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  • #1

    Really scared now

    It's 3:30 am. We have a flight at 8 am. I've been up all night with frequency and pain. Today, it's been exactly a month since this started. I'm very scared--don't know how I'm going to survive this vacation & really wishing I had cancelled our plans when this all started.

    But, I've had days when I feel pretty normal. The freq./pain seems to rear itself at night. It's like if I can't get to sleep quickly, then I'm going to be up for hours. Does this happen to anyone else?? This happened Sunday night, then I had two good nights, and tonight has been a disaster. I finally broke down and took 3 pyridium's that I had been saving for our trip.

    I've been following the diet pretty closely since this began. I started Cystoprotek last week. In between flights today, I'm going to find a urologist.

    What else can I do?

    I'm so scared that I'm going to be disabled. Or never be able to travel again.
    March 2011-Symptoms began
    May 2011-Tentative diagnosis by OB/GYN
    October 2011-Confirmed diagnosis -- IC/PFD

    Current treatments:
    Elmiron- 300 mg (Began 12/11)
    Hydroxyzine- 50-75 mg (Began 7/11)
    Tizabidine- 2mg 3xTID, if needed (Began 12/11)
    IC Diet-Began 5/11
    Pelvic Floor Therapy-Began 12/11

    Current Supplements:
    Cystoprotek
    Magnesium
    Fish Oil
    Biotin
    Tags: None
    • #2
      Hi, BiblioGrrL -
      Oh, how I can relate to the nighttime horrors. Just these last 2 weeks have brought back memories of so many months of misery after having about 3 very good months of doing quite well.

      I'm sure the anxiety of the flight isn't helping you relax any and possibly increasing your symptoms.

      I was so frustrated and fearful during the period of time when my symptoms were totally out of control. With the help of my wonderful Uro/Gyn, PA and staff, gradually I saw such improvement that I have had what I would call normal days and able to do normal activities....the things I cried about missing so much a year ago.

      I think you're doing great to try the diet, find a uro who is familiar with IC and with patience, you will find the right combination of treatments to help you. It's so frightening when you have so many questions and the unknown of a diagnosis.

      Have you been able to explore around the ICN for suggestions from others yet? There is such a wealth of information here to help with all your fears and questions.

      Blessings for a wonderful trip. Just take it as easy as you can. Keep us posted how you're doing.
      Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

      11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
      8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
      8/2010 Surg gallbladder
      TREATMENTS (updated 4/15)
      IC Diet since 8/2009 (Able to vary 4/15)
      Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
      Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
      Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
      *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
      Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
      PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

        Comment

        • #3
          Hi Ginger,

          Yes, this network is definitely a wealth of information. What a strange, frustrating problem IC is. Thanks so much for your kind words. I'm trying to calm down a bit. Sleep deprivation has really taken it's toll; however, the 10 pounds that I've lost this month sure make my bathing suit fit better! I've tried to keep a semi-humorous attitude about what's going on, but it was impossible to do that tonight.

          Thanks again,
          Tina
          March 2011-Symptoms began
          May 2011-Tentative diagnosis by OB/GYN
          October 2011-Confirmed diagnosis -- IC/PFD

          Current treatments:
          Elmiron- 300 mg (Began 12/11)
          Hydroxyzine- 50-75 mg (Began 7/11)
          Tizabidine- 2mg 3xTID, if needed (Began 12/11)
          IC Diet-Began 5/11
          Pelvic Floor Therapy-Began 12/11

          Current Supplements:
          Cystoprotek
          Magnesium
          Fish Oil
          Biotin

            Comment

            • #4
              By now I think probably you are already on your way; I hope you are able to relax and have a great vacation. Be sure to stick with the diet and drink enough water. You may want to try drinking bottled spring water with no additives, at least while you're away from home.

              Warm hugs,
              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

                • #5
                  If your doc didn't give you any Xanax or Valium to help with the anxiety, I would suggest picking up some Benedryl. Not only does it help with any irritation, but it will also relax you. They gave this to me in the hospital once when I was flaring really badly and it helped somewhat. Take 50mg and you'll probably be able to sleep. While you are on the trip, go to a Walmart and pick up some stick on heating pads. Get the small square ones that they sell individually, they stick much better than the rest. Also, I suggest spending $20 on a cheap heating pad for at night to help loosen those muscles and help you relax. Drink minimal amounts of water while traveling and rest in your room if you need to.
                  Your Friend,
                  Michelle

                  Diagnosed: 10/16/09

                  Elmiron, 100mg 2x per day
                  Imipramine, 10 mg per day
                  Diazepam 10 mg for sleep
                  Zyrtec
                  Zovia, birth control (ongoing-no periods)
                  Probiotics
                  Hydrocodone, 2 pills a day (at any time of day)

                    Comment

                    • #6
                      Night time was always the worst for me also. I still can't understand how I could be fine all day while I was moving around but then get so bad when I would lay down at night to sleep. Still doesn't make any sense to me. Somehow there must be more pressure on the bladder when lying down. The thin adhesive therma care heat wraps that are used for menstrual cramps are really convenient to use under clothing. You can't even tell they are there.

                        Comment

                        • #7
                          An Update

                          Well, I made it back from my trip, and we had a great time. I've actually slept just fine since we left. I did discover after my last posting (and right before we left for the airport) that I am apparently allergic to pyridium. I had red splotches all over for about two days.

                          But, yeah. I SLEPT! I even drank some wine (but, otherwise, managed to stick to the diet pretty faithfully). I've been taking Cystoprotek since the 2nd week this all began (it's a little over a month now), and using Prelief quite a bit.

                          But, honestly, I have no idea whether I have IC or not? Did I have bacteria that just didn't show up?--to me, this seems unlikely. I'm not sure what I should do at this point. Wait and see or go on to the urologist?

                          Would mild IC react like this? Is it possible that the Cystoprotek is helping so soon?
                          March 2011-Symptoms began
                          May 2011-Tentative diagnosis by OB/GYN
                          October 2011-Confirmed diagnosis -- IC/PFD

                          Current treatments:
                          Elmiron- 300 mg (Began 12/11)
                          Hydroxyzine- 50-75 mg (Began 7/11)
                          Tizabidine- 2mg 3xTID, if needed (Began 12/11)
                          IC Diet-Began 5/11
                          Pelvic Floor Therapy-Began 12/11

                          Current Supplements:
                          Cystoprotek
                          Magnesium
                          Fish Oil
                          Biotin

                            Comment

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