Announcement

***ICNDonna*** · 03-03-2007, 03:35 AM

to the IC Network.

When I'm flaring, I do have painful pressure --- I have often described it as being similar to severe menstrual cramps.

Donna

**turnaround** · 03-03-2007, 05:54 AM

Hey Jamie,
Welcome and I am a runner, too. I have had great success with MSM glucosamie. My chiro recommended it and I have seen good improvement. My issues are knee and back.

I also have horrible pressure. It's the kind of thing that makes me crazy. My doc upped my dosage of Elavil to 25 and that seems to be the magic number. I take it at night about 8:00 and helps me sleep and doesn't give me next day hangover. Hope you find some relief, as it can be so maddening.

**jamie1** · 03-03-2007, 06:23 AM

Thanks to Donna and Turnaround for replying!!

I have tried the higher dosage of Elavil, but it didn't seem help either (and I was a zombie the next day). Maybe you get used to it after a while??? I have also been wondering if the Elavil is to blame for a recent weight gain (right after I started with the med - 2 months ago - I gained 5 lbs, which doesn't sound like alot except I am 5'4 and 108, and I have been that weight forever - with the exeptions of my 2 pregnancies). Also, I am totally famished ALL THE TIME; to the point where it just seems crazy. Have you had similar experiences with Elavil?

My Dr. had me try about 3 or 4 drugs similar to Detrol, which didn't seem to have a positive effect. Maybe I need to try Ditropan, I saw on one of these message boards that it worked for someone. I wonder how long you have to be on the drug to see it's effect?

Again, thanks so much for the replies. Its great talking to others in the same boat - Jamie

**soccermom32** · 03-05-2007, 02:01 PM

Hi! I am new too, just diagnosed last week in fact. I have had only pain and pressure for the past 4 months...no frequency/urgency issues. I always felt like I had a horrible period coming on. I was convinced it was because of a uterine fibroid and simple ovarian cyst....it took a lot of convincing from my pelvic pain specialist that I do in fact have IC. Not to familiar with all the meds...I'm only on Elmiron right now, instillations and an antihistamine.

**humpieumpumkin** · 03-05-2007, 02:05 PM

The second I put my head on that pillow, it feels like there is a brick on my bladder. Its not terribly painful, but it keeps me up! I also have urgency/frequency which isn't responing so far

Good luck, and if you find something that works let us know!

Erika

**jamie1** · 03-06-2007, 09:29 AM

To Erika- We are on the same wavelength, girl! The moment that I fear most during my day is when I lay down for bed. I have the same sensation; like a bowling ball on my bladder. I guess I can block it out during the day by staying so busy. The sensation keeps me up at night. Maddening. We are both on Darvocet - I take that when I can't take the pressure anymore, and that does help me fall asleep, but I hate the hangover the next day.

Have you tried Elavil? My doctor says it it the magic bullet for lots of patients. It can apparently relieve the pressure for some people. (Just not me). I do think it helps me stay asleep once I fall asleep, so I may continue on with it.

My doc also had me try all those Detrol-type drugs to see if that can ease pressure. Still haven't found one I like. He said that they can work on that vice-grip sensation. Again, I still haven't found one - but maybe I havent stayed on them long enough. I don't know if the effect builds up and therefore takes time....so many questions...

Soccer mom, you may want to try the glucosimine w/msm. I have definitely seen an improvement in my symptoms since starting with it about 2 1/2 weeks ago. (I can eat more of the foods that I had banned before I started it. For instance, I have been eating Thin Mints girlscout cookies - yes, the chocolate coated ones - for 3 days now and NO problems!) Try to find Trying2Copes thread about the gluc w/msm, he gave me the idea. I need to send him a note of thanks.

**ngazerro** · 03-06-2007, 09:58 AM

I am new at this also, but I don't have the preasure pain. I have flank pain mainly, and then my back hurts and bladder. I don't have the urge to go all the time even though I only held 600cc when they put me under for my hydro. I thought they were wrong because it hurts in what feels like my kidneys. I have not heard many people say that. I have my started any meds besides percets because he just dx me last week. I meet with the doctor monday.

**humpieumpumkin** · 03-06-2007, 09:58 AM

Thank you for your wonderfull reccomindation Jamie. I will ask my doctor. I dont know if I could take it though, as I am on Wellbutrin? Well anyways, thanks alot!

Erika

**sweetangel2080** · 03-06-2007, 10:11 AM

hi jamie1

the side effects of tiredness could be more as both hydroxyzine and elavil have a sedative action. Some people find these effects dissapear after a few weeks. Others find that taking it early in the evening helps the morning lethargy as by then the med is not circulating in high levels in the bloodstream.
I have a bad case of IC and off work due to it as had that constant pressure and urgency as well as pain and frequency. However, I tried Elavil 10mg in Dec and it didn't help at first but a few weeks later the pressure starting dulling down! Went up to 20mg but made me tired so stopped, but went on it again and this time saw it through. After a week or so, started feeling even better.

I felt tired when I first started it, but kept with it and after 2 weeks or so, the tiredness went (could wake up at 7/8) and so went up to 20mg...and now upped to 30mg to see if that helps even more.

From what I have read (Dr Moldwin's book on IC), elavil seems to stimulate the appetite hence easy weight gain.
i have been on elavil before when younger for migraines at 50mg and had no noticable weight gain or appetite but have noticed the famishing appetite this time round but have just starting eating less sugars as this is what my body is craving and try to have naturasl sugars such as in fruits. I have put on a few pounds and am 5, 4 also and normally around 50kg/100 lbs.

However we are all different, but just wanted to post that even in my case of being housebound due to IC, something simple has helped the constant urge and pressure.

How long have you been on the Elmiron and hydroxyzine?
It can take a good few weeks for the antihistamine to take effect and I have read that it can take up to 3 months.
Elmiron is a medicine that can take a good few weeks or months to take effect -anything from a few months to 6 to a year in some cases but in most within 6 months I think but we are all different.

Hope you feel better and get rid of the pressure symptoms.

**pj77** · 03-07-2007, 07:58 AM

I had pressure too

Pressure was one of my main symptoms too,along with pain/burning. Elmiron has worked for me , and it helped all my symptoms including the pressure. But it did take awhile to work.

**jamie1** · 03-07-2007, 08:47 AM

PJ77 - how long did the Elmiron take to kick in? I am feeling better since I started on it in January. But I think the glucosamine, actually, really made the difference that I've been feeling most recently, though.

Erika - I don't know if you can take Elavil with your Wellbutrin or not. If you are on Wellbutrin for depression, maybe you could talk to your doc about the Elavil, because I think it is an antidepressant in larger doses. Maybe you could try it instead -have it do double duty

Also, my doctor said Atarax was the preferred antihistimine to use. I did some research on it and one of the major doctors in the field of IC posted some online info, and also prefers Atarax. It has qualities that are beneficial to the bladder, over and above mast cell reduction. Plus it makes me sleepy, which I am grateful for at night (I take it with the Elavil at 8:00 pm)

**pj77** · 03-07-2007, 12:13 PM

in answer to your question...

it took about 2 1/2 months to start to kick in and then around 3 to 4 mos I really saw a big difference and then even more improvement after that.

Based on the research and most people's experience, If Elmiron is going to work for you it is probably still too early to tell, if you just started in January sometime.

Good luck, I hope the Elmiron works for you, It has done wonders for me. But not matter what you will find something that works for you.

**Claredale** · 03-08-2007, 12:48 PM

Pressure was definitely one of my main symptoms when my IC started. I too used to fear the idea of going to bed since I knew that my pain would start almost as soon as I would lay down. I would get up and go to the bathroom about every 5 minutes and just dribble, but as soon as I would get back in bed, the urgency was back. There were even times that I would put a chair (like a barstool) in the bathroom with me and put a pillow on it so that I could lay my head down. It has been years since my IC started, and I still have the fear of going to sleep every night. I take several meds that make me pretty much just knock myself out and I still don't get a full night's rest, but the pressure has become better. It helps sometimes to take a hot bath as well as use the heating pad.

Keep taking the elavil, your body will get used to it and it will help you get the sleep you need (hopefully)!

Tracey

.

**humpieumpumkin** · 03-08-2007, 02:30 PM

Thanks for your advice Jamie! Im just scared to death to go off my wellbutrin since its the only thing keeping me going...I dont know if the elavil would work for my depression/anxiety/panic since it took so many different meds to find this one. I guess if it could help the pressure that would help the moods

I'll keep you posted.

Erika

Announcement

Is PRESSURE your major symptom?

Is PRESSURE your major symptom?

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment