New- Anyone w/BPPV/Menieres?

[kayrol]

I am new to this board. I have finally been diagosed with IC. I have had it for 10 years. First FEMALE uro did extension but not "classic" pinholes were seen, however she felt that dispite this, I had IC. She left town, naturally. So after 10 years of MALE uros, I finally found a FEMALE who is treating me for IC. Going to try Elmiron first, but she suggested the "pacemaker." (forgot the name)

I was also diagnosed with Fibromyalgia 10 years ago, bad neck and shoulder pain for 3 months, have not had this extended pain since. During these last years I have had urgency, pain, UTI's and pain like UTI with negative cultures. (Fortunately, I my pain comes and goes and is not incapacitating and I am hoping it doesn't come to that).

I also have had throughout my life since childhood episodes of vertigo upon awaking in the morning, lasted a couple of hours. However, 2 months ago, I had two attacks and the last one lasted over 24 hours--put me in the hospital. I have not been able to sleep on right side or flat on back for 2 months without getting dizzy. I have a great ENT specialist and I am being treated for BPPV (benign proximal positional vertigo). However, I believe I have Menieres Sndrome (similar vertigo, tinnitis, hearing loss). But I don't have hearing loss and the tinnitis comes and goes.

During the hospital stay, I incidentally had a brain MRI which showed lesions. After seeing 3 neurologists, the diagnosis is that I don't have multiple sclerosis (the findiings of the radiologist). However, I need a repeat MRI in January to make sure no more lesions are present. (Otherwise, I may have had these lesions for many years and they are insignificant).

I have been researching Fibromyalgia, MS (can cause brain lesions), IC, BPPV/Menieres, and Lyme Disease (can cause brain lesions) for a LONG time. What I have learned about IC is that many with IC also have other syndromes/diseases and vice versa with the others. My symptoms cross related to all of the above. I was wondering if anyone out there also had BPPV/Menieres, or dizziness problems?

I have had pretty good luck lately with doctors like my urologist, the ENT ear specialist, and neurologist. My goal now is to find a doctor or any of the current ones who will CONNECT THE DOTS as I really believe there is a connection.

Kayrol

[kayrol]

Thanks for the advice, tojanetoo.

Looks like I need to do more research on the interstim. I thought it sounded a little drastic, too, especially since my pain is tolerable. The elmiron is something to try. It seems like it has something to do with blood flow and the word in the Menieres world is that Menieres may be due to iterruption in blood flow. Who knows, maybe it will work for both?

Forgot to mention, too, that I have hypothryroidism and had a hysterectomy last year for adenomyosis (kinda but not quite like endometriosis).

I am a walking encyclopedia of syndromes! Believe it or not, I find it rather comical. I take as little meds as possible, try to exercise, and you have to think positive. I don't always, but what the heck--there are people with more problems than I.

[patricia1]

Hi guys I have had IC for 9 yrs now. Please do research before opting for the Interstim. I have had mine since 2001 and had to do a revision for it in May 2005 due to a car accident in which the leads moved. The Interstim is for Frequency and Urgency and not pain. If pain is your main problem with IC it is likely that the Interstim will not help with this. I have never gotten pain control from mine. Although there are a few who have had this added bonus, most do not. As with any treatment option there are many ups and downs and with the Interstim this is true. So have had great results and could not live without it and some like me have had more problems with the unit itself to out way the benefits. All I am saying before considering this treatment, make sure you have tried everything else, this should only be consider as a last resort when all other treatments have failed. Best of luck to the both of you....

[patricia1]

Kayrol you will find that IC does coinside with many other illness and/or disease. Fibromyalgia being one of them. I sometimes do have problems with dizzieness, but not on a normal basis. Also it seems that Allergies, Migraines, IBS, Endo and some other illiness fall along with IC. I never had problems with Allergies, Migraines or Asthma until after I got IC. Who knows. Wishing you luck....