Over the 12 years of having this dreadful disease I have tried amitriptyline
a few times without results but my doctor wanted to try it just one more time
before we pull out the big guns. I'm on my third week of taking it and now up
to 30mg a night. My doctor wants me all the way up to 50mg so that means at least another 2 whole weeks like this!
The side effects of this drug are so obnoxious! I am starving
all the time, I am gaining weight like crazy and my mouth is dryer than the hot
winds of Africa!
The worst part is the pure starvation and desperation for crap
food. I seriously feel like I've been lost as sea surviving on dried kelp and
raw fish that I caught using a strand of my hair and a hook I made out of a toe
nail.
You think I am joking… but seriously! Every hour or so it's like
my homecoming to land and I feed myself with a desperation previously only
known to animals.
Oh and I'm not craving healthy thing... No buddy. Ice cream and
chips are the only things that will satisfy this inner starved beast.
Fortunately, or unfortunately depending on how you look at, I
eat our stock in both the day we get it so I go for days moping around gnawing
on saltines and sucking hard candies to appease my desperation until some one takes pity on me and goes to the store.
I have struggled with my weight the last few years and I just got it
close to a place that I was happy with and now this?!? In the 3 weeks of
being on this dreaded drug I've gained 8 whole pounds! What! I didn’t even
know that was possible!
My doctor said if it doesn't start working soon and the bad
outweighs (pun totally intended) the good to just go ahead and taper off of it. But she was also the
one that says to "not give in to the cravings" so what does she
know?! You try fighting back a starved inner beast when all it wants is a mere puffy cheeto or two! (It's the whole bag lets face it.)
Here's the thing, I'd rather be as big as a barge and be pain
free then svelte and in misery but I don't want to add issues to my health and add poundage to my
beautifully striking figure for nothing. (ha.)
The other issue is it makes my mouth so dry!! Like the whole lost at sea thing again! No matter how much water I drink its just so
dry! Plus that goes against my infamous theory of drinkativity, (it’s a thing). I dehydrate myself every day. Not entirely
intentional but I have this woebegone theory that if I don't drink water I
won't have to pee as often. I would rather pee a few times and have it hurt
worse from the concentrated urine then dozens of times and have it only hurt
moderately. So I deprive myself of water... You don't need to tell me how horrible that is... I've heard it from every one and in every way.
Anyway, every morning I wake up hoping that this is the day it
starts to help but if I don't see results soon its adios muchacho!!
Okay I've got to go unashamedly gorge myself with ice cream
now... Thanks for reading!
Hi, I just found your blog and as a fellow IC'er I must say you make me feel better. I just finished reading your post in 2012 about the motorcycle ride that ended in "swimming to reduce swelling," and for a moment seeing it as a normal thing to do. I live in California, and last weekend decided to swim the wharf at Santa Cruz. The day was 47 degrees, the water a warm 49. My reasoning was that I could workout and be icing down my pundendal nerve that just joined the inflammation party in my crotch. I had a fall, and that inflamed pretty much my entire pelvic floor (yes, I have PFD too) and every related nerve. I think I am normal and just happen to have these issues (diseases?) and then I realize that normal people that fall and hurt themselves rest, they don't swim 1.3 miles in 49 degree water even if offered cash and free lunch! I love your writing, and well on my way to reading every post you have up! Just know you are helping another, and that no matter how bad the pain I can always use a good laugh and perspective from someone who really knows how this shit feels.
ReplyDeletetake care,
Leslie Funk, San Jose
Thank you so much for your kind words!! It makes me feel so good to know that this outlet for my pain and frustrating is not only helping me but others too!!!
DeleteI'm sorry you have to deal with every day! If you ever just need a friend to talk to, I'm here! Find me on Facebook, Deni Jovanovich is my name! Hope you're pain eases so you can enjoy your Saturday!
PS: I was recently told by the head of San Francisco Kaiser Hospital's Pelvic Pain Program that I drink too much water (4-6 bottles a day) and to stop it! I couldn't believe it, I thought I was supposed to be drinking as much as I could to keep my urine dilute and my bladder well flushed out to decrease my pain. I guess this is a new theory? She also told me that bladder distention and the photos no longer are diagnostic for IC. IC and PFD are like a migrain, no visable symptoms does not rule out severe disease and thus severe pain. So we all have a very bad headache in our bladder and pelvis!
ReplyDeleteL.F.
Dr. G eh? That's wackadoodle. I don't see how drink 4 to six bottles of water a day is too much.... and, you're right, diluting water to reduce any irritants in the urine just makes sense and any long term IC patient knows this. Yes, bladder distention hasn't been required for a a diagnosis in several years.... it's based more on your symptoms, etc. etc.
DeleteDeni,
ReplyDeleteI got your name right this time..lol I love your blog, keep it up. I was on amitryptilyne for many years and gained about 50 lbs. I was already overweigh at the time and I hit my all time high of 276. It wasn't doing much for me so I stopped (tappered off) about 6 years ago. I know exactly what you mean about starving all the time. It was terrible. I'm now down to 196 and have about another 30 to go. I'm in the middle of a bad flare right now so exercise is out for a while. Actually today I want to find a sharp object and cut out my bladder. Please keep up the blogging, I like your style. I hope you have a good day1 Deanna M
Oh girl!! You were brave to stay on it so long!! I have been on it for one month and I am so done! The side effects are atrociousness, especially when it doesn't help. AT ALL! So I have 2 doses left and then I'm done.
DeleteWAY TO GO for losing all the weight. I am so scared to find out how much I have gained and then to go through the obnoxious process of losing the weight I so quickly gained!
I have such a hard time exercising I'm either in a flare or feeling good so I don't want to flare. What do you do to exercise?
Thanks for reading and commenting!! Hope you're feeling good!
I love what you said about how you'd rather be larger and pain free than svelte and in pain. Keen insight my IC Sister and I'm adding your blog to my IC watch list! :::wide grin:::: You might find it featured in our e-newsletter too! The more voices speaking out about IC the better!
ReplyDeleteIt sounds like you are experiencing the same symptoms from Elavil that I did... and I had to stop after a month or so because it started giving me a very irregular heart beat as well. The dry mouth sucks... and I also developed chronic dry eye. I've used the Biotene dry mouth products, the Dr. Thayers Mouth spray (which works really well)... but what works best is the Xylishield drymouth gum that I got from my dentist. Any xylitol based gums are sugar free and help stimulate saliva production. You might want to check those out. We have a few in our shop...
Jill. I am so star struck! Haha, that sounds so lame but really! I have had IC for 12 years, since I was 13 and I have always looked to the IC Network any time I had questions or was trying a new treatment or whatever. So now having you reading my blog and commenting is kind of surreal.
DeleteThank you for your kind comments about my blog, it means more than I can even say.
Thank you so much for the tips about the gum!! I don't know why I hadn't thought of that. I wake up without a drip in my mouth and spend the first few minutes licking my chops like a hungry dog. I only have 2 days left of the meds and then I'm donezo. Definitely not worth it, I didn't notice an ounce of help anyway!
Thanks again... really! Okay I'll stop gushing over you now ha! :0)
I hate elavil due to the weight gain. I am already depressed over IC, so weight gain in leaps and bounds, making my IC belly even bigger, my pants tighter, is not cool! I thank you for your blog.
ReplyDeleteIt sucks huh?!? I've eaten more junk in the last month than in the last 5 years combined! I'm so glad other people understand and I'm not the only chub! ;o) Thanks for reading and commenting!
Delete