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  • ICNDonna
    replied
    I suggest you read the information at http://quackwatch.org/search/webglim...uery=spirulina before you spend your money on spirulina.

    Donna

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  • LeeAnn
    replied
    hydroxyzine

    Well yes it does make me drowsy even though I've been on it for FOUR years. I did adjust to it a little, but it still makes me tired. That's why I only take 50mg in the day and 100mg at night. When I'm feeling really lousy I'll take 200mg at night. My doc told me to do that only occassionally. Or else I'd take 200mg permanently!! I know what you mean about not wanting to take too many meds. I was resistant as well. Up until recently I used only the hydroxyzine to control symptoms. But even then, I was peeing 30 times a day. Since this awful flare began 6 weeks ago I actually feel better NOW than before the flare, now that I'm taking these meds. Today I was down to only 15 times on the potty!!! Now that I'm feeling better, I'm not going off of them! I wish I would have tried them sooner. (I have mod-severe IC). I too, kinda hate to be on so many medicine. I feel like I'm giving my power away. But they *do* work, so ..............

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  • cosette
    replied
    Spirulina is thought to restore the lining of the bladder naturally.

    My doc originally prescribed 300mg a day, but I got scared- I am usually anti-med...if I eventually up the dose, does the drowsiness go away after an adjustment period?

    By the way, Mom-in_Ma, I am in MA as well.

    Leave a comment:


  • vm
    replied
    Do you get seasonal allergies? If you do, that could be leading to some increase in symptoms. It leads to flaring for some ICers. The antihistamine would help with that - can take a few weeks to really start helping.

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  • LeeAnn
    replied
    oh yeah

    And also I have found that I need more than 25mg of hydroxyzine....I started with 50mg and over a few months built up to 100mg at night and 50mg in the morning.

    And spirulina? Hmmm...I haven't heard of that one. I'm gonna have to check into that.....I know I've seen it at healthfood stores.......

    Leave a comment:


  • LeeAnn
    replied
    hi

    I'm so sorry you've had such a rough go of it lately.

    But hmmm, what stood out to me what that you're only on 100mg of Neurontin. It is my understanding that the "goal dose" is 300-1200mg three times a day. I just started Neurontin on 4/2/07 and took 100mg 3x/day for the first week, 200mg 3x/day for the second week, and 300mg for the thrid week. I could tell a HUGE difference as soon as I jumped from 200-300 about 3 days ago.

    Prior to 3 days ago I was using 4-5 vicodin per day and now I'm immediately down to 2-3. My doctor wants me to continue increasing it each week until I don't need the vicodin. (I just started the vicodin about 2 weeks ago so I'm not concerned about addiction or tolerance YET).

    I read somewhere, but don't remember where, that a lot of ICers need 900mg 3x/day to get relief. However, I think I might be able to ditch the vicodin all together in a few weeks with maybe only 400-500mg 3x/day of the Neurontin.

    Anyway, just thought I'd share my thoughts on your Neurontin dosage.

    I wish you much luck and hope you feel better really soon. Take care.

    Leave a comment:


  • mom_in_ma
    replied
    You sound so much like me...I can keep my ic under control much of the time and function in life, but every once and awhile a flare throws me for a loop. My guess is that it could have been either or both the intimacy or the soup. For me, it's stress!

    Anyway, hope you are feeling better. I had been doing well on antihistamines and the occational xanax when needed, but finally broke down and started elmiron about a month ago. I'm feeling much better (knocking on wood as I say that), but don't know if it's the meds or just time and diet getting me out of the flare. Probably a comination of all three. By the way, only you can determine if you need a hydro or not. I've opted not to have them because I worry about causing more pain. IMO meds are usually reversable, but the surgery is not. However, they have helped others.

    Leave a comment:


  • cosette
    started a topic So frustrated

    So frustrated

    Hi all-

    Well, I need advice. I was doing SO well...the only thing I was on after a terrible bout with amitriptyline was my compounded T cream for a hormonal imbalance. I've been on that for 8 weeks, and it has helped my joint pain, vitality, and libido immensely.

    Since 2 days after Easter, I've been flaring. The pelvic pain comes and goes (day on, 2 days off), but the urgency, nocturia, and frquency have been intense- I was down to 1 to 2x a night and then went back up to 5. I went to a new Uro, gave her the results of my Potassium Test last Sept (which were vague- not clear cut), but based on my history of bladder issues, voiding diaries, etc. she feels strongly it's mild to moderate IC. She gave me Neorontin (100mg) and hydroxyzine (25mg at night), and spirulina tablets 3x daily as first line therapy. If in 7 or weeks that's not working, she wants to do a Cytoscopy with Hydro under aenathesia...

    Well, over the weekend, I was feeling, pretty good, but drowsy. But good. One night I even went only once! Today, though, I had a tiny bit of soy milk and have been paying the price a bit. If 10 is the worst, I am at a 4. I'm gonna take the hydroxyzine soon...

    So ICers, can I expect good results from these meds? In the past I've done detrol, ami, tons of physical therapy, refused DMSO, had a cytoscopy with urethral dilation (HORRIBLE- but eventually had 3 symptom free months).

    Overall, sometimes I suffer, but I feel when it's bad it's tolerable. I can work, do my life, etc. But today is bad. I've had days, weeks, where Indian food and burritos are fine.

    I guess I'm overwhelmed. Since last August, this has been such an arduous process. I was doing so well in Feb/March! I can't figure out if intimacy or my Grandmother's homemade Polish soup made from vinegar and rye set me off at Easter. I know, I know...that was crazy. But she's 86, and I had to be respectful. I had been doing so well.

    I am pretty IC diet conscious for the msot part. But when I feel good, in remission, I start to teeter. Food is so amazing- how can we not enjoy once in a while?

    I'm just going on too long now. Someone, please tell me if I should have the cyto or just wait it out with the meds. I hate meds. But I wanna believe they're helping....myabe I'm falring b/c I'm going to have my period.

    Oh...it's just a lot, you know?
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