One more thing.. What are your pain levels WITH meds?

[jess188]

I am going to titrate to 1800mg tomorrow on Neurontin. I don't take a tricyclic antidepressant . I take an SSRI ( lexapro) which doesnt do anything for nerve pain. What are YOUR pain levels for the day WITH medications? Should I be able to be happy and function with a level 5 or 6 ( with meds) / Or should I be expecting a level 0-2 with the medications?
Besides side effects ( i dont have any with Neurontin) why would you switch? How long do you wait to see if it is effective?

I know lots of questions, but i am new to this.

thank you Jess

[Briza]

Considered one of the lower tier pain meds, Tylenol 3 can bring my pain from as high as 8 to ZERO within an hour and the pain does not return that day, with only one dose. Just my personal experience with this med. It may not work so well for everyone...I have tried stronger pain meds that DID NOT relieve my pain, but caused side effects that made me unable to work or drive. Tylenol 3 just seems to be the one that agrees with me and works for me best.

[Kara29]

Jess,

Just for my own self and own experience, my pain level with the right combo of meds sometimes can go down to a 2-3 out of 10. Sometimes I have bad flares and the pain meds don't do much. It's different for each one of us so it's hard to give an objective level for you.

The other PNE members will chime in at some point and offer up what they have been through as far as pain meds and PN/PNE go.

Thinking of you and wishing you a pain free night or a pain LESS night:hi:

Kara

[jess188]

Thank you . I hope to get to a 0-2 with meds. My doctor wants me to start Elavil, so I wil start at 15 mg and see from there. I hope to not have too many side effects, and see what it does for the pain. :)

[RobinD]

When I was taking Elavil and Lyrica together I had no pain and never found any food that would bother me. I stayed away from the very bad foods, ex:pop,choc,spicy, etc. I felt so good but I had too many side effects. He switched me to Neurontin in place of Lyrica, but still had side effects. So I quit those and started Tofranil. It doesn't work as well but I do have painfree days. Praise God!When I start hurting I take Tramadol. I also watch my diet and eat safe foods. Here's hoping for painfree days for you.

Healing Prayers
Robin

[kadi]

With my meds (see list below my name) - on a good day, I have some time at zero, some time at level 1-2. I rarely have a whole day without symptoms, but I need to be able to drive & function, so I can't do round the clock pain meds...

The main thing for me though is diet - if I don't follow the diet, every day, every minute, my IC becomes pure hell & my meds don't come close to managing it...

[jess188]

Thank you all for responding .
I just began the Elavil last night, and slept like a log. Will post as I see how it works on the pain. Thank you for the info too on pain levels, as i dont know what to epect. Do you find it flares more during that time of the month?

Can you tell me more about the IC diet? is it like a low oxolate diet?

thank you :)

[kadi]

Here's a link...
http://www.ic-network.com/diet/
Be sure to check out the "cheat sheet". I printed it out, put it on the fridge & ate only out of the left hand column initially. My pain level dropped more from that than from any medication... And my meds are worth nothing if I don't follow the diet.
Good luck!

[jess188]

Thank you . I have IBS, so I think it would be good to follow a diet that would also help with this pain. thank you again. :)

[Kara29]

You asked about the low oxalate diet..........

Here's a website: http://www.branwen.com/rowan/oxalate.htm

Also a lot of IC Folks have other pelvic pain conditions. Some day they will finally find the link to all of these diseases.

I wrote to that show the Doctors wich is a spin off from Dr. Phil but I have heard nothing back. I wanted them to talk about pelvic disorders on the show so we can make sense out of some of this and then get more of us on the road to recovery.........

Kara

[Katrina]

I am at a 0-2 and dont think that is 2 much to ask 4. on time 4 med 2 work depends on the med. some meds should only take about a week....some more. i hope u can find relief too.

[jess188]

Thank you for the responses. I am now on 1800 mg of Neurontin, and will have to give that 4 weeks to see how it works. I was just put on 10mg of elavil and will titrate to 25. i need to give my meds a chance.
Thank you for the IC diet link. I think I will print it out and put on the fridge, as I need to watch what i eat anyhow becuase of ibs, so low acidic foods are a must. I need one cup of coffee a day, as that is my " treat'

[kadi]

Try a low acid decaf if you really insist on coffee.
www.puroast.com

But, if you are serious about getting better... it doesn't make sense to be undermining your body's healing by drinking a "treat" that causes most IC patients pain & frequency. Please consider stopping the coffee & any other bladder irritants for at least a month to see if your symptoms improve.

If I drink even 1 cup of decaf coffee a day, my meds do not work effectively & my life is disrupted to the point it is unfair to not just me, but my family, friends & employers.... And the only way I knew this was by stopping the coffee for a month. I was really sad when I had 1/2 cup of dilute decaf & my symptoms shot back up again (in spite of meds), but I value my health, relationships, & employment enough to let it go. Find other treats!
(Flowers, crafts, magazines, white hot chocolate, hot mint tea, pets!) :cat:

[Briza]

Coffee was a hard one to give up and it took me a while to stop drinking it completely, but it is one of my few but main food triggers so it was necessary. First I switched to decaf w/ half milk. Then to only on the weekends, then I just finally phased it out completely and started making chammomile tea in the morning instead. I won't lie and say I stopped overnight...it was probably about a year long process, but it was for the best and now I don't really miss it at all anymore. Cutting out the coffee has definitely decreased my frequency, urgency and pain, so Jess, if you can give it a shot to at least go some days without coffee you really may feel a difference. Worth a try, Best wishes :)Bri

[jess188]

You girls are right. It would be better to lessen the pain, than be in pain and enjoy the coffee. I am going to give it a shot, and just substiitute something else to drink in the morning without the acid. I appreciate your advice.
One of the main reasons I liked coffee inthe morning, is that I felt it helped me go, as I also have IBS, but I imagine I can try foods that help more with that.
Kadi, I like your directness! :-) I like mint tea, how about cammomile? I need to find other treats like you said....

I will give it a shot, and since I am already keeping a daily journal, I will take note of how I feel without it.. ( pain levels)

jess:)

[ICNDonna]

Try thinking of it this way --- you don't put your hand on a hot stove burner (I hope) because you know it will cause pain. You know coffee causes you pain ---

Sending encouraging hugs,
Donna

[Kara29]

I hope the pain meds (Neurontin) start to work for you. Somtimes a little dose change can make all the difference in the world with those meds. I just had my Lyrica Increased while I wait for PNE Surgery in May or June. I am hoping for some pain improvement.

Well Wishes,

Kara