View Full Version : Hi, I'm new :)
08-25-2004, 04:01 AM
Hey all. I was diagnosed with IC in June, after about a year and a half of being told that it was either "in my head" or a UTI (but nothing ever grew in any culture). I just wanted to introduce myself. My name is Marissa. I am 23 years old and a graduate student in Psychology :woohoo: I am getting married in June 2005 to my high school sweetheart, who I've been with for over 6 years :smile tee
I'm currently on Elmiron and Ditropan. I took myself off Atarax last week because I just couldn't wake up when I took it! Has anyone else had that problem? My alarm would go off for 2 straight hours and I couldn't even get up.
For those on Elmiron and/or Ditropan, do either of these really work well?
One last thing - I'm very confused about the course of IC. What happens - does this progress and get worse as I get older?
Thanks for any advice/suggestions/information you can give me!
08-25-2004, 04:29 AM
Hi Moby! Congrats on getting married!! What have you accomplished so far? The only things Josh and I have left to do are booking the limos and picking out invitations. We've been busy! What kind of ceremony and reception are you having? I told Josh that I only wanted about 50 guests, but by the time my mom got through with the list, we had over 300. Are you on Bextra for tension headaches? That's what I'm on it for...
Look forward to hearing back from you!
08-25-2004, 05:08 AM
Welcome to the ICN. You will find a plethora of support, love, and encouragement from everyone who posts here. Congrats on your upcoming wedding. Just know we are here for you.
08-25-2004, 05:18 AM
Hi Santos, welcome to the board :hi:
I've been on Elmiron since 2000 and it has worked well for me. I have found that it takes away the burning but not the spasms.
Congrats on the wedding! : D
08-25-2004, 05:18 AM
Hi Marissa and :welcome: to the ICN! I'm sorry to hear you have IC, but I'm glad you found us. As for the Atarax, I take 25 mg at bedtime. How long were you on it? I ask because it took me about 2 weeks to get used to it... during those two weeks I also had a hard time getting up in the morning and found I was quite sleepy during the day. However, after the 2 week "adjustment period" I found it a lot easier to deal with and now I can get up okay. :)
As for Elmiron, I've been on that for almost 6 months now and think it is beginning to work... my frequency/urgency is better, although I still have quite a bit of pain at times. I'm hoping that as I continue to use it, it will help that too.
Ditropan didn't really work for me. It made me retain urine, and so I had to stop taking it.
Good luck, and congratulations on your wedding. :)
08-25-2004, 05:19 AM
:hi: Marissa Welcome to the boards. I am sorry to hear that you have IC:( I have found out that I had IC just last week. It took me 8 years to get diagonosed. All the other Dr.s treated me for UTI's and told me the pain was all in my head. I have just started taking Elmiron 100mgs three times a day and Elavil 50mg at bedtime. I take Lorcet Plus for pain every four to six hours as needed. So far I can't tell if the Elmiron is working as my Dr. told me it will take a while before it helps. I sure have been sleeping like a rock at night though from the Elavil :lmao:
Hey CONGRATS on your upcoming wedding. I know you are excited and probally nervous a little about it as well. I must say that if you only have the invations and limos left to plan for your wedding you are the queen of planning :bow: It took me 10 months to get mine all together. Ken and I will be married two years in October. Sorry I'm a little long winded today just wanted to welcome you to the ICN Family.
08-25-2004, 05:51 AM
Hi and welcome to the boards Marissa, you'll find them to be of great help and congrats on your wedding.. :woohoo: I am also engaged, but no date has been set yet. I'm waiting till we get my IC under control. I'm scared I will have a major flare on my wedding date knowing my luck!
Anyways, I was dx with IC March 2004 but had had problems since August of 2003. It's nice to finally put a name of something that has caused sooooo many problems and find out it's not in your head.
I tried the elmiron but I couldn't tolerate it. I am now going through BCG treatments. I have never taken atarax, but I am on elavil. When I first started taking it, I had a very hard time waking up, but now it's not so bad. Still a little foggy headed till my shower, but it's worth it. As far as the ditropan, I couldn't take it because it caused me sever retention.
I hope all works well with you....one thing you will learn from the boards is everyone's ic is different and meds affect everyone differently.
Welcome again... :grouphug:
08-25-2004, 07:12 AM
:hi: :welcome: Glad you found us...sorry you have IC.
Do check out the Patient Handbook. It is full of great information. You can find it by going to: www.ic-network.com/handbook (http://)
08-25-2004, 08:12 AM
:hi: and :welcome: to the ICN family please take the time to look over www.ic-network.com/handbook i feel that you will find it very useful and helpful.
sending you hugs and prayers
08-25-2004, 10:11 AM
Hello! I expect to be recovering from IC soon. I had the same experience where doctors thought I had a UTI but nothing grew out in a culture, so they thought I was a hypochondriac. Well I got so frustrated that I did my own research. I was convinced that these symptoms were too much like a UTI to not be some form of a bacterial infection even though the doctors said that it wasn't. I found a website that discussed this and on this website a new research study was discussed. It discussed that about 90% of people who have IC actually have gram positive bacteria growing in the bladder and this type can not be found on dry agar plate cultures (the form that is used for UTI's). It can only grow on wet surfaces and so the broth culture method needed to be used. I listed only two places in the US. that do broth cultures. When the culture comes out positive for the gram positive bacteria in IC patients they were put on long-term antibiotics such as doxycycline and augmentin (3months-1year. Re-cultured each month until the bacteria is gone). After that the patients recovered from IC and lived a normal life. So I had my sample over-nighted to one of the labs to have this culture done. When I got my results, low and behold I had two types of gram positive bacteria in my bladder. Strep D Enterococcus and Staphylococcus. This is a new IC study so many doctors do not know about it yet but it seems to be promising. Hope this helps!
08-25-2004, 12:33 PM
:hi: :hi: :welcome: Welcome to the ICN! I found elmiron to help me a lot after being on it for about four months.
http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post. The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem for you.
IC is not normally progressive. After diagnosis and treatmemt start many get better. Only a very few get worse after diagnosis. So it is most likely that you will improve!!
With the help of us it is even more likely :)!!!! Good luck with your treatement!
Good luck in your schooling (one of my favorite subjects!!) and Good luck with your relationship with the love of your life--my hubby is sorta my high school sweet heart...we met each other there. Didn't really start dating till my second semester of college.
I've taken both Ditropan & Elmiron & I'm the opposite of the others who posted here.
I take the Ditropan 5mg at night because my bladder often spasms when I lie down & Ditropan calms it so I can sleep (also with the help of Elavil 20mg).
I couldn't tolerate the Elmiron. It bothered my bladder. From what I've read it does not bother most people's. My bladder's just so special:( Am hoping it will help you!
Wishing you the best...
08-29-2004, 04:33 AM
Thanks to everyone for the input! I really appreciate it. Although this isn't a serious (read fatal) disease, it is a trying one. It tries your patience, your effort level, your moods, your relationships, and your life. I think one thing every person with IC needs is an understanding and patient person. Thank god I found that with my fiance Josh.
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