three months completely pain-free, then reducing the meds would be sensible, just enough to check that it was still there underneath, and then taking the dose back up again to restore pain relief.
But at the moment, even one day completely pain-free has yet to happen - here at least.
If we'd had three months completely pain-free, then reducing the meds would be sensible, just enough to check that it was still there underneath, and then taking the dose back up again to restore pain relief.
But at the moment, even one day completely pain-free has yet to happen - here at least.
Re: limiting Medication to 3 month cycles ? weaning off?
I guess I could understand your PM's philosophy if you were just recently presenting symptoms. But a chronic 5 years??? I don't understand how he thinks the lyrica can heal/cure you within 90 days.mikei777 wrote:Ive had pudendal neuralgia for 5 years.
I agree, Don. This just seems crazy to me!donstore wrote: Going through this every 3 months is like throwing yourself off a cliff every 3 months to see if you can fly.
Maybe I'm misunderstanding the powers of Lyrica, but I didn't think it was a "cure" medication. Not even for Fibro folks.I hope you're able to discuss your concerns with your PM doc, Mike. Have you been seeing a PN specialist?
Best regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Re: limiting Medication to 3 month cycles ? weaning off?
thanks for all your words Calluna , helen don and karyn ..they really are appreciated .. Im new her so do aprpeciate very much
. Ive been around living with pudendal problems enough to have written simliar to your thoughts myself but when a specialist plants seeds of doubt it is scary and kinda undermining as this pain makes one vulnerable. and depndant so much on medical profession.
.....yes so i guess Its much appreciated warmly to see others are prepared to speak out about this kind of thing going on where yes in my case I felt it is bit hard to take --anyway ill see where the best solution lies ..
In south africa we dont have too many options but im still luckier than some others ..
you actually have PN specialists in USA?
Im not sure whether to reapproach this pain specialist doctor but it isnt too healthy the sever time contraints etc..so ill see
today lyrica was pretty much useless it hasnt raised the bar much more than 40% in 3 weeks ive had it so far but lets see,,
________________________________________________________________________________________________
TO PUT IN PERSPECTIVE HERE IS A LITTLE ABOUT ME
(kinda qrote this if anythigin also for own purposes to reevaluate my options .,..was helpful
ive actually had it much long er more around 12 years but 5 of the years were much worse than the others. ie ive had years of partial remission
the other 7 years during the 12 it has incapacitated me from driving a car except short distances maybe 15 mins /. ..so i should really should count them but they pale in insignificance to the other 5 years .......when i was effected by pain coming on during the day and by lunch working becoming hell but unavoidable
So maybe my case is a little unusual because Ive had partial remisisons in this sense for several years.
Age now 56. Live in south africa . Started 12 years back .Sitting for many days or 12 hours at a time in IT starting own business for 2-3 years 5 years approx in pain sitting. Always in pain over 12 years in a car.recently pain in sitting and standing.Stretching is a bad idea also. Walking seems to help Always have done regularly 30 mins a day .
initially non bacterial prostatis diagnosis by urologist - refused pain control told to live with it ( with big smile and pat on back- ) .
My General practitioner of 6 years told me it was " psycological reaction to stress fantasy of non existent pain " until ended up in emergnecy then told me it was pudendal neuralgia as the emergency for tramadol injection where that doctor diagnosed but it was still in my head (pudendal neuralgia heals in approx 3 weeks i was told ) .
Read some of "headache in the pelvis " book prompted me to find a PT specialist who did internal examination and found no evidence of pelvic muscles in spasm. She was only person to give me a diagnosis of pudendal neuralgia
Managed to go to a pain specialists in 2011 despite fear of medical profession due to excruciating flare ups in all areas that pudendal nerve affects
.Enquiry to pain specialist ( he is also an aenethetist )re nerve blocks as the he woudnt know where to block an stabbing around was dangerous - he asked me ..where would i block the nerve ? how would I know where, the pudendal nerve being large etc...?
Maybe there isnt proper euipment this country to do guided methods. and diagnose thatw ay i dont know
Started lyrica 7 beg july 2011 offers help some days and very little others. Sometimes 100mg tramadol needed for breakthrough pain . Told i will have to come off medication end september to see if lyrica has stopped the pain permanently. have no choice to got to medical profession to beg for drugs but would rather avoid them wherever possible.
Still wondering why so many doctors refuse to acknowledge nerves can be permanently hurt and do not heal in approx three weeks. Dismayed chronic pain sufferers ( except terminal or cancer patients etc ) seem to never get a consultation in the country i live of more than 10-15 minutes before being shown the door.
.When i can amongst busy schedule of running own business find meditation definately helps delay onset of pain during day, Have hopes for lyrica but hard to tel so early worried about coming off it as pain specialist seems to think can do cold turkey but lyrica sufferers claim its a addictive and can be devastating to come off
In that last year and half my partial remission of year was pretty much brought about by only lying down or standing ...workjng when standing lying on couch when relaxing
But then i got this crazy idea i needed o lose weight and walking wasnt enough and cycled for 3 weeks .The saddle was high and i kept saying oh well your supposed to get used to it ...well i brought on the pain again for last 6 months through this and could kick myself .........
Curious that I had a short 2 week partial remission about 2 months ago ( where sitting pain and standing dissipated totally but not sitting in car pain , when i did three weeks of "earthing " ) in my case 30 min barefoot on grass walking daily .....Thermographs are fascinating on back nerve pain studies forom earthing . (download here )
http://www.earthinginstitute.net/studie ... s_2004.pdf
I am hopeful about lyrica or finding some drug when i can find a doctor who is willing to be educated a bit as recently some days working have been wonderfull on lyrica but currently a lot of dismay about the idea of weaning off after 3 months by current pain speciliast when its hardly helping anyway ( i told him this but he was busy and dint have time or even seem interested to listen on phone )
ill find another general practioner rather but this time -probably a qualified doctor who is more opened minded like those that also practice homeopathy /naturopathy etc and have a genuine and deep interest and curiousity in their profession ).
I dont have the money or the courage to go for surgery due to our exchange rate in S Africa and for lkong time this put me off joining this forum ....but read with interest about it..at least though i sense now drugs are beginning to help....and I have to wonder how many people have this condition(or any chronic pain condition ) in the world who doent even have the computer access that I have ....
Its good to find a community a broad as this seem to be ..and ironically feel i can talk more freely to to strangers here simply because we are known tp each other by sharing so much in our lives which is the same....this pain
. Ive been around living with pudendal problems enough to have written simliar to your thoughts myself but when a specialist plants seeds of doubt it is scary and kinda undermining as this pain makes one vulnerable. and depndant so much on medical profession.
.....yes so i guess Its much appreciated warmly to see others are prepared to speak out about this kind of thing going on where yes in my case I felt it is bit hard to take --anyway ill see where the best solution lies ..
In south africa we dont have too many options but im still luckier than some others ..
you actually have PN specialists in USA?
Im not sure whether to reapproach this pain specialist doctor but it isnt too healthy the sever time contraints etc..so ill see
today lyrica was pretty much useless it hasnt raised the bar much more than 40% in 3 weeks ive had it so far but lets see,,
________________________________________________________________________________________________
TO PUT IN PERSPECTIVE HERE IS A LITTLE ABOUT ME
(kinda qrote this if anythigin also for own purposes to reevaluate my options .,..was helpful
ive actually had it much long er more around 12 years but 5 of the years were much worse than the others. ie ive had years of partial remission
the other 7 years during the 12 it has incapacitated me from driving a car except short distances maybe 15 mins /. ..so i should really should count them but they pale in insignificance to the other 5 years .......when i was effected by pain coming on during the day and by lunch working becoming hell but unavoidable
So maybe my case is a little unusual because Ive had partial remisisons in this sense for several years.
Age now 56. Live in south africa . Started 12 years back .Sitting for many days or 12 hours at a time in IT starting own business for 2-3 years 5 years approx in pain sitting. Always in pain over 12 years in a car.recently pain in sitting and standing.Stretching is a bad idea also. Walking seems to help Always have done regularly 30 mins a day .
initially non bacterial prostatis diagnosis by urologist - refused pain control told to live with it ( with big smile and pat on back- ) .
My General practitioner of 6 years told me it was " psycological reaction to stress fantasy of non existent pain " until ended up in emergnecy then told me it was pudendal neuralgia as the emergency for tramadol injection where that doctor diagnosed but it was still in my head (pudendal neuralgia heals in approx 3 weeks i was told ) .
Read some of "headache in the pelvis " book prompted me to find a PT specialist who did internal examination and found no evidence of pelvic muscles in spasm. She was only person to give me a diagnosis of pudendal neuralgia
Managed to go to a pain specialists in 2011 despite fear of medical profession due to excruciating flare ups in all areas that pudendal nerve affects
.Enquiry to pain specialist ( he is also an aenethetist )re nerve blocks as the he woudnt know where to block an stabbing around was dangerous - he asked me ..where would i block the nerve ? how would I know where, the pudendal nerve being large etc...?
Maybe there isnt proper euipment this country to do guided methods. and diagnose thatw ay i dont know
Started lyrica 7 beg july 2011 offers help some days and very little others. Sometimes 100mg tramadol needed for breakthrough pain . Told i will have to come off medication end september to see if lyrica has stopped the pain permanently. have no choice to got to medical profession to beg for drugs but would rather avoid them wherever possible.
Still wondering why so many doctors refuse to acknowledge nerves can be permanently hurt and do not heal in approx three weeks. Dismayed chronic pain sufferers ( except terminal or cancer patients etc ) seem to never get a consultation in the country i live of more than 10-15 minutes before being shown the door.
.When i can amongst busy schedule of running own business find meditation definately helps delay onset of pain during day, Have hopes for lyrica but hard to tel so early worried about coming off it as pain specialist seems to think can do cold turkey but lyrica sufferers claim its a addictive and can be devastating to come off
In that last year and half my partial remission of year was pretty much brought about by only lying down or standing ...workjng when standing lying on couch when relaxing
But then i got this crazy idea i needed o lose weight and walking wasnt enough and cycled for 3 weeks .The saddle was high and i kept saying oh well your supposed to get used to it ...well i brought on the pain again for last 6 months through this and could kick myself .........
Curious that I had a short 2 week partial remission about 2 months ago ( where sitting pain and standing dissipated totally but not sitting in car pain , when i did three weeks of "earthing " ) in my case 30 min barefoot on grass walking daily .....Thermographs are fascinating on back nerve pain studies forom earthing . (download here )
http://www.earthinginstitute.net/studie ... s_2004.pdf
I am hopeful about lyrica or finding some drug when i can find a doctor who is willing to be educated a bit as recently some days working have been wonderfull on lyrica but currently a lot of dismay about the idea of weaning off after 3 months by current pain speciliast when its hardly helping anyway ( i told him this but he was busy and dint have time or even seem interested to listen on phone )
ill find another general practioner rather but this time -probably a qualified doctor who is more opened minded like those that also practice homeopathy /naturopathy etc and have a genuine and deep interest and curiousity in their profession ).
I dont have the money or the courage to go for surgery due to our exchange rate in S Africa and for lkong time this put me off joining this forum ....but read with interest about it..at least though i sense now drugs are beginning to help....and I have to wonder how many people have this condition(or any chronic pain condition ) in the world who doent even have the computer access that I have ....
Its good to find a community a broad as this seem to be ..and ironically feel i can talk more freely to to strangers here simply because we are known tp each other by sharing so much in our lives which is the same....this pain
Re: limiting Medication to 3 month cycles ? weaning off?
Hello Mike,
I'm sorry for all you have been through and just wanted to let you know you are among friends here even though there is a bit of distance between us. You're not the only one who has tried to exercise and brush off the pain only to make it worse -- I can relate to what you are saying.
Have you checked with specialists at university hospitals in your country? Keep your courage up and keep fighting.
Violet
I'm sorry for all you have been through and just wanted to let you know you are among friends here even though there is a bit of distance between us. You're not the only one who has tried to exercise and brush off the pain only to make it worse -- I can relate to what you are saying.
Have you checked with specialists at university hospitals in your country? Keep your courage up and keep fighting.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: limiting Medication to 3 month cycles ? weaning off?
Mike,
Keep in mind that Lyrica (not a generic drug) costs more so often providers or even doctors want to avoid it or stop it due to the cost. If you are not getting signifigant relief, you can increase the dose and see if it works for you without unacceptable side effects. I am currently on 150 mg 3X per day. If you are completely pain free for weeks and can sit all you want...... that would be the time to SLOWLY decrease the dosage and see what happens. Unfortunately, PN of long standing like you and almost all of use here on the forum has doesn't go away without some sort of major intervention. As Violet says, you need to find a doctor who is on your side so you can get the drugs you need to manage the pain. You have to be really assertive with this problem because the vast majority of doctors have no idea how to fix it and are likely to blow you off. Also, get a cushion (IC Network, Airgo Active Cushion - Amazon) and use it when you have to sit.
Best Wishes,
Don
Keep in mind that Lyrica (not a generic drug) costs more so often providers or even doctors want to avoid it or stop it due to the cost. If you are not getting signifigant relief, you can increase the dose and see if it works for you without unacceptable side effects. I am currently on 150 mg 3X per day. If you are completely pain free for weeks and can sit all you want...... that would be the time to SLOWLY decrease the dosage and see what happens. Unfortunately, PN of long standing like you and almost all of use here on the forum has doesn't go away without some sort of major intervention. As Violet says, you need to find a doctor who is on your side so you can get the drugs you need to manage the pain. You have to be really assertive with this problem because the vast majority of doctors have no idea how to fix it and are likely to blow you off. Also, get a cushion (IC Network, Airgo Active Cushion - Amazon) and use it when you have to sit.
Best Wishes,
Don
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
Re: limiting Medication to 3 month cycles ? weaning off?
I know this post is old, but why did you discontinue earthing?
Your post:
Curious that I had a short 2 week partial remission about 2 months ago ( where sitting pain and standing dissipated totally but not sitting in car pain , when i did three weeks of "earthing " ) in my case 30 min barefoot on grass walking daily .....Thermographs are fascinating on back nerve pain studies forom earthing . (download here )
http://www.earthinginstitute.net/studie ... s_2004.pdf
My husband has PN, and I am going to give it a try to reduce pain.
Your post:
Curious that I had a short 2 week partial remission about 2 months ago ( where sitting pain and standing dissipated totally but not sitting in car pain , when i did three weeks of "earthing " ) in my case 30 min barefoot on grass walking daily .....Thermographs are fascinating on back nerve pain studies forom earthing . (download here )
http://www.earthinginstitute.net/studie ... s_2004.pdf
My husband has PN, and I am going to give it a try to reduce pain.