Help?vesicare? (doozy of a long post, be forwarned)

[partners]

I was diagnosed with IC 15 yrs ago and underwent many treatments including ditropan, amitrip, nortrip, elmiron, dmso, hyaluronic acid, heparin, sodium bicarb and xylocaine, morphine, codeine, dilaudid, percocet, oxycodone, lorazepam, diazepam (all the Pam's) and the interstim device.....all with no help. I tried all the herbals...marshmallow, uva ursi (holy crap what a mistake) as well as taking quercetin high dose with glucosamine and chondroitin and so many NPath cures I just about went broke. I would tell you about the time I gave myself an enema upside down (amazing what lengths you'll go to when you're in pain and someone tells you you're toxic) but I'm sure you can well imagine as you're all in pain yourselves. I stopped taking all medications except for occ'l oxycodone and stayed like that for a number of years.

Then I developed insomnia. Dude, the only thing I could look forward to at the end of a day of pee'ing was a night of sleep to get away from the pain and frustration and then that was gone as well. After a year of strobing from exhaustion (working all the while) my Dr. prescribed trazodone to help me sleep. It worked a bit, but I noticed my frequency lessen for the first time in 12 years. Then I was given 75 mg Lyrica because the Trazodone wasn't getting me to sleep all night. My sleep improved and I started doing deep breathing ALL day to get my parasympathetic nervous system to gear up to calm my sympathetic nervous system down (overactive HPA consistent with IC'ers). I did it at work and pt's ( I work at a hospital) would be asking if I was OK, and for the first time I was. I had two pretty good years and had episodes where my bladder capacity increased to 500 ml!!!!!! I was so happy.........and then the meds slowly stopped working very well.

I went off the Lyrica and the withdrawal was BRUTAL. I tried to keep my bladder calm, but the insomnia ramped up and combined with the IC pain I limped through the next year until finally I took time off work last November due to insomnia ( I developed shingles from stress). My Dr had retired and I had a new GP who thought I should give up the trazodone because it wasn't helping me sleep much anyways. I weaned off and my sleep actually got better, but my bladder just FLARED like crazy within 48 hours of my last dose, which was a crumb really, so I spent 6 days in pain and then went back on and it took three weeks for it to calm down even a little. Since then I have tried to switch to nortriptyline and this other Dr. told me to stop the Traz cold turkey and go onto the nortri. to see if it would help my sleep. I looked at him and said " you don't want me to wean off this antidepressant I've been on for 3 years, albeat in a small dose" and he said no, like it was no big thing. I switched off trazodone and 4 days later my bladder was horrible and I went from sleeping 3 hours a night to zero. Seriously would just lie there wide awake trying not to panic. Now, could be the nor. or could be the withdrawal, but I asked to be switched to amitr. and it was slightly better, but still no sleep. What I did notice was that my bladder capacity increased and I assume it was from the anticholinergic effects. I lasted another week and then asked my psychologist ( for sleep ) if I should try something else, so I've been trying Mirtazapine the last 3 weeks, and also recently added Prometrium.

I am only taking 25 mg of Lyrica because it is causing weight gain and constipation so bad my ass has fissures the size of the grand canyon and poo'ing is so painful I cannot even describe. It does keep me from getting anxious though. I am taking only 7.5 mg of Mirtazapine because anything bigger actually keeps you awake. The trick with Mirt. is that the larger doses no longer put you to sleep, which is the point of taking it anyway. I am also taking 3 mg Melatonin, who knows what it does and now 200mg of Prometrium because all the Dr.s think it might be my deficiency in progesterone which caused the insomnia, which was destroying my life as bad as the IC ever did.

So, my sleep is a bit better BUT bladder is worse. I did feel better on the Amitriptyline, but it kept me wide awake ( who knows if I was still going though Trazodone withdrawal though as the main side effect of it is.....insomnia).

I am scheduled to start work again and am hurting pretty badly, who knows from what...Prometrium? off Trazadone? and wonder if someone could tell me how the Vesicare worked for them. I want something to make my bladder feel like it did after 5 days of amitrip. did, but without affecting my neurochemistry and keeping me awake. ( Nortri. and Amitri. keep more noradrenaline between your synapses, which seems to agitate me )

I also don't want to keep gaining weight and the Lyrica makes me gain and I think Traz. did as well, but hope if Vesicare might help me without the weight gain.

*****So, after all this storytelling my question to you is how Vesicare worked for your frequency, and what are it's side effects that you experienced?.*****

******Also, is there a forum that discusses adrenal glands and small adrenals being related to IC?*****

It seems vets are doing better research than the urologists because they noticed the increased flight or fight response in cats with IC and then found small adrenals upon autopsy, and seem to be sharing infor now with urologists. I saw a psych after reading about that and realizing that I was hypervigilant with a greatly exaggerated flight or fight. He concurred and said I was PTSD. My 24 hour cortisol is normal, but up to 60 % of progesterone is produced in our adrenals and mine is low. What happens if your body is in need of cortisol and can't produce enough form the mother steroid pregnenolone is that it will highjack pregnenolone for cortisol production, thereby lowering progesterone production. If someone could direct me to the forum to discuss this I would appreciate it, because I believe our overactive HPA response is the cause of a lot of our problems. This may be why stress reduction exercise work soooooooooo well for IC'ers.

If you read this in its entirety, then you are hero!! Give yourself a pat on the back and a big thanks from me.

Wishing you bigger pain free pee's.

[Briza]

Hi Partners
Wow that is a long post. It might help if you go back to edit it and divide it into paragraphs and be sure to double space between paragraphs. It really would make it more readable! Just a suggestion so that hopefully you get more and more accurate responses.

You could also consolidate your questions at the end. Thanks, Bri

[ICNDonna]

One thing you might do is to write down all of your prescriptions and over the counter things you are taking --- then do a google search for "medication interactions" and enter them all. You just might find an intereaction that could be effecting your sleep patterns. I did read your post all the way through.

Sending healing thoughts your way,
Donna

[partners]

No meds when insomnia started

Donna,

Thanks, but I was not taking medications at all, and had not been for years, when the insomnia started. I had the insomnia for over a year before I started on the Trazodone and Lyrica, and they helped my insomnia tremendously, and surprisingly my bladder...but only for a while. I am aware about drug interactions and insomnia, but have been to sleep specialists and had polysomnography,and it has nothing to do with that. Yes the amit. and nortrip. were both bad for my insomnia, but I had also come off Traz. cold and that could have been the problem also.

[ICNDonna]

When you've been taking some medications for a while, it's always best to work with your physician to wean away from them. Have you talked with your doctor about possibly taking a different medication to help with sleep?

Sending gentle hugs,
Donna

[partners]

Yes, but thanks

Donna,

I knew better than to come off of Trazodone cold turkey, but it was the Dr. that insisted not to wean so.......Dr.s don't always know whats best...sadly. I work with 3 Dr's who work together to help me with sleep medications, and have been to an accredited sleep lab for polysomnography testing. I have had CBT for sleep as well. My medications aren't affecting my sleep now, they help it, except for oxycodone which keeps me up it I have to take it.

Curious about vesicare though so if anyone could tell me their experience please that would be most helpful.

Kind regards

[partners]

Yes, but thanks

Donna,

I knew better than to come off of Trazodone cold turkey, but it was the Dr. that insisted not to wean so.......Dr.s don't always know whats best...sadly, and they make mistakes and he admitted to having made a mistake by having me quit cold turkey. I work with 3 Dr's who work together to help me with sleep medications, and have been to an accredited sleep lab for polysomnography testing. I have had CBT for sleep as well. My medications aren't affecting my sleep now, they help it, except for oxycodone which keeps me up it I have to take it.

Curious about vesicare though so if anyone could tell me their experience please that would be most helpful.

Kind regards

[cmclien]

Hi,
I read your whole post! Most people the ami and nori put to sleep. The ami made me sleepy but the nori made me feel pretty wired. What is HPA? and its relation to IC?

vesicare - on to your question. I have been taking vesicare for about 6 weeks. Took oxybutynin for a couple of years before that. I like the vesi better. Won't help your pain but will help urgency/frequency and for me helps quite a bit at the lowest dose of 5mg. Alot of people it seems here anyways can't take these type of meds due to urinary retention but they don't bother me that way at all and hopefully not you either. The main side effect of this is dryness, constipation, - I upped my magnesium to about 1400mg a day to stay regular which has worked fine. By itself it actually isn't too bad, but when I combine it with something like nori it gets worse. I take it every 36 hours instead of every 24 to minimize the dryness ( I have chronic dry eye syndrome too). Other then that I don't have any side effects from it. I think it might help me sleep a little better.

Good luck to you.
Also, drugs.com has a great interaction checker.

[partners]

Just took 5 mg vesicare

Thanks for your reply!!! I am actually very fortunate that my bladder pain is reduced volume and ridiculous frequency. I don't, and have never, had the urethral pain or spasms people talk about so perhaps the vesicare will be really helpful. If I get really stressed out I have had odd spasms in my vagina, and I think that might be vulvodynia and then I totally chill so they stay away.

Overactive HPA. The only other animal that gets IC are cats and it is feline IC. When observed the cats exhibit one common trait with is an overactive flight or fight reponse. Upon autopsy these cats have smaller adrenal glands. The theory is these cats have an overactive HPA or Hypothalamus-Pituitary- Adrenal axis which is vital part of our endocrine/hormonal system. The cats, for whatever reason, behave similarily to let's say PTSD victims. They are hypervigilant, hyperalert and will release from there pituitary and hypothalamus ACTH which travels to differing glands, particularly adrenal glands, to release adrenalin, cortisol etc. The cortisol that is released acts as an anti-inflammatory thoughout the body and also is used in a feedback which stops the pituitary/hypothalamus from continuing to release ACTH, thus stopping the cycle. In these cats for some reason the ACTH continues to be released and eventually the adrenals cannot keep up the supply of cortisol, so there is nothing, or less cortisol, to shut of the ACTH production AND no cortisol to keep inflammation in check. Either the adrenals atrophy from overuse, or perhaps they are small from birth who knows. It is a fact that they find that there is less cortisol found in the urine of IC pt's in flares than IC pt's not in flares. More cortisol equals significantly less pain, but these were small groups of people I think.

When I learned this I went to a psych who diagnosed me with PTSD which correlates with overactive HPA axis. I believe the trick to reducing pain (for me) is to undergo CBT to rewire the brain to not default into flight or fight at stimulus that other people don't react to . This is harder than it seems, but I have achieved some success. I will also mention that for everyone I have talked to with IC, they mostly self report that they do have a heightened startle response, and that intense relaxation (which is behavior modification) seems to help immensly. I find drugs like traz. or Lyrica have helped me achieve this state, but want to do it on my own.

Sorry, I could go on and on and will stop now. I will say this, veterinarians have done some awesome research for IC patients and if I can find the research papers I will post the links.

[cmclien]

Hmm that is very intersting, thanks for explaining. So how does that relate to our bladder linings being compromised? That whole thing is interesting because I often experience adrenaline rush to the most minor things, my heart pounds, I feel weak, I mostly have learned to try and ignore it and just go on even though my body is in freak-out mode. I can have it come over me (the adrenaline rush) over something as simple as doing something new, going somewhere, thinking about having a conversation with someone. I have thought I must have social anxiety or something though I'm not particularly shy or anything. I remind myself people can't see it happening inside me and I try and tamp it down.

The vesicare really helped me with pressure too I forgot to mention. I never have direct pain but do get pressure that makes it feel uncomfortable to stand like my bladder is going to fall out or something.

[partners]

bladder lining

Your adrenaline rushes sound very similar to overactive HPA type symptoms that I have heard described by others, and how I would describe myself. I also feel too much anticipation before events that other people would be more relaxed about, even if it's something fun. Sometimes I get so worked up about something fun that I would make by frequency increase, it's like my body cannot differentiate between good or bad excitement because either causes overexcitement and the resulting catecholamine cascade that leads to pain. I wish I could tell you why that affected the bladder lining. Sometimes I wonder if it the adrenaline release causes us to involuntarily tense out pelvic sling which seems to cause increased frequency.

I do know that I have aborted flares by religiously doing yogic breathing which is an inbreath of 4 counts, hold 4 counts, exhale 8 counts and wait four counts before your next inbreath. I will do this over and over sometimes for days because I work in a hospital and it's the only thing I can do relax in front of my patients. What this does, and there has been testing, is cause your parasympathetic nervous system to override your sympathetic nervous system a bit and it keeps you centered and less likely to go into flight or fight, or have that involuntary adrenalized response we can be prone to. CBT works by consciously being aware of your surrounding and how you respond to perceived stressors, and then modifying that response with different tools like deep breathing.

Essentially what you are trying to do is interrupt the conditioned adrenalized response to your environment. I found that when I was put on trazadone AND then did the deep breathing religiously, my bladder finally got better for the first time ever. I added Lyrica, which is approved for off label use for generalized anxiety disorder in the UK, at a 100mg dosage and things only got better. My bladder went from a quarter cup capacity to 400 ml and frequency was reduced. I could eat whatever I wanted. If I stopped doing the deep breathing exercises and allowed myself to stress my bladder would tank even though I was on both medications. In fact I had one of my worst flares on the meds after I stopped doing the relaxation stuff and was doing some work I resented. I really believe sometimes my soul is in my bladder and whenever I stop nourishing it.....it freaks out (my metaphysical viewpoint).

Needless to say, I believe there is a link between the HPA and the bladder for us, and am happy that they are investigating it more now. If you want to try to help yourself try the pranayamic (spelling?) methods and see if you can mediate your response to your environment. It's rewarding and I am starting to do it again because I got off track a bit after switching meds recently and now it's time to get back on the horse.

Here is a link to just one article about adrenal size and feline IC

http://ckm.osu.edu/sitetool/sites/Indoorpetpublic/documents/hospital/indoorcat/westropp03.pdf

I believe a solution exists here, but haven't found it yet. In the meanwhile I encourage IC'ers to modulate their stress response as best they can and if meds help them to do it go for it.

[partners]

Forgot to ask how long it took the Vesicare to work?

How long did it take to work? I just took some this morning, 5mg. Now I'm off to do my deep breathing in the bush with my dog.

[cmclien]

Within a day for me, by the 2nd and 3rd, even better where I felt a relaxation in my bladder. I didn't know it was tense until the medication relaxed it, I think that relates to the pressure feeling. Though I have read on-line to give it up to a month for full results, it was almost immediate for me. Hope it is for you.

[carlaincalif]

I started vesicare about six weeks ago and it started working within a few days! I take 10mg in the morning and have found that my trips to the bathroom have decreased significantly. It does dry your mouth, but other than that, the side effects have been minimal. For me, vesicare has made a huge difference in my quality of life.

In addition to Vesicare, I take Elmiron, Ataraz, Elavil, Premarin and a blood pressure med.

[partners]

36 hours and slightly less frequency with vesicare

OK, so it's been 26 hours with 10 mg of Vesicare and I think maybe there's a bit less frequency. I started back at the hospital today and ER was mental so it hurts after I think from the pressure cooker atmosphere, not sure.

Hope for less frequency tomorrow.