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    Linda May
    ICN Member

  • Linda May
    replied
    Originally posted by Toby1 View Post
    Question for the group....

    Elavil seems to have been prescribed for just about everyone. For those that no longer take it, was it because it didn't work or was it side effect related? For those that still take it, do you think it really works or is it because your symptoms have calmed(diet adherence)?
    I have never been on elavil, i was on elmiron for a short period it did no good.
    i have dmso once a month so far all is well in that area of my life.

    Sorry to here you have IC but I am glad you found this forum its very helpful to all of us.

    We are all brothers and sisters to this desease no one else truly understand the life changes and pain we go through.

    I hope you have a good uro and that he or she has you on a good treatment plan.

    Leave a comment:

  • Toby1
    ICN Member

  • Toby1
    replied
    Hi Dean,

    Symptoms are similar to yours....urgency(sensation of needing to go to bathroom, not an urgent rush to bathroom.), pain in penis, perineum pain occasionally. First, the urologist said IC, then after following diet with no change, he said it sounded more like chronic prostatitis. Either way, seems like treatment is similar. I've continued following IC diet. Thus far, I flared on mayo and tomatoes. Not sure if that means it's IC though.

    This all started in late November with a stressful time I had. Actually started the same day my stress peaked. The feeling hasn't left since but does get worse with flares which seem to be food and stress induced.

    I haven't seen much effect from the elavil, now at 50mg. I only have sleepiness the first day after dosage change. After, I don't notice any effect, good or bad. Only side effect is muscle twitching in my abdomen, which may be an allergic reaction to the meeds. It started the night after my first dose.

    I go see my urologist in two weeks and plan to ask him about the pelvic floor dysfunction. I've tried to read a little about it online but it's a bit confusing, since most literature is about women issues.

    I'd appreciate any feedback...I was sure the elavil was going to work. Quite frustrated that I haven't noticed any effect after three weeks and following diet.

    Leave a comment:

  • Dean76
    ICN Member

  • Dean76
    replied
    Toby, Can you elaborate on your symtoms. Do the symptoms come and go or are they constant? After trying a host of meds I am now on the route that Sherwood was talking about "pelvic floor therapy" which can help with people with IC. Google it and see if any of the symptoms are related to you. Actually their are some articles here on the ICN that are very good on pelvic floor therapy. I have had IC for 15 years now and the med that helped me the most is hydrocodone but I am on another mission to get to the root of the symtoms instead of just masking. I did take elavil for several years and it did help with sleep, pain, and urgency but sometimes it would cause me to flare as well. I did not feel like myself on elavil and decided to explore other meds. Be careful to not jump up to fast on the elavil.... it can make you feel like a zombie/very tired.

    Leave a comment:

  • bob04951
    ICN Member

  • bob04951
    replied
    Hey Toby,
    Sorry you are having so many problems. Can't help with the Elavil thing, but apparrently it works well for many. If you Google Elavil, it is actually recommended for IC. The correct dose is something between you and your doc. Will tell you that marshmallow root tea is a real soother for my hub, he drinks a pot a day with just a teaspoon of honey, and it really seems to soothe his symptoms. That and Hydroxyzine 50 mg at night have calmed him down. Just got a shipment of 15 lbs of marshmallow root tea! It is a lifesaver for him. Totally understand how you feel like a guinea pig, I think everyone goes through that unless they are really lucky. Wish you the best, and please let everyone know how you are doing. Knowledge is power, and if we keep each other up to date, we will get there. Jill, wife of Bob

    Leave a comment:

  • KatieB
    ICN Member

  • KatieB
    replied
    The elavil really worked for my pain but I had to stop taking it because it made my blood pressure drop really low. I wanted to keep taking it for pain relief but I don't want to pass out every time I stand up

    Leave a comment:

  • Toby1
    ICN Member

  • Toby1
    replied
    Question for the group....

    Elavil seems to have been prescribed for just about everyone. For those that no longer take it, was it because it didn't work or was it side effect related? For those that still take it, do you think it really works or is it because your symptoms have calmed(diet adherence)?

    Leave a comment:

  • Toby1
    ICN Member

  • Toby1
    replied
    Keen,

    Thanks for the reply, actually thanks to everyone for their replies. Had to visit with the P.A. today instead of the urologist. Pain/urgency seem to be getting slightly better but not gone. P.A. Wanted to put me on neurontin but I asked if we could give the elavil a bit more time(I was on 10 mg for one week and then 25 mg for the past two weeks) and possibly increase it. So, he upped me to 50mg and then another visit in two weeks. Hopefully, this helps a bit more. Otherwise, I guess I'll be switched to something else. At this point, I definitely feel like a lab rat. But, I guess it takes time to gets the meds lined out. Sticking with a strict diet seems to prevent major flares. However, stress seems to cause issues for me as well. Actually, stress is what caused my initial IC onset in late November. I'm hoping that it goes away just as quick as it came.

    Leave a comment:

  • Keen
    ICN Member

  • Keen
    replied
    Hi Toby

    I feel your pain. The most importan thing for me is to stick to the IC diet. Also cut out alcohol out completely. Maybe once u get your IC under control you can add some foods back. I'm on 75.g of elavil. Give it about 3 weeks or so. It takes a while to kick in. I'm also taking flomax and it completely eliminated my frequency and urgency. You will get better. I know it doesn't seem like it now, but it will. STICK TO THE DIET

    Leave a comment:

  • 123456
    ICN Member

  • 123456
    replied
    I was up to 75mg of Imipramine for the 1st year of treatment. Has your doc also prescribed Elmiron? That has really been working for me especially after a year of being on it.

    Leave a comment:

  • sherwood
    ICN Member

  • sherwood
    replied
    physical and behavioural therapy

    The benefits of physical and mental therapy can help. Pelvic pain my be muscular and the correct stretching and relaxation is a must. Although the drugs can be helpful now the real healing must come from behavioural changes. Physical therapy, stretching, meditation and mindfulness of everyday living has helped me more than any drug.

    As an example of the pelvic pain, the source may not be from the bladder inflammation. From the website pelvicpainhelp.org the following can be found:

    "INTERNAL PELVIC FLOOR TRIGGER POINTS
    AND WHERE THEY TYPICALLY REFER PAIN AND SENSATION

    Pelvic muscle: levator ani

    Pain and symptoms typically referred by trigger points in the levator ani muscle:

    * TIP OF THE PENIS PAIN (usually found in the anterior portion of the levator ani near to the prostate)
    * PAIN AND DISCOMFOR IN THE LOWER ABDOMEN (anterior lower abdominals) and DISCOMFORT IN THE BLADDER
    * PROSTATE AND URETHRAL PAIN
    * symptoms of FREQUENCY AND URGENCY
    * a feeling of GOLF-BALL-IN-THE-RECTUM DISCOMFORT which usually comes from trigger points in the middle and posterior (back) portion of levator ani muscle"

    Drugs will help relax or dull the pain but will not cure IC. If you are newly diagnosed IC it can be reversed, however, in my experience it was not the drugs that helped but the changes in lifestyle (stop the type A personality stuff). The books "Heal Pelvic Pain" by Amy Stein, "A Headache in the Pelvis" and "Paradoxical Relaxation" by David Wise has helped me. Also, physical therapy instruction on how to do internal stretching. There is much more to do than drug therapy and waiting for them to work on you.

    Sherwood

    Leave a comment:

  • KatieB
    ICN Member

  • KatieB
    replied
    Hi Toby

    Of course, the dose of ami you take has to be decided between you and your doc. But I've seen people take 75 mg and up. I was started on 25 but had to stop due to side effects that weren't related to my bladder. My symptoms are mostly pain but with some urgency/frequency. It really helped my pain almost immediately but I had to stop before I could find out if it helped with the urgency/frequency. I really wanted to keep taking it. Oh well. I think the issue most people run into when they up their dose is really bad sleepiness. I think that's something your body gets used to, but it takes time. If you want to increase it you should talk with your doc.
    Also, ami is one of the first drugs tried for IC. But it is definitely not the only drug. If you look at the first page of the forums and scroll down, there are sections for many other treatments such as elmiron, cystoprotek and many herbal teas and preparations that some people find helpful.
    If I drink something that irritates my bladder I usually know about it in a short amount of time. Usually an hour or two. If I eat something wrong, I'll find out about that the next day (usually).
    Hopefully the ami and diet is what you need and you'll get your dose right soon.

    Leave a comment:

  • Linda May
    ICN Member

  • Linda May
    replied
    to toby

    You might want to ask your uro for more options of treatment. I will have my last dmso and my pain is completely gone now. I just pray that I stay pain free. The uro may put me on a once a month dmso to keep any flares from coming up. I am extremely thankfull that the dmso treatments work for me so far. I hope you find complete relief real soon. Hugs

    Leave a comment:

  • Toby1
    ICN Member

  • Toby1
    replied
    Update...my urologist upped my amitriptyline to 25mg. Been on it for a week....seems to help a bit but the pain/urgency is still there, but less than before. The urologist seems confident that amitriptyline will work and everything I read seems to say that this drug is a "the" drug for ic. Perhaps the dose needs to be upped again...anyone else gone through the process of getting the right dose of amitriptyline? How high can i go?

    Leave a comment:

  • bob04951
    ICN Member

  • bob04951
    replied
    Hello Toby,

    Stick with the diet. It does take a while to get stuff out of your system. You will learn through trial and error. Usually if you eat something "bad" for dinner, you will know by morning for sure.

    Hydroxyzine has been a blessing for many. You might want to talk to your doc about that.

    And yeah, the pain for guys can be penile (my hub says sometimes that there's a knife in there), or that you are peeing out shards of glass. He has a lot of pain in his penis. What a bummer...so sorry, but glad you found this site, you will get a lot of info and support here. Good luck to you, and hang in there. Jill, wife of Bob

    Leave a comment:

  • suzannes
    ICN Member

  • suzannes
    replied
    Hi Toby,
    I've been on elavil (10-20 mg depending on how I am feeling) for 1 year, it has helped both pain and frequency. I've also been on singulair, zantac and atarax for a year, not so sure this has helped . I've also done Physical Therapy which has helped a lot.

    Suzanne

    Leave a comment:

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