Announcement

Collapse
No announcement yet.

Another newby

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Another newby

    I just recently found your website and after 15 yrs or so of suffering have finally found out exactly what I have and diagnosed myself. Have just started on the Bladder Control and the Prelief. Luckily, my pain is not all that bad. My main concern is the continual bath room visits all night which leads to sleepy days (I'm writting this message at 3:12a.m.) I am currently taking Melanite 12mg before bed time. Does not stop the bath room visits but some times helps me get back to sleep quickly. Has anyone had any luck with other over the counter drugs regarding sleep deprivation? The testimonals are very touching. When I read the one that said, "when I go to bed every nite, my husband would say, 'good night' I would say, 'good bye'" it was all I could do to hold back the tears. I could feel the honesty and sencerity of her post. I pray she is doing better now. Just want to say thank you for your site. I will continue to read and learn. I'm hoping to probably start on one of the prescription drugs mentioned on this site. Neither my urologist or my neurologist has diagnosed me yet but I know that this is what I have. Thanks again.

  • #2
    Welcome! hi There are a lot of really touching stories here, aren't there? I am glad you found us so you can be a part of the support system.

    Where are you at with your uro in terms of diagnosis? Is he or she actively trying to rule out other things? It would be nice if you could try some of the prescription meds available - they have given me my life back. Maybe you could read up in the Patient Handbook here and then bring some of the info to your doctors.

    Hope to see you around. kissing
    Kim

    Diagnosed August 2001

    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

    I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

    *****************************

    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

    Comment


    • #3
      I'd also like to welcome you to the IC Network. You'll find the Patient Handbook at http://www.ic-network.com./handbook/

      I also think pursuing a diagnosis is a good option. Once you know exactly what you are dealing with, it becomes easier.

      I take some over the counter remedies, but I always discuss them with my doctor, since I am also on prescriptions.

      Sending warm healing thoughts,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
      [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

      Comment


      • #4
        Hey VM, I have been seeing my URO now for about 3 yrs off and on. I would go to him and he would always check my urine first, (same reply, everything looks OK)then throw another pill at me. I would try it a while, no response, or effects of the pill would be worse than my IC, so I would stop and then just put up with it for several months. Eventually, I would find my way back to the URO. I was talking with my sister one day and she asked me if I had seen a Neuro. Saw the neuro & he went and spoke with my uro, then decided to schedule a urodynamics test. Am currently waiting to have this done. I will suggest then to him about the possibility of me having IC. Regarding your question: my uro has never brought up this at all. I have been on just about every prostrate & bladder drup for bed wetting etc you could name. Flomax, Detrol, etc, etc, etc, It was getting so bad one time I thought about sleeping pills and the uro actually prescribed trazadone but I did not want to get hooked on them. Just recently started sominex and it did help my sleep a little. Then after listening to some doctors on a talk radio show I found Melanite. Having as good a response with it as I did with the sominex. As I said earlier, during the day going to the bathroom does not really bother me that much. I am lucky in that my job allows me to do this. My main problem is sleep deprivation. Some days, as you know, are better than others. Thanks for your reply.

        Comment


        • #5
          WELCOME TO THE BOARDS!!!!!!!!!!!!!!

          I am so sorry you have suffered so long without an answer to why. I am so happy you found us. Someitmes we need to be active in our own health if we want answers, Congrats!! I think you did it!

          I would hope you don't have IC but I know it is better to know what you have than to have symptoms without answers.

          I went 10 years without a diagnosis.....15, 10, 7 years of wrong treatments has to stop. Sorry you had to go through it too.

          Anyway...welcome and now you have the wonderful support of ICN.

          grouphug Best Wishes, hi
          Faith, Hope, and Love,
          Katrina


          I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

          IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
          or find me on facebook http://www.facebook.com/kat671?ref=profile
          Be the Miracle! & Pay it Forward!

          ca[email protected] please contact me...I am here to help!

          Comment


          • #6
            Hi and welcome to the boards. I suggest that you find another uro who is willing to treat you and do tests to find out that you have ic or not. Hang in there. keep posting.
            Hang in there , There is hope.
            There is hope. Prayer works.

            Love, Debbie

            Comment


            • #7
              Hello and welcome to the boards. Hope that you can soon find a uro, and get a diagnosis, and then know what you are dealing with, and be able to get some help, and much needed sleep. I am glad that you found the IC network, a very helpful and supportive web site, lots of information, and caring people to support you while you are dealing with everyday life. Keep us posted as to how you doing, and lots of good wishes in getting those extra zzzzz, that are much needed. Take care Iris. hi
              Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.

              Comment


              • #8
                ~ Welcome ~
                Sue C.~
                [email protected]

                Comment


                • #9
                  Hi, I am also a new use to this site, although I have been lucky enough to browse occasionly through a friend's computer,but unfortantly for the last 2yrs we have been living 1hr away for any family & friends so have not had any computer for a long time. Thank goodness I was at last able to get my own. And thankfully I am now heading back to Mildura ( which is where I live in Australia) to be closer to my family,which are just what I need for those days.I have had IC for 14yrs & took 7 of those to find out what it was. I don't have a uro close to my town & have to travel about7-8hrs to see a DR in Melbourne,however i didn,t particually like him so I am in search of another uro, which here in Australia is not easy to find someone in the know about IC. If anyone out there from Australia has any suggestions that would be great.Alot of the terms,tests & mediations I see mentioned are quite forgein to me so I will be trying hard to understand those, as im alwys looking for new meds to try. At the moment I,m taking DitropanXL, Elmirion(big help) Minirim nasal spray,Pain meds & sleeping tabs each night which I hate releying on but when you have a very active 17mth old soon you need to get your rest.I have found the Minirim spray ( it actually helps slow down the production of urine when taken at night) has been such a help it has taken my once 15-30trips a night down to app 5 trips. I still find the actual trying to get to sleep thing a real pain sometimes, although once I do get to sleep things have been alot better.Apart from tonight as it,s 2.30am & still trying to sleep.
                  Anyway just thought I would introduce myself arouns the site, and a big big thank-you to all those involved in the making of this great place for all of us to share our thoughts & ideas, it's amazing how much better you feel being able to talk to others in the same situation, as i have said I don't know of anyone near me with IC so it's hard for friends & family to truly understand just what this is like even though the are greatly supportive.
                  thanks again Andrea scream

                  Comment


                  • #10
                    Hi Aspencad!

                    Just wanted to add my welcome! grouphug

                    Hugs,
                    Alexa
                    My story of healing and hope http://www.ic-network.com/patientstories/alexa.html

                    Comment


                    • #11
                      Hi and welcome. hi Everyone here is great. Stay with us and keep posting. We all like to encourage each other. Hugs,

                      Melissa
                      "Life is 10% what happens to you and 90% how you react to it"

                      Read my story at: http://www.ic-network.com/patientstories/melissa.html

                      Comment

                      Working...
                      X