Announcement

Collapse
No announcement yet.

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

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • greeneyes
    replied
    I too take Vesicare along with rapaflo. These meds together have reduced my "going to the bathroom".

    Leave a comment:


  • vivsmom
    replied
    I just began my IC journey (dx with possible in May). I work at a hospital (public) and I KNOW that I walk around just jacked up all the time. I'll seeing a therapist and trying Mindfulness Meditation.
    I know what you mean because, not really reated to food, I hurt after a day of work and not on the weekends .
    Lets talk more!

    Leave a comment:


  • BiblioGrrL
    replied
    This is a really interesting thread. My husband is always laughing at me for startling so easily. I, too, tend to get hyped-up about both good and bad events.

    Let us know how the Vesicare works, please. Frequency seems to be my primary problem at this point as well.

    T.

    Leave a comment:


  • partners
    replied
    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.

    Leave a comment:


  • carlaincalif
    replied
    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.

    Leave a comment:


  • cmclien
    replied
    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.

    Leave a comment:


  • partners
    replied
    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.

    Leave a comment:


  • partners
    replied
    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/In...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.
    Last edited by partners; 03-17-2011, 02:01 PM.

    Leave a comment:


  • cmclien
    replied
    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.

    Leave a comment:


  • partners
    replied
    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.

    Leave a comment:


  • cmclien
    replied
    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.

    Leave a comment:


  • partners
    replied
    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

    Leave a comment:


  • partners
    replied
    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

    Leave a comment:


  • ICNDonna
    replied
    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

    Leave a comment:


  • partners
    replied
    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.

    Leave a comment:

Working...
X