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Trying Topamax to the mix

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  • #61
    leelee...I am so very happy to hear that the Cymbalta is helping you with that horrible Clitoral pain you have been having. :woohoo: I sure hope that continues.

    Shopping??? Did someone mention shopping? I'll get my hat... ;-)

    Where I can be found most days.

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    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.


    • #62
      Deborah: thats good to here, about the no reaction or side effects with the Neurontin and Topamax. Like I said everyone told me I couldn't be on both at the same time. They told me why, but of course, its been 3 years now, so I don't remember!!


      • #63
        D. Bush, 2 or 3 weeks to get from 50 to 100 thats great , I will call my Dr when it time for my pris refill. I hope it helps with my pain like it helps you.Ronda I take 60mg of Cymbata already and it doe't help. I guess It could be wourse without it , but I need it much bettter. you also take alavil don't you? So far I doen"t have dry hands either. Thank you Violet


        • #64
          I'm finding that the only things that really make me flare are additives and preservatives (I took a sample of my daughters Funyuns or whatever they are, two bites and that was all it took, and a few strawberries with spray or something on them.)


          • #65

            Sorry its taken me so long to respond, I've been down for the count these past few weeks with all my conditions.

            The rare side effect of causing panic attacks by Topamax, while rare as stated, does happen even though the med is used in bi-polar patients. Having a med sensitivity as I do, I"m extremely sensitive to so many meds and usually end up having the weird reactions (terrific for me ). Its kind of like when I was on Neurontin and Gabitril - although they are anti-seizure medications and used for epilepsy - they are used for other conditions. While on these meds - they caused me to actually have massive seizures, another rare side effect, so I had to stop taking them for my IC and fibromyalgia.

            As for the tingling that others are asking about - sometimes it goes away, and sometimes it doesnt. Eventually you get used to it. Some people stop taking Top because the tingling drives them nuts, others learn to cope with it because the benefits outweigh the tingling. It's all up to the individual person really. I did have retention in the beginning as well - you may have to decrease your doseage and definately talk to your doctor about it; titrating up as slowly as you can. You may not need a high dose of Topamax to benefit from it, 25 mg daily over a long period of time may do the trick, again if you are taking it primarily for weight loss, then you need to find another way / method. If your goal is for neuropathic pain relief, migraine relief - then slow and steady is the means.

            I hope this helps all of those on it. Its really helped me with migraines, which is why I was put on it to begin with, not for my IC or any other condition I have.



            • #66
              Here is all the info about Topamax including side effects that I have - including what is NOT in the pamphlet from the pharmacy's:

              Topamax is an anti-epileptic drug, prescribed to control both the mild attacks known as partial seizures and the severe tonic-clonic convulsions known as grand mal seizures.

              Topamax can depress the central nervous system. Be extremely cautious about combining it with alcohol, sedatives, tranquilizers, and other central nervous system depressants.

              More common side effects may include: abdominal pain, abnormal coordination, abnormal vision, agitation, anxiety, hallucinations, headache, hearing difficulties, hot flushes, hyperactivity, impotence, increased sweating, involuntary muscle movement, irritable bladder, joint pain, kidney stones, loss of balance, loss of consciousness, low sex drive, mood swings, confusion, constipation, depression, difficulty with concentration, difficulty with memory, dizziness, menstrual problems, mood problems, nausea, nervousness, muscle ache, muscle tension, muscle weakness, nosebleeds, painful or difficult urination, personality problems, appetite loss, back pain, breast pain, chest pain, double vision, drowsiness, fatigue, flu-like symptoms, indigestion, language problems, leg pain, loss of coordination, nose inflammation, rash, sinusitis, slowing of movements, sore throat, speech problems, tingling or burning sensations, tremors, weakness, weight loss.

              Less common side effects may include: Abnormal gait, abnormal menstrual bleeding, acne, aggressiveness, allergy, apathy, bladder infection, changes in taste, bloody urine, body odor, decreased awareness, decreased mobility, decreased sensitivity, diarrhea, digestive inflammation, dry mouth, exaggerated sense of well being, eye pain, feelings of illness, feelings of unreality, fever, fluid retention, frequent urination, gas, gum inflammation, hair loss, pinkeye, ringing in the ears, sensitivity to touch, severe itching, shivers, shortness of breath, sleeplessness, suicidal tendencies, swelling, upper respiratory infection, urinary infection, urinary incontinence, vaginal infection, vomiting, weight gain.
              Topamax NDA 20-505/S-022 & NDA 20-844/S-019 FDA Text dated 08/10/04 from U. S. Food and Drug Administration

              Cognitive/Neuropsychiatric Adverse Events Adverse events most often associated with the use of TOPAMAX® were related to the central nervous system and were observed in both the epilepsy and migraine populations. In adults, the most frequent of these can be classified into three general categories : 1) Cognitive-related dysfunction (e.g. confusion, psychomotor slowing, difficulty with concentration/attention, difficulty with memory, speech or language problems, particularly word- finding difficulties); 2) Psychiatric/ behavioral disturbances (e.g. depression or mood problems); and 3) Somnolence or fatigue.

              Kidney Stones: An explanation for the association of TOPAMAX® and kidney stones may lie in the fact that topiramate is a carbonic anhydrase inhibitor. Carbonic anhydrase inhibitors, e.g., acetazolamide or dichlorphenamide, promote stone formation by reducing urinary citrate excretion and by increasing urinary pH.

              Paresthesia: Paresthesia (usually tingling of the extremities), an effect associated with the use of other carbonic anhydrase inhibitors, appears to be a common effect of TOPAMAX®. Paresthesia was more frequently reported in the migraine prophylaxis trials versus the adjunctive therapy trials in epilepsy.

              Information for Patients: Patients taking TOPAMAX® should be told to seek immediate medical attention if they experience blurred vision or periorbital pain. Patients, especially pediatric patients, treated with TOPAMAX® should be monitored closely for evidence of decreased sweating and increased body temperature, especially in hot weather.

              Patients should be warned about the potential for somnolence, dizziness, confusion, and difficulty concentrating and advised not to drive or operate machinery.

              Hope this helps all those with questions and can answer questions posted.


              • #67
                D. Bush, Hi, I took 50 mg this morning then a few hrs later I took another 50mg the pain was just terrible . I feel better now but I have lots of frequency. I just took an enablex for frequency I hope it helps. Did you ever have that problem? I guess I'm going to have to give up my one cup of coffee in the morning. How long before the 100mg really stared to work fore you? I know everyone is diffidence. I am also a severe case because i have a hunner ulcer. thank you violet


                • #68
                  Something that people need to realize is that alot of these side effects that are included are also the ones that are experienced by the groups that were given placebo. It's best to study up on these things for oneself and not just take the opinions of other people, myself included.

                  Also, people who are hyper-sensitive to drugs, also can be hyper-sensitive to suggestion as well. I'm not saying anyone is here, just that it can happen. I know many people who when they hear of a side effect, they get that side effect before the drug has even taken effect. So please, use caution in all that you hear, read, and experience.


                  • #69
                    Violet I do not have any problems with frequency? It takes about 2 to 3 weeks before you now any difference. I hope it works for you.

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


                    • #70
                      I was wondering if anyone is taking the topamax with elavil? My doc said since I only take 20mg of elavil it would be fine to continue it along with the topamax. The drug info sheet from the pharmacy says not to take it with elavil so I don't know what to do. I sure hope it helps me. I had to stop the elmiron because of hairloss issues. I was doing quite well on it. -Vicki
                      Blessings and Hope

                      Current Meds.
                      OFF MY MEDS
                      Vivelle Dot: .10 changed every 72 hours
                      Compoounded Progesterone 25mg/night

                      Current Supplements
                      Hydroeye: 2 pills AM

                      1995: Endometriosis
                      1998: Interstitial Cystitis
                      2006: Bladder Endometriosis, Total Hysterectomy and Bowel Re-Section
                      2008: Removal of Ovarian Remnant and Endometrial Cyst That was Obstructing Ureter
                      2012: Laparoscopic Removal of Adhesions and Staples


                      • #71
                        I believe there are some still on elavil with Topamax maybe they will chime in and let you know, but im sure your dr would not have gave you both if he did not think it was safe..


                        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:

                        Diet Reference Sheet:

                        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.


                        • #72
                          I am staying on the 20 mg of Elavil for now with the Topamax, I tried to wean to 10mg and my symptoms started to increase so I am staying on the 20 mg for now where I was doing super at better then I have felt in a long time.


                          • #73
                            I hope that the topamox helps you. Have a nice weekend.

                            Deborah Bush
                            Last edited by Sarojini; 06-15-2007, 10:46 AM. Reason: To prevent an argument on the boards.
                            I have IC, the IBS, Heartburn, High bloodpressure,thyrod problems, depression and clorties pain.


                            • #74
                              Interstim is not for pain control and that flares are still going to happen and that is why I am trying the Topamax for. I have had total success with Interstim.
                              Last edited by Sarojini; 06-15-2007, 10:47 AM.


                              • #75
                                I asked my doctor about taking this med for my pain and flairs and he said it was an anti-psychotic, and did not think that I should take it.
                                Everyone please note the first thing to know about the stim is that is not at all for pain. I still have bladder pain and flairs.
                                'The will of God will never take you where the Grace of God will not protect you.'