Health Organization for Pudendal Education

I asked this question at the end of another post, but it really belongs here

for those people who have had some relief using neurontin, how long has it taken you to feel some improvement once you get the dose high enough? right away, or have to be a bit patient?

thanks all

After I got up to a large dose (which I did very quickly, for pain relief) it took 1 week or so to feel the results. I'm up to 2700 mg and although I feel "sore" a lot, I haven't had a flare since a few days after I got up to the large dose.

wow, nice result!!!

any side effects? apparently none bad enough to cause you to reduce the dose

taking valium also?

Wow. I am flabbergasted at the dosage you are on, and with no "step up" to see how you tolerate the drug. I was started at 600 mg. day about a month ago. The Neuro said this was a high dose. The first days were rough but I started feeling better at maybe day 4. BUT, I also had some very weird neurological symptoms. For example, I had a steel pin put in my leg when I was 13 to fix a trick knee. It used to tingle for a few years. Now I am 62 and it started tingling again..... freaked me out. Finally at day 6 I developed a panic attack, and was told to disconinue it.

I am glad for you that gabpentin/neurotonin is working for you. You are saving a bundle....

I am now on Lyrica, which seems to work and definitely doesn't have the adverse side effects of gabapentin, but I am fiddling with the dosage. Prescribing this for PN is definitely "off label", so there are no FDA approved dosage guidelines. Unfortunately my neurologist not that experienced and is not familiar with PNE or PN . She overreacted and freaked out by my reaction to gabapentin and refuses to give me more than 150 mg./day of Lyrica.

I live in DC and need to find an MD familiar with PN and PNE ASAP. This woman knows nothing.....

Send a pm to RJR. He may have some advice on doctors in your area.

Fluffersmom,

I was desperate for pain relief, so I went up quicker than I should have. I had flu-like symptoms for 1 day but did OK other than that.

I am starting to get some clitoral pain again in the evenings, so even this dose isn't helping entirely. I'm actually considering surgery now.

cm

update....

up to 400mg/day of neurontin...no reduction in numbness yet, and side effects are tolerable..a bit "confused" at work, but not enough to get me to stop increasing the dose..doc wants me to get to 600mg/day to determine if it will work for the numbness

meanwhile I am concerned that the area of numbness has extended up into the lower abdomen and down into my thighs and getting worse

have an appt with my neurologist on fri for some nerve conduction study tests..he is going to start with my legs and take it from there depending on the result

when I am there on friday, I am going to get a prescription for a brain MRI with contrast to rule out MS, now that the numbing has extended past the area innervated by the PN nerve branches

I would feel awful stupid going for PN treatments if god forbid I had MS

I have had a bunch of pelvic MRI's, one of the sacral spine, and one of the lumbar spine with no significant findings, except for Fillers pelvic MRN, where I got my definitive diagnosis of PN neuralgia, likely PN entrapment, and venous dilation (pelvic floor congestion)

time for a brain MRI which I should be able to get very quickly after getting the prescription on fri..no shortage of imaging facilities in my area..wait is usually no more than a day or two, and they fax results to doc within 24 hours usually

I think it is unlikely that it is MS because of the way it presented, but it does fit to some extent...numbness in any area is usually the first early symptom, but it would be silly not to rule it out given the progression of the numbness

virtually everybody here is complaining about pain and not numbness, that is another big reason I am anxious to rule out MS, numbness does not seem to be that common with PN issues though it is obviously a symptom, especially if the numbness is in the exact area of the PN distribution

thanks all for caring, listening, and helping..wow, this forum has been such a help..people here are soooo caring, and it is greatly appreciated

Bathsheba,
You have to have your doctor use an ICD-9 diagnosis code that is FDA approved for Lyrica to get the insurance to pay. Fibromyalgia would be the one to use. If your doctor won't use it, google the symptoms of fibromyalgia and tell him you have them. I am now on 600 mg. per day of Lyrica and it has been a big help. Quite effective with minimal side effects in my case. You have to be your own doctor with this problem. Until you get to a PN specialist, you will know more about PN than any doctors you are likely to run into.

Don

Hi - I just went to my pain doc yesterday, I was on 2100mg of neurontin, and now I'm trying 2400.... I think it helps a bit for me, takes the edge off. It took about a month for the 2100 dose to "not make me feel fuzzy". So this a.m., I took the extra 300, and I do feel sort of fuzzy now.
I will give it a week or two, and see if it helps. I was told by my pain doc that the minimum theraputic dose is 1800 mg, and if you go past 2400 mg for an average adult, it may not really have much difference. He does have patients go beyond, up to 3600mg, but again he says studies show not much difference in relief.

It does not take all the pain away (I wish!), but I've had no weight gain, or other symptoms that I can tell. I still need vicodin or Tramadol or something now and then, or to get through a sitting event.
I wish it would help with the annoying aching, nerve pain that goes down both legs! I'm working on that, and the next drug I'll try is cymbalta. Gosh, I never used to take medications, guess those days are over.

Good luck everyone,
Debbie

pn_person wrote:update....

up to 400mg/day of neurontin...no reduction in numbness yet, and side effects are tolerable..a bit "confused" at work, but not enough to get me to stop increasing the dose..doc wants me to get to 600mg/day to determine if it will work for the numbness

meanwhile I am concerned that the area of numbness has extended up into the lower abdomen and down into my thighs and getting worse

have an appt with my neurologist on fri for some nerve conduction study tests..he is going to start with my legs and take it from there depending on the result

when I am there on friday, I am going to get a prescription for a brain MRI with contrast to rule out MS, now that the numbing has extended past the area innervated by the PN nerve branches

I would feel awful stupid going for PN treatments if god forbid I had MS

I have had a bunch of pelvic MRI's, one of the sacral spine, and one of the lumbar spine with no significant findings, except for Fillers pelvic MRN, where I got my definitive diagnosis of PN neuralgia, likely PN entrapment, and venous dilation (pelvic floor congestion)

time for a brain MRI which I should be able to get very quickly after getting the prescription on fri..no shortage of imaging facilities in my area..wait is usually no more than a day or two, and they fax results to doc within 24 hours usually

I think it is unlikely that it is MS because of the way it presented, but it does fit to some extent...numbness in any area is usually the first early symptom, but it would be silly not to rule it out given the progression of the numbness

virtually everybody here is complaining about pain and not numbness, that is another big reason I am anxious to rule out MS, numbness does not seem to be that common with PN issues though it is obviously a symptom, especially if the numbness is in the exact area of the PN distribution

thanks all for caring, listening, and helping..wow, this forum has been such a help..people here are soooo caring, and it is greatly appreciated

saw my neurologist today for some nerve conduction studies..all essentially normal..checked one arm and one leg

asked him if he thought it made sense to do a brain MRI to rule out MS, and he did not think it was MS, but he wrote me a subscription for an MRI of the thoracic spine..he had already scanned my sacral and lumbar spine (both negative), but since the numbness has spread beyond the distribution of the PN to the lower abdomen and upper thighs, he said it made sense to scan my thoracic spine

I asked if a spine issue that high could cause the genital/perianal numbness, and he said yes, it needs to be checked...said a problem there could effect nerves down at the sacral spine

so while I am increasing the neurontin dosage, I will make an appt, and get the thoracic spine scanned

must be by 10th MRI, omg