IC medications
Hello, It has been aprox. six weeks since I was first diagnosed as having IC, the first doctor (Urogynecologist) I went to appeared very sympathetic to my symptoms, but offered little information as to what I was dealing with. After 2 months of levaquin treatment and talk of doing a biopsy, I was handed a pamphlet on IC given out by the people who make Elmiron. Feeling even worse I decided to see another Urologist, who quickly ordered a CAT scan as I had hematuria. This scan rather than making me feel good as all was well, confused me stating that I had had a hysterectomy..............um NO...........still waiting for someone to "re read" the results. Part of me wants to see another Dr., but why, the treatment is the same with everyone.
I do how ever have severe headaches and some shakiness, and was wondering if anyone has had the same experience with the medications?
I feel like such a rookie, but am learning........still afraid to eat anything but bland cereals, Kava coffee seems to have no effect. I do howe!
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Hi Crissy,
I'm truly sorry to hear about the difficult and frustrating ordeal which you've been enduring with your IC and your struggle towards finding something to help ease your symptoms. Which medications (aside from Lavquin, which really doesn't stand to do much for IC, as it's an antibiotic, and IC has not been found to be caused by bacteria - though it might help if an overlapping UTI was present) and/or bladder instillations have you tried so far?
These things (meds, instillations) are not the only possible answers though. Diet can indeed play a huge role in IC management for many people, as can things like physical therapy (especially if a person has overlapping pelvic floor issues, as a great many ICes do), stress reduction (I know, it sounds like a cruel catch-22, as IC itself can cause so much stress), trying to get enough sleep (again, I promise you, I know that is easier said than done), and certain natural supplement products which have been designed specifically for, or well know as being, IC helpers (Desert Harvest aloe vera, Prelief, marshmallow root, etc). Some people have even explored routes like acupuncture and Reiki. On the flip side of that, in extreme cases, there are surgical options for IC, too.
Medications have had very varying levels of success (and failure) with my own IC; I have never found a "magic cure" (the sad truth is, not a lot of us seem to), but do find that sticking with the IC diet, using Prelief, taking some supplements, using a home TENS machine, limiting strenuous physical activity, adapting sex to make it as IC friendly as possible, and at least attempting to keep my stress levels down are all helpful things which allow me to have some days where I'm not bedridden with severe pain and symptoms.
Hematuria (blood in one's urine, for those who may be new to this term) is not a classic or overly common IC symptom, though it does sometimes occur (I'd love to know exactly why!). I've personally experienced it too. Mainly, actually, when I was just starting to have IC years ago and since then during a few periods of extremely intense flaring. I hope that when some (more competent) is able to access your CAT scan it won't turn up any other conditions which could be responsible for this worrisome symptom.
Headaches could very well be tied to a given medication, but ICers also seem to be prone to headaches and migraines (some find that the IC diet helps to reduce migraines as both migraines and IC can be effected by such food components as tyramine, which is found is foods like aged cheese, red wine, soy sauce, and smoked/cured meats - all big "no-nos" for many with IC). I would definitely keep a close eye on your headaches, recording when they occur and what you think might have triggered the headache. Such information is helpful both for yourself and when presenting your symptoms to a doctor.
Please by all means feel free to ask questions and share your thoughts here, Crissy. I'm not a doctor, just a fellow ICer, but I will try to help answer your questions and chat with you any time.
Healing hugs,
Jessica
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Jessica Cangiano: ICadvice.com creator and administrator
I have IC, but IC doesn't have me!