Meds & Encouragement

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Hi all,

As some of you know, I have had IC for about 2 years. I started treating with Dr Boaz in December 2013, so I am 4-5 months into treatment. I was still on the medication Elavil when I started treating with Boaz, however I was only taking the smallest dose (10mg). I have tried stopping this medication twice in the past and both times, after about a month, the pain came back (I am basically pain-free whilst on this med but still have frequency, inflammation/pressure and some VV-type symptoms). Since treating with Boaz, I have seen lots of improvement - my frequency has gone down to the point that I can sometimes go 3-4 hours without needing the bathroom - AMAZING! I noticed these improvements even while weaning off the Elavil slowly over the past months. However, I recently went from taking just a quarter of a 10mg tablet of Elavil every 4th or 5th night for several weeks, to completely not taking it for a week or two, and I can now feel pain and frequency creeping back :( I got so scared that I started taking the Elavil again a couple of nights ago. I have e-mailed Boaz and he wants me to make an appointment so we can dicuss this but I really can't afford to make another appointment so I will need to wait until my next one in a week.

Basically, I don't know what to do. I know the meds are only masking the pain but I am so afraid that if I stop taking them I will go back to that non-functional place and it's a very dark and scary place for me - I literally feel traumatised by how non-functional/depressed I was when I first came down with IC and just cannot handle the thought of going back there. It seems like a combination of the diet and meds works well for me, but either alone does not. Has anyone else had this experience with Elavil? Or coming off meds in general?

I am also scared that the fact that Elavil works for me could mean that I have some kind of nerve damage - which totally freaks me out...

I guess I'm just looking for some words of encouragement and some advice because I am feeling like a bit of a hopeless case at the moment...

Sorry to moan and be negative but I really needed to get that out and need some advice.
 

Em xx.
 

clairek's picture
clairek

Hi. I'm the same - had been weaning off effexor but had huge crash in December and now back on full dose.  Sadly these make my bladder worse!! I think it sounds like you were doing really well. Maybe you just need to go a bit slower with coming off them??  I understand the trauma. I've been there, I'm in it.  Love and hugs xx

EmmaK's picture
EmmaK

Thank you so much for all your encouragement - it certainly means a lot to me :)
 

JessicaA's picture
JessicaA

Emma,
I'm so sorry that your pain is coming back while weaning on Elavil. The pain that comes with IC is such a scary feeling. It really brings you to a dark place that scares every part of you inside. Just know that you are not alone and you are going to do this! You will be off the Elavil and your pain will decrease. I think if I had a med to help alot with the pain it would have been really hard for me to get off of it. Stay strong and know that you can do it:) 
Jessica :)

Rachel Ann's picture
Rachel Ann

Emma,
 
I was on a lot of medications when I started treatment, and Elavil was one of them.  I weaned off of everything else first, and left Elavil for last.  I went through a really rough time initially after going off of it, but it has gradually gotten better.
 
I wouldn't worry about the nerve damage part.  I have had those same fears myself, but I have experienced a lot of relief from vv pain.  Our bodies are capable of a lot more healing than western medicine gives it credit for.
 
I understand your fear of going back to that painful place, and you might have to go there temporarily to get to the next level of healing, but maybe not.  I'm sure Boaz will help you make the right decision about this.  
 

EmmaK's picture
EmmaK

Thank you so much for all your support. Lisa - how long did it take for you to start feeling better again? How long have you been in treatment?

Rachel Ann's picture
Rachel Ann

Emma,
 
I will answer your question, but I must give you some of my background before I do because my "feeling better" is probably not going to be the same as yours.  When I started treatment three years ago, I had had IC symptoms for over ten years.  I had been taking Elmiron and Atarax all of those years and was doing pretty well.  Even before full-blown IC symptoms started, I had signs that it was coming, but I ignored them because I had no idea what was coming.
 
As far as what led to my full-blown IC symptoms, I have always had a weakness of stress affecting my bladder, even since I was little.  And I was mis-diagnosed with mitro valve prolapse in my 20's and was given 12-18 antibiotic pills to take all in one day everytime I went to the dentist (this was a common practice at that time, but it is no longer) so that I wouldn't get a fatal infection in my heart through bacteria travelling from the mouth to my heart.  I was also given antibiotics because of the mitro valve prolapse during labor and delivery of my three children.  In all these cases, I was given antibiotics without having any infection present!  When my IC symptoms started, I was given several rounds of antibiotics because the doctors thought I had a stubborn bladder infection.  To top it all off, I had another ultrasound done to see if I actually had mitro valve prolapse, and I don't.
 
So you see, I have a long history of prescription drug use.  If I knew then what I know now, I obviously would have made different decisions.  I just trusted that my doctors knew best.
 
So fast forward in this timeline to one year before I started treatment.  In the summer of 2010, I started experiencing intense vaginal itching and burning.  I went to see my gyno, and he said I probably had a bacterial infection because there was no yeast that he could see.  He did not send a sample to a lab to test it, but he sent me home with antibiotics.  This only made things worse because it wasn't a bacterial infection, it was full-blown vulvodynia.  (I had had mild vulvodynia even before IC symptoms started, but once again, no doctors ever clued in on what might be going on.)  So my gyno gave me estrogen cream and other stuff that didn't help, and then my IC symptoms started getting so much worse.  The Elmiron and Atarax were ineffective at this point.  So I went to see my urologist, and he gave me a bunch of meds to take to get the pain under control, and one of those was Elavil.
 
So when I started treatment with Dr. M, I was on six different medications.  Within nine months of starting treatment, I weaned off of all of them.  I just wanted them out of my body, come what may.  My body went into a tailspin, and it took about 18 months before I had some consistent, more functional days.  But even now, my body needs a ton more unraveling of all of this.  I haven't been able to get past List 1 with food, and I don't wear jeans, and I can't drive myself anywhere because I end up in more pain.  I have not had any pain-free days for four years.  
 
BUT I have gone from constant intense bladder and vaginal pain to having level 3 pain for weeks at a time.  I have gone from having absolutely no sex of any kind to being able to do certain things with my husband (but not intercourse yet).  I have gone from ONLY being able to make my own meals to being able to function more around my house.  I have gone from only being able to lay down and stand up to being able to sit for hours and be relatively comfortable.
 
For me, the above is "feeling better," and I know it will continue to get better even though it is a long road for me.  Emma, you have only had IC for two years (Though two years is too long!  I'm not discounting your pain.)  So I really think that your body will recover much faster after going through the initial painful period of getting off of Elavil.  Alternatively, maybe if you slow the process down even more, you may not have to experience much pain at all.  Even while I was on Elavil, I still had pain, and I know you said you are basically pain-free on it.  It is a powerful drug, even in small amounts.  I never took more than 25 mg at a time.  But because of our imbalances, we are sensitive, and small amounts are all it takes to alter our body chemistry significantly.
 
I hope this helps.  I know it is long-winded, but I needed to give you an explanation because I am one of those complicated cases.  You will get through the transition and to the other side and all will be well.  It's just not an easy process.  But it will happen.
 
 
 
 
 

Mimij67's picture
Mimij67

Lisa you are very generous and compassionate to share your story. Thank you. I hope it helps many readers. xo

If we don't excel at health, the only other option is disease.

Rachel Ann's picture
Rachel Ann

Thanks Mimi.  That means a lot.  I hope it does too.
 
Blessings,