Announcement

Collapse
No announcement yet.

Trying Topamax to the mix

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

  • #16
    topamax

    She started me on 25mg for week one. Then bump up to 50mg for week two. Then bump up to 100mg. She just wants me to take it once at night. She told me if I get a rash to stop taking it. She said some people get tingling fingers and toes and around their mouth. She said that usually if a person decides to ditch Topamax, it's b/c they reported memory issues or feeling "fuzzy." And for some people it's a deal breaker. She said all of her other patients are taking it for migraines and that I'm her first patient to take it for neuropathy issues. (I'm not diabetic but my bladder pain is heavily due to nerve damage).
    Lee Ann
    Current Rx Meds:
    Atarax, Ditropan, Elmiron
    Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
    Hooray for babies!
    Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
    Didn't work for me:
    Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
    IC (Mod-Severe) since 1996

    UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).


    My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...

    Comment


    • #17
      LeAnn,
      Thats the way the doctor is starting me out...

      Sharon, The one thing I have noticed is I have not had any burning since I have been on Topomax and I was having burning at least every other day.. I am really excited about this..
      Hugs
      Ronda

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


      Link to Patient Handbook:
      http://www.ic-network.com/handbook/

      Diet Reference Sheet:
      http://www.ic-network.com/diet/icndi...tsheet0909.pdf

      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

      Meds I have Tried:
      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
      Lexapro< Bad reaction to this med!
      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



      ICN 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.

      Comment


      • #18
        cool

        I would love the burning to stop!!!

        I've realized that nuts, especially peanuts, really do cause me to burn.

        I don't know if I was in "denial" or what! It was only until the last three weeks that I honestly felt good enough to tell when I was making it worse. For 4 years I honestly thought diet didn't matter. But I think that is b/c it was hurting so bad that I couldn't tell when it got worse. Now, however, I have good days and I can definitely tell when I get a bad reaction from food.

        But I still burn sometimes and I can't figure out why. I'm hoping Topamax will help w/ it too!
        Lee Ann
        Current Rx Meds:
        Atarax, Ditropan, Elmiron
        Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
        Hooray for babies!
        Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
        Didn't work for me:
        Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
        IC (Mod-Severe) since 1996

        UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).


        My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...

        Comment


        • #19
          LeeAnn,
          I hope it works for you to
          Hugs
          Ronda

          ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


          Link to Patient Handbook:
          http://www.ic-network.com/handbook/

          Diet Reference Sheet:
          http://www.ic-network.com/diet/icndi...tsheet0909.pdf

          Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

          Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

          Meds I have Tried:
          Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
          Lexapro< Bad reaction to this med!
          Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

          Dx With IC in Nov 2006 with Hydro/Cysto
          Hydro/Cysto Caused Bladder to Rupture.

          Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



          ICN 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.

          Comment


          • #20
            how fast

            How fast does Topamax work in regards to pain??? Can anybody tell me? TIA!
            Lee Ann
            Current Rx Meds:
            Atarax, Ditropan, Elmiron
            Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
            Hooray for babies!
            Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
            Didn't work for me:
            Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
            IC (Mod-Severe) since 1996

            UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).


            My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...

            Comment


            • #21
              Anyone know if topamax can cause retention? I couldn't take elavil becuase it made me both insane(!) and caused retention. Haven't tried neurontin, but would be game to try topamax.
              mom_in_ma

              Comment


              • #22
                I was told for total results 2-3 weeks to begin.
                I started to lower my Elavil tonight to wean off of it. Keep you fingers crossed.

                Sharon I will keep you posted. I also learned it is for migraine suffer's. I can't wait to get double duty relief from this med. and hang up the excedrin migrain that gives me flares.

                Comment


                • #23
                  Originally posted by mom_in_ma View Post
                  Anyone know if topamax can cause retention? I couldn't take elavil becuase it made me both insane(!) and caused retention. Haven't tried neurontin, but would be game to try topamax.
                  Oh my gosh I'm so happy you all are trying it!!! I feel like it's a Topamax revolution!!!!

                  Robin, Top is the exact opposite!!! It has diuretic properties! So you lose tons and tons of water. Water from places you didn't know you were storing water! I was storing water around my heart, lungs, diaphragm, etc... and couldn't exercise because of it. I couldn't even climb stairs!

                  I've lost about 50 pounds now since 5/14/07 just on the 50mg dosage!!!! I haven't been able to get my dose raised since the hoopla with my pain meds, which I DID get btw, thanks to all who asked, I so appreciate your concern and love.

                  I'm so excited for all of us. I am so thrilled. Maybe this is the beginning of a cure! I have the burning also, and when I take the Topamax....no burning....no burning at all, thank God!!!!
                  http://www.TheCraftyEwe.etsy.com

                  Comment


                  • #24
                    Originally posted by dancemomof2 View Post
                    I was told for total results 2-3 weeks to begin.
                    I started to lower my Elavil tonight to wean off of it. Keep you fingers crossed.

                    Sharon I will keep you posted. I also learned it is for migraine suffer's. I can't wait to get double duty relief from this med. and hang up the excedrin migrain that gives me flares.

                    It worked first and second day for me, and I had weight loss in the first week, maybe fifteen pounds! :woohoo: Oh, and the first time I took it a couple years ago? I didn't have a headache for two years! And stayed skinny!
                    http://www.TheCraftyEwe.etsy.com

                    Comment


                    • #25
                      Hi everyone,

                      I'm new here but just posted a response to a lady named Jessica about Topamax. I've been on topamax for nearly a year now for severe migraines, was prescribed by my neurologist. I do have IC along with 8 other conditions, this is the first I've heard of top being used for IC though.

                      I would like to share what I know about Top and what my neuro told me. Side effects: Tingling in the hands and feet and other body parts - YES - you do get that and it does get worse as you titrate up to higher doses. This is a common side effect and it can be maddening. There is also some very strange side effects that involve things seeming larger than they are (i.e., your head, hands, feet, teeth, anything really) can seem like its the size of a house very suddenly. If you are prone to panic attacks - this rare side effect will send you into one (I still get it but can talk myself out of it when it happens). "Fuzzy headed feeling" - you forget simple things, every day things - very common for quite some time but I've found this has diminished over time being on the medication.

                      As for the weight loss - yes some people do lose weight on this medicine. However - some dont. If you stop taking this medication and you lose weight on it, then decide to go back on it again, you will not necessarily lose weight again. My neuro told me its a one time/one shot deal if its going to work for weight AND that because of its weight loss properties, you should be weighed in and blood tests done every few months because it messes with certain things in your blood and you can be more prone to infection (or something....I know its something about bloodwork...I'll have to ask him again..all I know is I have to go back every 3 months for blood work because he has to check my levels of something because of this pill). I know my doctor also checks my weight - if I drop any further than a certain number, he will pull me off of the Topamax faster than you can say my name regardless if its working for my migraines or not because it is dangerous to my health. I HAVE to continually remind myself to eat and drink - drinking is something you must do - tons and tons of water because Top causes kidney stones - so having IC is bad enough, drinking more water is even worse because a small bladder and peeing 50 times a day already is a problem. Try adding in another 3 bottles of water with Top and you spend 24/7 in the bathroom to avoid kidney stones.

                      So while there are benefits - there are greater risks associated with Topamax. If you are taking this medication just to lose weight - I'd consider another alternative. While some nutritionists and dieticians DO use this for morbidly obese patients (again, this was told to me by my neurologist), it is not recommended for weight loss in patients that have 50 lbs or less to lose due to its side effects.

                      I wish everyone luck on it - just remember to drink and please read up on EVERY side effect before you go asking to try this med, especially if you have panic attacks, it can be absolutely horrible.

                      Brittney

                      Comment


                      • #26
                        Thanks Britteny I had read all of that before I started it.

                        Comment


                        • #27
                          LeeAnn- ( and anyone else who is on both Topamax and Neurontin):
                          Are your doctors weaning you off of Neurontin? I was told by my doctors and pharmaist(?) that you shouldn't take both of these medications together- apparently they interact with each other. Might want to ask them about it.
                          Anyway, I had to get off the Neurontin.
                          Mary

                          Comment


                          • #28
                            Hi, I just started today on topamax i`m on 25mg twice a day for 2weeks then I go to 50 twice a day. Will it help with the pain on only 25mg? i sure hope so. Some of my pain is caused by nerves thats why my doc put me on this med. I am also on cymbalta 60 mg and he didn,t say any thing about getting off of it. I have lots of burning in my urethra and sharp pain in my libia and a hunnner ulcer in my bladder, caused by my ic. I`v had ic for 10 years. thank you . Violet

                            Comment


                            • #29
                              I think it's a misnomer that people think we have an actually smaller bladder so it would be harder to drink lots and lots of water. But when you're an IC'er you find that you actually benefit from drinking tons and tons of water, which is the opposite of what you would expect. So actually, IC'ers are set to handle Topomax more than others and probably less likely to have kidney stones since we drink more to help the flares and all.

                              I hadn't heard anything about the panic attacks. Topamax is actually a drug given for stress relief, anxiety attack relief, it's a mood stabilizer, and it's now being approved for treatment of withdrawal for alcohol and drugs due to it's anxiety relief properties. So Brittany, I don't know if that side effect is simply one that you experienced or what, because I've read all the literature for about five years, and I've never seen that one.

                              I have however seen that if you stop this med, you won't get your second shot at losing the weight. So if you want to enjoy that particular benefit, don't stop the med the first time around.
                              However...This IS my third time around on this drug and I've actually enjoyed the most weight loss this time around. Not that anyone should try that, but this time I've lost 40 pounds in 3 weeks. But I needed to because I was retaining water everywhere, including unsafe places.

                              I've had the tingling as well, and I've been on the med three times. I've been on it at 25 mg the first time, 150mg the second time, and 50mg this time. I've been able to tolerate all three times, and actually this time it hasn't been bad at all.
                              http://www.TheCraftyEwe.etsy.com

                              Comment


                              • #30
                                Sharon it works 50% of the time. There is alot drug reactions with this med compare to Neurontin. Plus I am using is for nerve pain not IC pain.

                                Deborah Bush
                                I have IC, the IBS, Heartburn, High bloodpressure,thyrod problems, depression and clorties pain.

                                Comment

                                Working...
                                X