I need help, I'm scared.

[Tink22]

About two months ago I started having severe allergic reactions to the Tricyclic I am taking for IC. I have been taking this medication for 11 years and never stopped to think that it would start making me very sick.

I am so sick that I can barely function. I tried going off of the medication however I for the 1st time realized just how badly my IC had progressed. On a scale of 1 to 10 my IC pain is well over a 15 and is not bearable at all, and causes me to feel sick to my stomache.

I went to my Urologist, who said there was nothing she could do for me and couldn't even refer me to a pain specialist as she had no idea who to refer me to!

I need to get off of this medication asap, as I have been to the ER three times with the most scary episodes. I almost faint off and on throughout the day, the medication has now induced panic attacks around the clock, my limbs go limp without warning for a time, my vision has gone completely blurry, and a whole host of other things. I cry all of the time because I am so scared.

I am asking, how do I deal with the pain once I am off the tricyclic when it comes? Nobody, meaning doctors will help me! And I've been told a pain doctor is a month out if they will even take my case, and that most of them don't even want to prescribe pain medication.

I am so scared of the pain that is to come! Can anyone help me! I am desperate.

[nanawaggs]

Dear Shamay ~ I certainly don't have much experience with the type of pain you're describing, but offer my prayers that you find a doctor who will offer help.

I'm so sorry you are having such a difficult time.

Prayers,

[kadi]

Hi Shamay,

I don't have any answers, just questions... I hope you will find some ideas to discuss with your doctor. Your situation sounds complex.

1) If your medicine is making you sick due to allergy, is it possible that your bladder is also reacting to this medicine? When I have severe allergic reaction, my IC pain triples or quadruples.

2) Is it possible to try Atarax for your IC? It's a very strong antihistamine, which might be helpful in resolving the allergy symptoms you have, as well as the IC. This antihistamine is often one of the first medicines prescribed for patients with IC.

3) Do you know what ingredient in the bladder instillations caused your allergic reaction to those? If so, is there another formula that might be safe for you?

4) Is there any possibility your reactions could be from something else? A food, environment, anything else?

5) Have you seen an allergist or immune specialist? Had any bloodwork done lately? Wondering if you have another illness going on that could be treated...

6) When you started having trouble with the tricyclic, had anything about it changed? Color? Manufacturer? I got a bad IC burn when I was prescribed pain medicine with red dye in it. But when I changed back to the white tablets, no problem again. My pharmacy special-orders me specific brands of generic medicine that are all-white. My dad recently started having side effects from a medicine he's taken for years - side effects started when his pharmacy changed generic brands.

Just trying to think of what I would ask a doctor...
I am so sorry you're going through this. It has to be maddening and scary. I will keep you in my prayers.

[Tink22]

Thank you Nanawaggs.

[Tink22]

Hi Kadi,

1) No bladder flares, my bladder is actually not very upset at all oddly. *shrug*

2) I tried Hydroxizine and it made my bladder flare worse than it ever has sadly and made me very anxious. I was super bummed as I was really hoping it world work.

3) I'm not sure what caused the reaction to the instill, I did try bupivicane although only once, before this all went sideways, and it seemed fine. I don't know what would happen if I tried more, but am willing to do so.

4) I do not think so, as all of these side effect started occurring after I went back on the medication.

5) I had blood work done at the ER all 3 times and they said everything was normal. *shrug*

6) I am not sure, I hadn't thought to ask. All I know is after my doctor upped my tricyclic to double what it was, things started to happen such as diarrhea, nausea, shakiness and the chills and was not the flu, so I tried to go off of it entirely but couldn't due to pain, and when I went back on it, everything went very sideways.

Thank you so much for all the great questions. It does give me a bunch of things to think about.


I was also told I may have a mild case or beginings of what is called Anti Cholinergic Toxicity which you can get from Tricyclics and antihistamines. I hope this is not the case.

[ICNDonna]

If you have a primary care doctor, I suggest contacting him/her for help in finding help with your pain until you can get in to see a pain specialist. Your PC may be able to recommend someone and help get you an early appointment as well.

Sending healing thoughts,
Donna

[earthlady]

Is there possibly another uro in the Seattle area you can see? Seems there should be a pretty good choice of pain specialists in this area so I am surprised your dr. doesn't know who to refer you to. I have had some really bad reactions from tricyclic meds including induced restless leg syndrome, periodic leg movements, heart palpitations, etc. I have a very toxic reaction to these meds but there are a lot of people who are fine with them. Psychiatrists who do medication management may be of help to you in regard to the tricyclic med although they don't normally deal with pain management, they are very familiar with these types of medications and their reactions and may be able to offer an alternative.

[Mothergoose]

Just my opinion, this dosen't sound like an allergic reaction, a reaction to the meds, but not an allergic reaction.

In the end they both mean the same thing it appears as if you can't tkae this med any more.

I can't believe your gp can't help you with this till you can get into to see a uro.

Good Luck MG

[Tink22]

My Primary Care Physician wont help me, she referred me to the therapist who is perscribing my medication, and she won't believe me that it's the meds.

[KarenAnne]

Shamay, There are other tricyclics you can try that may not cause these debilatating side effects. Also maybe try calling the nearest big teaching hospital in your area (even if you need to drive 1-2 hours), & ask if they have a urologist on staff that specializes in IC. Try finding a uro through this website or the ICA.

Most important, you need a new primary who will listen to you with respect & compassion. Hang in there & best of luck!!

[Tink22]

Hi KarenAnne,

I did try Amitryptiline and had strange side effects from it as well. Both my right arm and leg tingled all day and it caused anxiousness. I am really med sensitive so it's hard to find things that work sadly. It's so frustrating. Thank you for the thoughts.

I really do need to find a new primary, she never want to do much for me.

[Jereme]

Perhaps your symptoms are a coincidence. If you have been on a medication for 11 years it's unlikely you would all of a sudden start having the major side effects you note. You have a diagnosis of anxiety. Anxiety can cause many physical symptoms. Could your symptoms be anxiety related? The mind is a very powerful thing.

[Tink22]

Hi Jereme,

I was fine on the Doxepin until my therapist upped my dose to double what it was. I started having side effects so we downed the dose back to the original amount and I was still having some adverse effects. After that my urologist and I decided to try a few other things and to perhaps try and get me off the Doxepin, however I think the going up and down on the doxepin so many times in a short about of time and throwing a bunch of other medications into the mix that didn't agree with me in between messed up/confused my system.

When I tried to go back on the Doxepin at the original 20mg, that's when everything went sideways.

I hadn't had a panic attack in many years until I went back on the Doxepin after everything. I have hand a bit of anxiousness in the midde of the night off and on and been unable to get back to sleep, but not panic attacks.

I think there is a two fold thing happening, the doxepin is causing some pretty uncomfortable side effects right now, and I have noticed that after I take it at night it wakes me right up even when I am super tired, and I notice that my heart races and pounds even though I am now on Lorazapam and am feeling mellow and relaxed, I am also having horrible mood swings which started after going back on the doxepin and before the Lorazapam. So I think the doxepin is causing some of the anxiety/panic attacks and moodiness and in turn all of the uncomfortable side effects are scaring me and not helping with the anxiety and panic. If that makes sense.

Sorry for the long post.

[JennaS]

Lyrica

I took Elavil for my first few flares and it worked great. Then one day i got a flare and the Elavil made me nuts. Anxiety, horrible mood all day, sweating right after i took it. It was like i was taking a different medication.

Just so you know on my last flare in 2008, my pain was well over a 10. I started taking Lyrica for the pain while my urogyn taught me to self cath and do the installations. As the installations started to work i cut back the Lyrica more and more until i was off. Side effects are just that it makes you sleepy and not an over whelming amount of energy. After about 2 months of daily intallations the pain went from a 10 to about a 3 or 4. Another 2 months of installations and the pain was gone. Went into remission. Got married and had a baby. Just 3 small flares in the last 2 years (i'm in one now) but about 5 days of installations and i'm good again for another 6-12 months.

I've had IC since i was 15 and i'm 37 now, so there is nothing i have not tried. My doc even considered removing my bladder at one point. So ask me anything

[Tink22]

Hi JennaS,

What kind of instillations are you doing? I'd like to try the lyrica or Neurontin at some point perhaps, but I think that will be way down the road after I am long off the Doxepin and emotionally stable.

Thank you so much for responding.

Regards,
Shamay