Violet M wrote:It's really hard to predict without trying drugs because people respond to them differently. Initially I was put on imipramine which is a tricyclic realted to amitriptyline. It helped the bladder/PGAD symptoms but I couldn't tolerate the side effects so I tried an SSRI (lexapro) instead. It also helped the PGAD and I had very few side effects with it. Later I tried cymbalta, an SNRI to see if it would help the pain but I felt like it increased the PGAD symptoms and didn't help with any symptoms so I went back to lexapro. One important thing is to go off any of these medications slowly because going off too quickly can cause issues. I took a whole year to go off of lexapro by eliminating 1/8 pill per week.
Some people find lyrica helpful. The main problem I've heard people report from this med is weight gain. Gabapentin is a related drug that some people find helpful. Some people report it makes them "loopy". Really it's almost impossible to find a drug that doesn't have some side effects. I've never heard of lyrica, gabapentin or tricyclic antidepressants making PGAD worse or causing PGAD.
Violet
Thanks for all the info,very helpful. I havs heard a lot of people say amitriptyline is a bad drug with bad side effects,but never heard anyone say what side effects are?
As with many drugs it seems that just about every symptom in the book is listed as a possible side effect. The serious side effects tend to be rare. It might be helpful to start on a very low dose and don't go any higher on the dosage than is needed to provide adequate relief. In other words, if you feel the drug is giving you good relief and you can still be functional, then don't keep going up higher on the dose. When I first started on an SSRI to see if it would relieve PGAD symptoms I was doing OK so the doctor thought I should up the dose but then I started having too many side effects and couldn't tolerate it. So my own personal rule of thumb is to take the smallest dose that gives enough relief to make life tolerable and still be able to function.
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.
Has anyone ever tried Magnesium for PGAD? I've been using it for a few years and it helps a lot. Sometimes I also have a bath in Epsom salts (magnesium) and it seems to help settle it. My pharmacist told me that it's used for restless legs which is quite similar. I also will up my opioid use a little bit and that helps too.
I didn't realize that my PGAD was related to PN until last year. I had contacted a group in the UK who have started researching PGAD and they tried to get me to be the Canadian spokesperson but honestly I don't think I could. They did however give me some great info on ways to cope:
Lidocaine
Ice packs
SSRIs
I use them all but I know them magnesium is the key.
Morton's (the salt company) makes an Epsom salt lotion with magnesium.
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13. Pain reduced significantly beginning around 11/23.
You can put the lotion anywhere and the magnesium will be absorbed through your skin.
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13. Pain reduced significantly beginning around 11/23.
Hi all,
I'm new here, but have been suffering from this condition for about 8 months now.
I am male and also had a spinal cord injury (L1) 11 years ago which means I am a paraplegic.
I have always had neuropthy (pins and needles) in my legs, but for this to have come more than 10 years after my injury seems very strange.
It is a struggle to live with everyday (you all know I'm sure), but I was wondering, are there people out there who are undertaking research in this? It would be good to see exactly what research is being done.
I find meditation helps in calming the nerves and also to strengthen my willpower (which I find is put in good use in getting through the day).
I also find that since getting the pgad symptoms, I get anxious just when meeting people- anyone else get this?
It's really a strange thing to suddenly happen, it really is a test for the mind.
All the best everyone
cheers
sg300
Sorry to hear you are battling this symptom. There are some docs interested in treating the condition but I don't know about any research being done at this point. The woman who was pioneering the research passed away. Jeannie Allen with the PSAS support group might have more info on research that's being done. Last I was on their forum their focus was heavily on SSRI's being one of the causes of PGAD which didn't apply to me since I had never taken them.
The pudendal nerve typically comes off of S2,S3, and S4 but there can be variations in anatomy. So I don't know if your symptoms are related to your injury from 11 years ago. Had you had an MRI that shows any recent spinal changes?
When I had PGAD I was anxious meeting people or not meeting people -- it's the kind of thing that can make you anxious all the time.
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.
Thanks very much for your reply.
I will contact Jeannie Allen to see if she knows of any research being done. I would have thought there were many areas to look into. I live in the Uk, but it seems most doctors are oblivious to the condition.
My spinal injury consultant doctor is pretty adamant that any neuropathic symptoms must be from the spinal cord injury and not anywhere else. I don't know how she can conclusively say this, especially when I see that it is predominant in able bodied people and I haven't come across a case on the internet where someone who is paraplegic such as myself is suffering from the symptoms of PGAD.
I did have an MRI - I have a cyst on my level on injury at L1, but this has not changed since my injury 11 years ago. I am now due for nerve conduction tests on my pelvis. Since I am paraplegic I am always sitting, so don't have the luxury of standing up and relieving the symptoms. I do find that lying down with pressure on my sacrum aggravates it though, and I have muscle wastage on my bottom- I was wondering if this means more pressure on the nerves down there (which could have started it?)
Anyway, could be a number of things, but I believe it's always worth staying positive, there's always light at the end of the tunnel.
Thanks again
sg
