Question about meds and pain levels

[jess188]

I am now on an increased dose of Neurontin 2400mg and Elavil 25mg, and as I keep a pain journal, my pain is around a 2-3 with the drugs, laying down, walking, hiking or standing ( sometimes more a 2 than 3) but higher sitting even on a cushion. ( around a 6-7) maybe more with my period. Is that good?
My Neuro said that I will not get a 0 pain level with meds, it may be time and such after the nerve has time to heal. i can't judge the pain that much with the period,. ( right now) as it is higher, but would you call it successful with a 2-3 pain level with the meds I am on? ( other than sitting) What do you experience?
thank you

[Claredale]

For the most part, I consider myself in remission with meds. I have tried for years to no longer need meds, but a few years ago, I finally realized that taking meds that my doctor feels is appropriate, and my pain level is low and sometimes non existant, I consider myself very lucky.

I am glad that Neurontin is working for you. I don't know what the average dose is, but as long as it is making you have the ability to manage your pain, I am so glad for you!

I don't know what at times I get it in my head that I can drop some of my meds, but my doctor that I go to now and my doctor that I can email for advice

As IC patients, we all know that taking meds for our disease is no different than those that deal with high blood pressure, diebetes or other health issues. When we are fortunate enough to find what is truly working, we are back to "almost" feeling like we ued to feel and that is a great accomplishment!

Hugs, Tracey

[leelee88]

Before getting the right combo of meds I was at a level 8 daily pain.. When flaring it would be 10 sometimes.. With the combo of meds I was on most day were at a 3/4 to me that was great compared to an 8.. BUT I recently have added another med to my mix. I stopped the Atarax and added Lyrica.. So now I am on Lyrica, Tofranil, Topamax.. And I am having painfree days! So sometimes it might take more that one med to help you get a better pain control level..I am also suspected to have PNE.. Will be having test for that soon. But its is almost certain.. And with the Lyrica the pain is gone most days..But I still have flares found this out when it came close to my period..Which I do not have but it was still around that time of month..

[Kara29]

I call a success a day where I can enjoy outdoor activities with my Husband and Family. It's hard to put a pain level scale on my days b/c some days I will feel good for hours and then get put under without notice. I guess that is whey I am on disability because I can't predict my pain..........I hate that part!

As Ronda is doing, I may have them add another anticonvulsant to the mix of my meds. I take Lyrica but wonder if Topomax as a trial run will make the pain reduced or not........

Kara

[chinson]

Hi Jess188
I have been communicating with you on the PN chat room also. Pain at the 2-3 level with meds is great. I am in the process of coming off of neurontin at 2700 mg daily and will start lyrica next. I seem to have a good day (1-3) and then a bad day (5-6) and so on and the only thing that I can think that makes a difference is activity. I live in Richmond VA but my family is in Charlotte and I go there about 1 wk per month. I am curious who you see in Charlotte. I have travelled as far as Annapolis and DC for Drs and was thinking that I could try someone in Charlotte also. I have a great PT in Richmond.

[Kara29]

I find that just the activity of sitting causes the pain to increase. As soon as I lay down, I start to feel better most of the time. I have to PNE Cushions one from the UK and one from Australia. They help when I need to sit for long periods of time.

Kara

[Kara29]

I know it sounds so crazy not to sit, but PNE patients that get any possible chance to stand or lay down, take it. The Pudendal Nerve Damage can get worse and then harder to treat via meds and operations. It's a lifetime adjustment at the most. I carry my cushions with me no matter where I go and I am no longer embarrased. When I am home, I lay down most of the time. I know when the time is up for sitting comes. I get severe urgency beyond belief and a pain level of 10. It's hard to come down from a 10 especially when I've already taken my pain meds. So then comes the ICE Packs that I've created and the nice bed that I have.............within an hour, I can usually calm the flare down but it suck that I can't sit here in bed any type all day. I just can't and have listen to what my Body says. I'm so afraid my PNE Decompression isn't going to work or will be a wasted trip, money, and surgery. I'm just down in the dumps b/c of the Hoiday season.

I can only sit in my bed with the laptop for about 20 minutes.............however if I go out to the dining room and sit on one of my cushions and sit properly, I can sometimes avoid this flare situation. I like to be with my Husband so I rarely go out there to do it unless it's during the day.

Kara

Kara