Hi Ben,
Got to agree with Calluna, try the lyrica. . . I think is has been the most useful drug for most people here with nerve pain and any side effects are usually a lot less that with gabapentin. If there are any side effects hopefully they will wear off but you will need to give it some time to see if it works for you.
It didn't for me unfortunately. It really did help my nerve pain quite a lot, maybe too much in that I HAVE to sleep in a peculiar way to 'bridge/support' my pelvis and when on lyrica I was sleeping any old how and waking up with major back and pelvic muscle pain. In a back to front way it shows that it does work.
I am amazed and happy that embarrassing bodies found Dr B for you, although I have heard that another PN sufferer was 'diagnosed' by a cable channel presenter. Wow! the power of the media EH? I applied for Embarrassing bodies a while ago but didn't get on either as they had already started shooting.
Good luck, take care.
Helen
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.
hi calluna - yeah both gps at my surgery are really good wich is great because my last doctor really wasnt , i did think that about the pain from the infection being totally differant the nociceptive and neuropathic i studied this ages ago so i should of known better - im starting the drug tho . ive been on the tramadol before about 2yrs back i was taking it everyday for ages really missed it when i stopped taking but was replacement with the amitriptyline , just hate taking tablets thats how i got a gastric ulcer ( was taking ibuprofens aswell ) but always had sensitive stomach since i was kid .
ah right i understand now , so isit supposed to improve over time - and is your pain constant or does it come and go or worsend by doing things like sitting ect. ?
hi helen - i was amazed too i actually didnt think that they would get back to me or be able to help me out but i suppose i got the better deal by not going on the show and still getting to see the specialist - they said my case was more involved and that they contacted many specialists and dr b was the one so im lucky - they are stationed in birmingham i had to go there for shooting and stuff nice people too , the muscle pain you say of in the back and pelvis is what really what i dont want but if i get that then i have to do something about , just wondering where did you have a mrn done ?
It was done in London. Think they are called UCI diagnostics (were Medtel) It was a 1T scanner so not the best by any means but I didn't know anything else existed back then. The radiologist there Dr Blease was taking some interest in PN and they were supposed to be getting a 3T scanner this year but I'm not sure of any progress with that.
Dr Filler is supposed to have his MRN imaging available at his Harley ST clinics now (Nervemed) but he is more focussed on piriformis problems rather that pudendal it seems.
Personally, unless you are really struggling with a diagnosis (correct one that is) I wouldn't bother with a scan. I believe that Dr B doesn't hold too much store with any findings and at £700 +++ for Dr Fillers it wouldn't be money well spent.
Shame it take SOO long to get to see these people but at least you are on the list.
Take care
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.
I saw my doc and he recommended I stay on Lyrica at my current dose, as it's helping with the pain. I still do get quite sleepy and I'm still a bit confused but that aspect seems to be easing a bit. I have noticed Lyrica affects my digestive processes. Bloating/gas/constipation are frequent.
I went to court on Friday to read my Victim Impact Statement in court. It was a very stressful situation but I'm glad I changed my mind and decided to read it myself. Shaking like a leaf and with voice cracking, I delivered 4 pages of effects the break-in has had on me. I'm so proud of myself for not breaking down and crying, and when leaving the podium to return to my seat, again I stared down my intruder and gave him the most contemptuous look I could..
The court clerk looked at me and mouthed the words 'That was good'. After sentencing, the defense lawyer came to me and told me he'd never encountered a more powerful Victim Impact Statement in his years of practice, and thanked me for being brave enough to put a human face to the crime. To say I was astonished is mild.. The prosecutor has been in my court from the beginning and she spoke to the judge about how this crime has affected my life and how it will never be the same. She said she was moved by my statement and was happy I've been attending counselling to learn how to move forward.
The intruder got 8 months in jail at a facility that also does drug rehab, and 2 years probation where he must attend counselling, his regularly-scheduled appointments with his probation officer, and must also stay 500 metres away from me, my family, my home and place of work.
While still somewhat depressed, and wanting to wait to see if my mood improves with my next counselling session and turning the page on the horror story that was my life this past several weeks, I appreciate your suggestions for anti-depressants and will talk with my doctor to see what he suggests, since quite a few of them can exacerbate the effects of PGAD.
Thanks kindly for your words of support concerning the break-in too.. It was a horrible experience and I'm eager for it to become just a memory for me..
On the road of discovery to see what is causing my PGAD.
DES, good for you on your victim statement. You are one brave lady!
I didn't quite understand your comment about anti-depressants exacerbating PGAD. I had never used an anti-depressant before PGAD so I could not attribute my symptoms to prior anti-D meds. After I developed PGAD from PNE I started taking Lexapro which is an SSRI antidepressant and it cut down on the symptoms by about 75%.
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.
Lyrica does absolutely nothing for me. Not the slightest bit and at any dosage. Same for Neurontin.
2002 PN pain started following a fall on a wet marble floor
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
Hi Ben
Oh bless ya I know how hard it is to get people to believe you are suffering. If you are still able to work, put yr make up( in my case) if you look ok! You must be ok! As a hairdresser I'm talking to people all day. Some are touchingly sympathetic, others , I think must just consider me an amusing hypochondriac .
I did a trail on lyrica unfortunately I didn't find it as affective as amitriptalene. You will find the right one for you! Don't worry to much about the side affects two much from either of these drugs get the first couple of weeks over and they gradually decrease.
Anne smith
Iliostomys at twenty five, just after delivery of baby
Started with rectal pain about twenty one years later
Ten years to get diagnosis, had to research myself!
Two horrific surjurys two(mend) a perennial hernia
Now with mr baranofskis team and traveling to London shortly for injections into alcocks.
in that I HAVE to sleep in a peculiar way to 'bridge/support' my pelvis and when on lyrica I was sleeping any old how and waking up with major back and pelvic muscle pain. In a back to front way it shows that it does work.
