Success with Elavil....

[RAS6]

Just thought I'd share my experience for those of you who are scared to try Elavil due to the fatigue side affects.
My original Urologist kept telling me that I shouldn't try Elavil b/c it would make me too tired. He didn't explain that I could start with small doses, and take it at night. Out of desperation and fear for my sanity due to horrible flares and endless symptoms including getting up 8+ times at night to go potty, I finally saw my GP and started Elavil. While it does make me tired, I found ways to deal with it and now that it has been a few weeks the sleepiness is going away.
I started on 10mgs at night and am on 30 mgs now. I take it by 8:00, no later than 9:00 and usually go to bed at 10:00 and no longer feel tired or "hung over" in the mornings (and I get up at 6:30 like most Mom's with school aged kids!) I had to play around with what time I took it and get to bed a little earlier than usual, but it is worth it to me. :)
While it doesn't make my pain and symptoms completely dissapear and I still flare (am having a stress related flare right now) I am able to sleep without getting up 8 times to go to the bathroom. When I do get up it is only once or twice a night and I have no problems falling back asleep anymore. I still do not have IC under control, at least to where I would like it to be, but I am seeing a new Doctor and taking higher doses of Elmiron while still on the diet. Elavil has really helped me sleep at night and I am no longer taking painkillers around the clock- just sparingly as needed and that has been only a few times a week now.
I just wanted to share my positive experience with Elavil for others who are hearing negative things.
Again, everybody is different and your experiences may be different. Some people are just too groggy to function while on Elavil. I just felt it was important for me to make that decision myself by trying it and I wanted to let everyone know what a difference this has made for me just in two weeks. I am no longer so depressed that I cry all the time and I finally can get some sleep at night! :woohoo:
-Rachel

[ihurttoo]

Rachael, I am so happy that you are having some success with Elavil! I hear it really helps alot of ICers. I take it too, but I am on alot of other meds, so it is kinda hard for me distinguish what is doing what. But, I am really happy you have found something to help you! Thanks for sharing! Hugs, Amy

[RAS6]

Thanks Amy! I have to say that your story really inspires me, plus I love the picture of you and your son! I have two little girls (2 and 6) and I have days that I just wonder if I can keep doing this. Being sick is so hard! I saw all the conditions you have and all the meds you have to take and stopped my pitty party. I thought 6 meds a days was rough! Seeing how strong and supportive you are has really given me hope on rough days.
Quick question, was is difficult to get a licocane jelly prescription? I have been avioding intercourse with my husband alot because I have so much vaginal pain. While taking pain meds before hand and ditropan to stop bladder spasms has helped, I still am very sore during and afterwards. I tried Astroglide, but without alot of sucess. I saw you used the lidocane jelly and thought I'd ask. My Doctors tend to not bring up options, I have to ask questions and give them my ideas and suggestions to get results.
Thanks!
-Rachel

[ihurttoo]

Dear Rachael,

Thank you for your kind words! I have had a rough morning, but you made me smile and feel better!

I do have alot going on with my health, but I am lucky that for the most part pain in my bladder is my only symptom that I have every single day. The other things kind of come and go in spurts. I am fortuante in that respect. When I look at the boards and see others worse off than me, it has the same effect on me that it does on you....I am grateful that things arent worse than they are.

Regarding the Lidocaine, it is very easy to get. It isnt like asking for a narcotic or something. No one will mind giving you this! I would ask your Gyn first, and he/she will probobly give it to you. But on that 1% chance he/she doesnt, then your GP or Uro will. Dont feel funny asking for this. Again, it isnt at all like asking for something heavy duty!

When you get it, try experimenting a bit with it. It is a jelly, and it tends to dry out a bit too quickly during sex for me, so I mix it with Astroglide. This seems to work well for me.

I do want to ask you some things though...I hope this isnt too personal, if it is feel free not to answer, or to pm me if you dont want to discuss this on the boards, but when you say sex hurts, where EXACTLY does it hurt? I am asking for several reasons. First, if it hurts all over, then that is most likely vulvadynia. But if it hurts primarily at the entry, (like when you first insert a tampon). Or if it hurts right outside the entry and is exquisitly painful, then it could be vulvar vestibulitis, (VV). To diagnose VV, your gyno can do what is called The Q-tip test. (I know, real high-tech sounding, huh? LOL!) But, they take a q-tip and touch around the area at the entry, (the vulva). If you dont have this, you wont feel anything and wont care where they touch with the Q-tip. However, if you have vulvar vestibulitis (VV), you will wanna come off that table and kick him in the nether region, it will hurt THAT Bad!! If you are d/xed with VV, there are several meds that can help, such as Elavil, Cymbalta and other antidepressants. Also, the anticonvulsants work well for neuropathic pain (nerve pain). These include, Lyrica, Keppra, and Neurontin. I take Cymbalta and Neurontin. (They work well for me for other things, but didnt help me much there, although they DO help alot of sufferers.
There are also several creams such as hormone creams and Elavil can even be compounded into a cream. These things have also helped several, along with the Lidocaine that you asked about. If Lidocaine doesnt help, then try Marcaine. It is a bit stronger and lasts a bit longer. Some people respond to one and not the other. Meds are so funny that way, so keep trying until you come up with something.

Most Drs are not very good at explaining the options. (I know none of mine have been!) So, it is important to do your own research to be your own advocate, after all, no one knows your body better than you do, and no one cares more about the outcome of this than you do!)

Unfortunately, I never really had alot of luck with the meds for VV, so I had surgery for it in 2002. It is called a vulvar vestibulectomy. They removed the damagaed tissue in my vuvlar area. It worked for me and I no longer have pain with sex unless my vulvadynia is acting up. But the entry pain is gone! When I do have a vuvladynia flare, that is when I use the Lidocaine and Astroglide mixed during sex.

If you (or anyone else reading this) have any questions feel free to ask. There is nothing to personal to ask me. If you feel uncomfortable or embarrassed talking about this on the boards, feel free to pm me, or if you prefer, I can give you my number.

Again, I dont know if you have vestibulitis or not, but I wanted to tell you about that, just in case.

I hope you find something to help you soon! And dont worry, the Dr will give you the Lidocaine without a thought! HAve a good day! Hugs, Amy

P.S. I LOVE your name!! Back when I was pregnant, Rachael was one of the names I had picked out if we had a girl!

[RAS6]

Amy,
I did PM you about some of the details of the pain I have, mainly b/c it was a long response! From what you described, I don't think it is VV I am dealing with, but I really appreciate your telling me about it. Hopefully someone else will benefit from reading it as well!
Thats funny what you said about my name! My parents are very religious, three of us kids have bible names (myself included) and the other three have family names. It is funny b/c when I was pregnant with my youngest daughter, my husband and I really couldn't decide on a boys name we LOVED, you know? I guess it's a good thing we have two girls! :lmao: The only name we both agreed on was Samuel, and now my husband's brother is planning on naming his baby that if they have a boy!
-Rachel

[bunnykinb]

Rachel,

Besides frequency, did Elavil help with pelvic pain and burning? I have a prescription for 10 mg of Elavil that I haven't filled yet. I switch from burning to pelvic pain. I use the restroom every hour during the day and get up 1-2 times at night which is fabulous compared to many who get up at night lots. I am already so very tired from this IC. Maybe I should start out with 5 mg of Elavil to see how I am with the tiredness?

Thanks,

[ICNDonna]

My husband takes 10 mg for arthritis pain. He didn't have any fatigue symptoms at all even when he started it.

Donna

[ihurttoo]

Rachel,

Besides frequency, did Elavil help with pelvic pain and burning? I have a prescription for 10 mg of Elavil that I haven't filled yet. I switch from burning to pelvic pain. I use the restroom every hour during the day and get up 1-2 times at night which is fabulous compared to many who get up at night lots. I am already so very tired from this IC. Maybe I should start out with 5 mg of Elavil to see how I am with the tiredness?

Thanks,
Bunnykinb,

Just wanted to let you know that even though you were d/xed with mild IC, you still may have moderate or severe Painful Bladder Syndrome. Your pain is vaild, and should be addresseed by your Dr., regardless of how you IC is technically catagorized. Please discuss this with him/her and ask for some help with it.

I know you have been on the boards a while and are probobly familar (sp?) with the various pain meds availble, whether they be narcotics, antidepressants, anti-convulsants, or whatever, but if you need help on how to start this conversation, please let us know...we will help you. There is no need for you to suffer just b/c of they told you your case is mild.

Also, regarding your exhaustion, there are meds that can help you greatly with this too. I didnt realize this until about 2 months ago, when I was talking to my Dr about the extreme levels of my fatgue. He then prescribed a med called Provigil, and it has helped considerably. Prior to taking it, all I wanted to do was sleep! And even after sleeping for days, I was STILL exhausted. (Alot of my meds cause drowsiness, which is a huge contribuiting factor.) But, now that I am on this med, that is no longer a problem. You might want to ask your Dr. about it or for something to help you with this. You may only need it for a few months until your body adjusts to the sedating effects of certain meds.

Hope this helps and hope you get some relief soon!

Hugs,
Amy

[marymove]

I have had wonderful results with Elavil - only 10 mg. at night and I have only been getting up 2 x and I have been sleeping, pain free. HUGE. I still have pain during the day, so uro said to take one in morning one at night. I, too am afraid of sleepiness, but next to the pain I have, I think I'll take the yawns.

[RAS6]

Bunnyknb,
Amy gave you great advice and is a bit more knowledgable than I am about IC.
For me personally the Elavil helps with my pelvic pain, but nothing, even a combo of Elavil, Elmiron, over the counter pain relievers and prescription drugs makes it go away completely on really bad days. That's part of the reason why I personally wanted an anti-depressent. The constant pain is like having toothache that lasts a year and it can really get to me on days I flare! Again this is just me. I have horrible burning even on the Elavil so I just started taking Uricet K (I see you are on that already) The other drugs that help with bladder pain or burning either do nothing for me or make me throw up violently (proced, pyridium). For me the biggest relief from Elavil is being able to sleep at night without horrible pain and peeing 8+ times and the constant crying has stopped as well. Different pateints might have different results. I started the Elavil with just 10 MG's at night and I wasn't tired at all in the morning. It may be worth a try, perhaps it could help you not get up at all at night? Who knows?
-Rachel

[RAS6]

Marymove,
I agree with you. A little fatigue is worth helping the pain go away. After a few weeks though the tiredness may go away or not be as severe.
My Mom who is mentally ill and peer advocate said the people on Elavil for severe depression take 100's of mg's a day and that Elavil at that level is usally the cause of extreme sleepiness. But everyone is different and I personally understand why people get nervous about side effects of prescription drugs. With the exception of not losing any hair on Elmiron (thank God!) I experience side affects from EVERYTHING else I am on. I have just had to learn tricks to handle it (taking Elavil before a certain hour, taking Elmiron with a snack and out of the capsuls, etc.)
-Rachel

[bunnykinb]

I am no longer at mild IC, my last and current uro moved me up to moderate IC. I just got my Elavil filled today and will take it tonight. I was up at midnight until 2 am with a lot of pelvic pain. I take 600 mg of motrin but with days of pelvic pain, it hasn't helped much. I had to take 1 vicadin. I was so sleepy when my alarm rang at 5:30 am. Here it is already 6:46 pm and I am just feeling awake.

I need to go in for a physical. I will tell him about my tiredness. I wasn't quite sure if it was because of depression from being in pain with IC. I have set it aside since I have been getting my DMSO so often. I also have knee problems that started earlier this year. I was having a difficult time with therapy because of my bladder. I have to go in to another doctor for that. But, the physical from my primary care doctor is needed along with my dental. Wow, all these doctors.

[kelly24]

Hi,

I have been taking 25mg of Elavil nightly for the past two months and so far it has really helped. I also have been taking 4 mg of Detrol LA every day.

Everything was going okay up until about 4 days ago when I found myself being incredibly dizzy when trying to walk. It isn't vertigo but it isn't just lightheadedness, I feel completely unstable on my feet and like I am about to fall down. It is really troubling and scary.

I called my doctor and she automatically said "oh it's just the detrol having an effect with the Elavil, stop taking the Detrol and you'll feel better". I don't feel better yet but that was only yesterday. Has anyone has this extreme disequilibrium with Elavil and possibly mixed with Detrol? ANd why would it take 2 months to start happening?

[ihurttoo]

I agree with the others that if accomodations can be made to avoid the fatigue, or if it is only mild to moderate, then medication for it shouldnt be used. I must have misunderstood things in thinking you had severe fatigue all the time anyway, even without meds. Sorry for the confusion there! But, with all my meds, my fatigue IS severe, so this med has been a life-saver for me, but I wouldnt want to encourage someone else to take something if there was any way at all it could be avoided. Hope this clears up my postion! Hugs, Amy

P.S. Rachael, I got your other PM. Sorry I am so late getting back to you this time, things have been a bit crazy around here the past few days, and I wanted to wait and respond when I had time to give it my full attn, taking time with my responses so I could give you all of the info I can. But, I will be getting back to you by tomorrow. So, please dont think I have forgotten or that I didnt get it or something! I just like to be thorough in posts and pms and stuff, (which you can probobly tell by the length of most of my posts! LOL!) Thanks for understanding! Hugs, Amy

[bunnykinb]

Amy,

I appreciate your comment about the medicine for fatigue. I am tired all the time. I get 7 hours of sleep with 2 times to get up to the restroom, but I wake up in the morning feeling tired still. I wrote down my questions to ask the primary care doctor when I go in for my pap, that I am tired a lot, I still have tightness in my throat on and off, and my hips hurt after I wake up from sleeping ever since I had my son 6 years ago.

Anyway, I took 5 mg of Elavil last night at 8:30 pm and was out like a light by 9:00 pm. I didn't wake up to use the restroom until 4:00 am. I don't know if it was from not sleeping well the prior night or if it was the Elavil.

The pharmacist said the side effects of Elavil were mainly dry mouth and difficulty urinating. Well, I normally use the restroom every hour or less, the last time I went was 4:00 pm and here it is 5:30 pm and I still don't have to go. Hmm.

[bunnykinb]

Amy,

I think I might have chronic fatigue syndrome even though no doctor has diagnosed it.