Getting help from the psychiatrist

[George]

I thought I would post and let everyone know that I am seeing a psychiatrist to help deal with this IC and my relationship breakdown. It's to get professional help and he has me on an antidepressant. I have been seeing him for 2 weeks. He wants to learn more about IC and wants me to consider the option of starting Elmiron. I have an old script for Elmiron from my urologist, but the urologist was not very enthusiastic about it. But it seems that this psychiatrist wants me to at least consider taking it. He said that there are options for my pain and wants me to consider a drug called Neurontin which he said that he would prescribe if I decided to take it.

I think I need to start all over again with trying to manage this disease. I've really only been made worse by the urologists that I have seen. Both urologists have only wanted to do surgical procedures which were either unnecessary or caused terrible complications. Not one of them mentioned anything about diet, reducing stress, or any support or counselling. I'm not exactly on the up but I have no other choice but to try and get some sort of control over this disease. This psychiatrist is willing to learn about IC and is concerned about my sleep and the urethral and bladder pain. I am going to print out some information from the patient handbook and take it in to him.

I am staying at a friend's place at the moment because I really just don't want to be on my own. I need to change my living arrangements after the relationship breakup. I need to figure what I would be doing with my life if I didn't have this chronic disease.

Anyway I just thought I would post that I am moving forward just a little bit after the terrible depression I was in.

Sincerely,

George

[SharonA]

Good for you, George. :) :) :)

[Kara29]

George,

I am so happy you are getting help form a professional. Neurontin can be a great drug for some people. I take mine as an antidepressant since I could not take any of the others due to my bladder not tolerating them. I take 3,600 mg a of Nuerontin. 800mg 4 times a day. It's for pain as well as for depression. It's not FDA approved for the use of depression yet but I hope some day it is. It's the only drug that makes me feel like ever waking up. It's good to wipe the slate clean and start over with this disease sometimes. Write down everything you take and how you react to it. I know sometimes I take a med and 20 minutes later I will feel better or worse, depends on the med but that is how you can rule out what is working for you and what isn't. Keep a daily log of what youi take, when you take it, and if there is any sort of reaction good or bad to it. That way you can show the doctor that there is a cause and effect relationship to this food or this med or this activity. It's best to not start out on too many meds at one time because it makes it hard to see what is working for you and what isn't working. IC is a disease that requires the help of many professionals. Urologists, Primary Care Doctors, Therapists, Psychiatrists, sometimes Neurologists, and GastroIntestinal Dotors. It's a disease that needs a whole village to take care of. It's hard to lean on just one doctor for all of your needs, so don't be afraid to still use all of the other resources you have around you.

I'm so glad to hear that you are seeing a Psychiatrist. It sounds like they are already helping you! Moving to a new place or environment or even changing the decor and arrangement of where you currently live and change your life in so many ways for the better after a breakup or loss.

I think about you a lot George, even though we don't really converse. I do care and want to see you get better emotionally and physically. I'm glad to hear some good news today!

Sincerely,

Kara Lynn

[winediva]

Good luck George!
Sometimes you need to put yourself first, and although it can be hard and very draining breaking up it sounds like you need some taking-care-of yourself-time. I have been struggling with my boyfriend about the whole IC business - he just doesn't understand all the strange things that go together with IC. I hope you find some results and it sounds very positive that the doctor is going to read up on IC - hooray for an open mind.

[ICLori]

Good luck, George! Like you, the treatments I got from uros either didn't help or made me worse.

But I have great hope for a new drug I will be trying soon, called Cyclosporine-A. Based on the studies, it is the most effective drug (by far) for IC out there. If you are curious about it, do a search on the boards for it. It is quickly becoming the standard treatment for IC now - people are coming to the boards every day almost, saying their uro is starting them on this....it holds great promise. In the studies, 75% or better of the patients got complete remission from this drug (no bladder pain whatsoever) so it really is worth looking into.

Blessings,
Lori

P.S. This is the study (published this last December) which really convinced me that I should try CyA. It was a study comparing CyA with Elmiron.

@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@
Cyclosporine A and pentosan polysulfate sodium for the treatment of interstitial cystitis: a randomized comparative study.

Sairanen J, Tammela TL, Leppilahti M, Multanen M, Paananen I, Lehtoranta K, Ruutu M.

Department of Urology, Helsinki University Hospital, 00029 HUS, Helsinki, Finland. jukka.sairanen@hus.fi

PURPOSE: In a previous retrospective analysis, cyclosporine A (CyA) was highly efficient in treating patients with interstitial cystitis. A prospective randomized study with this immunosuppressive agent was warranted. We compared CyA to pentosan polysulfate sodium (PPS) in patients with interstitial cystitis.

MATERIALS AND METHODS: A total of 64 patients with interstitial cystitis meeting the National Institute of Diabetes and Digestive and Kidney Diseases criteria were enrolled in a randomized prospective study. Patients were randomized in a 1:1 ratio to 1.5 mg/kg CyA twice daily (27 women, 5 men) or 100 mg PPS 3 times daily (26 women, 6 men) for a period of 6 months. The primary end point was daily micturition frequency, and secondary end points were mean and maximal voided volume, number of nocturia episodes, O'Leary-Sant symptom and problem indexes, visual analogue scale for pain, and subjective global response assessment.

RESULTS: CyA was superior to PPS in all clinical outcome parameters measured at 6 months. Micturition frequency in 24 hours was significantly reduced in the CyA arm compared to the PPS arm (-6.7 +/- 4.7 vs -2.0 +/- 5.1 times). The clinical response rate (according to global response assessment) was 75% for CyA compared to 19% for PPS (p <0.001). Although there were more adverse events in the CyA arm than in the PPS arm, 29 patients completed the 6-month followup in both groups.

CONCLUSIONS: CyA is more effective than PPS in interstitial cystitis.
Publication Types:
Randomized Controlled Trial

[armslee]

George-
Thank you for posting this thread. I myself am dealing with a great deal of depression right now from my symptoms and I know that it is really difficult to take that step to treatment.

Kara is right in what she says about it taking a village to treat us. And I think that sometimes it takes someone to push and nudge us into seeking treatment for all our symptoms, including our emotional ones.

I hope and pray that you find some medication to help you on your journey.

Wendi

[ICNDonna]

I'm so very glad things are beginning to turn around for you. I encourage you to give elmiron a try --- it can take six months or more to become effective, but some ICers report they are in remission taking it. You might ask your psychiatrist if he knows of a urologist he can recommend. Sometimes our doctors are our best resource in finding specialists.

I do understand how difficult a break-up can be. I was there many years ago when I was divorced from my first husband. Four years after my divorce, I met and married a wonderful man --- we celebrated our 34th anniversary last month.

Sending encouraging hugs,
Donna

[traceann]

George I am so very happy to hear that things are turning around for you and it sounds like you have definitely taken the bull by the horns!! WAY TO GO!!! You are making positive changes in your life for YOU and only you, when you do find someone new, they are going to be so very lucky to have such a great catch as yourself!! ;)

Keep us posted!!!

HUGS!!!!!

[Imustpee]

George! Good luck..:kiss: ....I hope you feel better very soon...we are all here for you anytime you need us...:grouphug:

[poetgirl]

Lots of healing prayers and hugs to you, George! One of the most important aspects of managing this disease is taking control of your own health and being your own best advocate. I did a lot of research and presented treatment options to my doctors, which ended up helping me more if I just went with what they told me.

:grouphug: :pray:

[Mrs. Burschman]

George,

It's great that you seem to have found such a helpful psychiatrist! Sometimes the most useful doctors for IC (or any other chronic problem) aren't even the specialists!

I'd give Elmiron a try. I did. It didn't help, but a lot of people get a lot of relief from it, so you could be one of the lucky ones!

We're all so glad you're doing a little bit better now!

Amy (Mrs. B) :bunny:

[Baba Yaga]

George, it's bad that you were given so few options up to now -- BUT!!! this means that you still have many options available to you now that might work!

I had a uro like yours, alll he offered was DMSO instillations. Almost EVERYTHING OF SIGNIFICANCE that I have been trying and learning from has been from this forum, and a little from the ICHelp website.

It was here that I first read about RemedyFind, Vesicare, Enablex, the concept of a "Pain Management" clinic or doctor, ICDiet, Prelief, Cystoprotek, Ultram, Pyridium, the controversy about DMSO, Hydroxizine/antihistamines, heating pads for IC, almond milk, marshmallow root, and even red raspberry leaf tea for cramps, and Botox for TMJ.

And you know what? It's a good thing you are single now, because the best place for you to be spending your time right now will be on line, re-reading the newbie handbook, and reviewing all the sections of the forum that you stand to benefit from.

There is also a male chronic pelvic pain website you might want to visit.

Remember that it is a loooooong journey to figure out what works best for you, both for IC and depression. I hope you can hook yourself up with some talk-therapy support too.

I see you only heading back upward from here, slowly and with inevitable backslides here and there, but given all that you were doing without up to now, you are in a good position to improve, provided you keep trying. :)

[Babs RN]

George,
It is good to hear from you. I have not been on the boards much, but feel free to PM me if you need me. I am glad you have found a source of support, Lord knows you deserve it. You are a strong man and will survive this. You are always in my thoughts and prayers.

Hugs,
Barb:kiss: :grouphug:

[George]

I just want to say thanks so much to EVERYONE for your posts of support and suggestions. The support is really encouraging me. I am trying to slow my mind down and look for options. It is just very small steps at a time. I am very much considering taking Elmiron to start with. I just have to get my head around the side effects and spend some time reading the boards about people's experience with it. Thank you also to Lori for also telling us about Cyclosporine. Just to have some more medical options is another positive thing.

This is not an easy road. I never thought that I had a chronic disease, but I now have to find ways to manage this. In all my stupidity I thought that doctors just made you better. I never thought that I would have to be a participant in all of this. I know how stupid that must sound. I just thought the doctor knew best. But the ironic thing is that I haven't been getting any better with what they have to offer. The last time I saw the urologist I had to ask for a script for Elmiron and was reluctantly told "I'll give you the script but it doesn't work". It has only been my new psychiatrist who is encouraging me to at least try it. He even said if I can't find the old script he would write me one for Elmiron!

I have to start again and spend time going through the patient handbook and I think I need to document in a journal or something about my symptoms, what makes things worse etc.

There is just so much to be done in terms of sorting out my living arrangement and getting rid of stuff from the relationship. Staying at my friend's place has at least removed me from a painful situation and provided much needed company. I have to stay at my own place tonight and I'm not really looking forward to that but I have to face that. I guess there is no way to escape the emotional pain of a broken relationship and all the goes with that.

Well I just wanted to reply to everyone and give you all another bit of an update. Thanks to all for such wonderful support.

Sincerely,

George

[MarthaB]

:) George, I'm so glad you are getting help to deal with your depression, i'm sure it will help a lot! it's good to hear you are considering Elmiron, it could work for you, you will never know if you don't try, right?
Good luck!:grouphug:

[marsi4]

Hi George,

I would recommend you ask your doctor to refer you to a pain clinic. If you are in a lot of pain you need to have your pain controlled. If you have a lot of pain Elmiron will not remove your pain, at least that was my experience and if it does help at all it will take at least 6 months. In the meantime you need to have your pain managed to be able to function and reduce your suffering. The anti-depresssnts are many times necessary when dealing with chronic pain. I would also recommend trying dmso instills. They helped me somewhat and reduced my pain and pressure. If you feel pressure which is caused from inflammation dmso can help. Cyclosporine A looks somewhat promising and I am considering trying it because I have a lot of pain and are having a hard time managing it even with pain meds. Hope you find a treatment that will help you in better managing your ic. Good luck

Marsi4

[traceann]

I am so glad to see that you are doing this all systematically - that's wonderful! Helps keep things from being too overwhelming, which is good - as that's usually a cause of discouragement. So keep on taking it one step at a time!!! I had really great results with the Elmiron - it took it's time as it's reported to do, but it was worth it. I later developed some GI side effects and have weaned off of it. Still doing well! I just started taking the Algonot Plus that I read about here on the site, it's a natural approach - but want a bit of insurance that I am doing good by my bladder, lol. So, I say yes yes yes, give it a shot! ;)

So happy to hear you sounding so positive in your own life - that's fabulous!!! And nice to hear you so realistic about it as well, that it is a long road, not easy sometimes but you will overcome!! :) And no, it doesn't sound silly to realize how much work we have to put into our own healthcare, we are taught from an early age that the doctor knows best and that they and they alone "heal" us and "make us better".

Hugs!!!!!
:)

[sandramac]

:flower: :kiss: George im so glad you are getting the support and help! Ive been watching your posts and praying for you! So glad you have your friend for support and the thearpist for help.I understand more than you think.My hubby has just suffered a depression meltdown from stress from work,hes on sick leave and see's his 1st therpist tomorrow.Its a horrible thing to have to deal with and on top having the IC as well! And also a horrible thing to watch someone you love struggle with. Best of luck to you.I will be thinking of you.please keep us posted how you are doing.Hugs Sandra:grouphug: :cat: