Daily lidocaine instillations?

[lola99]

After dealing with constant discomfort for the past year plus, I have recently (yesterday) started twice daily lidocaine instillations. So far it seems to good to be true- this morning I held it for 5 hours before going to the bathroom.

I am wondering if anyone is on a similar program, and if he or she experiences any side effects. I'm feeling a bit foggy right now, plus I have a bad taste in my mouth. If you do get side effects, do they get better?

Thanks!

[nat13]

I do elimiron/lidocaine/water/sodium bicarb instills twice weekly. I have never noticed a bad taste or other side effects, although in the beginning it would seem like I would have little patches of broken blood vessels on my skin later the day of or the next day after doing a treatment. But, these are only two times a week, not twice a day. The doctor said that there was no way that the preparation could get into my general system, but I do not believe that. That is a lot of stuff to be putting inside of you and blood vessels, especially those which are irritated and inflamed, are much more permeable than those that are in healthy tissue.

I would be curious to know if others have had any side effect from instills.

[lola99]

Thanks for your reply. I realize now (after looking at the FDA lidocaine website) that I probably overdosed on the stuff, holding it in for as long as I did. (I definitely had some of the symptoms- feeling alternately hot and cold, dizzy, etc.) I thought it was pretty harmless, but I guess I learned something important about the dosage. I did it twice yesterday but only held it for 2 hrs a time and had no problems, so there you go. It gets so confusing trying to manage all of these different medications.

Thanks again for your reply, I'm still curious to hear from others who have a similar dosing regimen, though I know I am at the extreme end of the spectrum.

[kadi]

I do heparin/marcaine/sodium bicarbonate instillations twice a day. They have restored the quality of my life and saved my career. I do one before bed (an hour before so I void the solution before sleeping) and one when I get up in the morning. Do ask your doctor about "hold time" for your instillation formula - it depends on what is in the instillation how long you should hold it. I hope you get equally good results to mine! They've been a huge relief to me

Best,

[nat13]

If I may ask, just as a point of comparison, how much were you in each lidocain instill.... and you know, now that I think way back, I seem to remember perhaps getting a little dizzy after the instill. I think I remember asking the doc and they just pooh poohed it away - that was when they told me that none of should be able to get in the bloodstream. Hee hee, guess what, they were wrong, but they were well intentioned! I am glad you figured it out and that was all it was and not something else!

Nat

[L. Thomas]

Ask your MD about holding the instill. There are so many factors that can affect the instills and there are 100's of recipes. Dr. Dell said it didn't matter how long I held my cocktail. Most of the effect of the instill will happen in the first 20 mins or so. I usually do the instill at night before I go to bed so I can get a good night's sleep.

I have been doing instills for several years with 100% control of my symptoms. I started with 3 weekly and had to increase to daily for several months.

Allergies are directly connected with IC flares. so for me, when seasonal allergies flare so does the ic. During those times I have to do instills almost daily. For the rest of the year I may need instills every 3 or 4 weeks..not even sure.