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I have talked to my URO today several times LOL and I will be his first to try Topamax and wean off the Elavil. I do suffer from blinding migraines so maybe I will get relief for both. Can't wait to see how it does.
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Good Luck Leslie...
I sure hope it helps.. I have migraines to so I am hoping it will help with IC pain and the migraines.. Keep me informed please..
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.
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me too
I'll be adding Topamax to the mix after I see my doctor this week. I'm excited to try it!!
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...
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Just took the first dose. I hope I don't feel yucky in the morning.Comment
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I haven't noticed any side effects from topamax except loss of appetite. That hasn't been too bad since I've needed to lose weight. I've lost 12 lbs in 6 weeks. I'm not so sure it has helped with the sciatica, but I'm pleased with the weight loss.Comment
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Tomorrow I am going to ask my Doc. if I can have topamax. i feel funny asking for my own med. How did you ask yours. WHAT STRENCE DID HE GIVE YOU? pLEASE LET ME KNOW SO I CAN TELL MY dR.Comment
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I just bluntly ask to try it. He gave me 50 mg once daily. I feel a little slugglish but not bad today,Comment
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Leslie,
For some reason its working differant with me.. I have so much energy.. Are you still on the Elavil though? Also I thinkthe Topomax is finally kicking in good because the pain is down to about a 4 from a 10 so thats a plus the night time frequency is getting better but still not like it was with the elavil, Going back to dr friday to up the dose to 50mg.. The weight is still coming off:woohoo: ..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.
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Usually you start with 50mg and work your way up, or that is the way most doctors do. I am on 150 mg at night. (I know a lot of people take it 50mg 3 times a day) I take it for balance as I have pockets of fluid in my brain so it helps with that. Been on it for almost 2 years. Lost about 40 lbs. I weigh around 130 now, haven't weigh this less since my first child was born 23 years ago!!Comment
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I am still on the Elavil, I am weanin goff of it slowly. I hope that this will stop the sluggish feeling. It is not really bad just blahhhhhComment
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excited!
Yippee, I went to the doctor today and she prescribed me Topamax!!! I'm mostly excited b/c I want to lose weight. I had gained weight on Elavil (ugh)---about 30 pounds. Lost some of it, but not all of it on Weight Watchers.
But thennnn I got a horrible flare two months ago and I have gained twenty more pounds!!! In only two months. Ugh!!! So frustrating! I think part of it is swelling. My fingers are so swollen I can't get my wedding ring on.
I'm not sure how much is swelling and how much is weight. Funny thing is---the same clothes still fit me just fine! And I'm only 5'2 so twently pounds should make me go up some sizes, I would think. Anyway, I mostly wanted to go on Topamax for the weight loss benefits but of course I acted like I needed it for pain. Which that's not a lie b/c I still have major bladder pain after being in a car----so it makes me think this is a nerve issue---which Topamax can help, along w/ the Neurontin I'm already on.
When I saw my weight at the doctor's today I wanted to cry. I have never weighed this much in my whole life. I used to be so athletic. I used to do triathlons---but now I can't run b/c it hurts my bladder. I used to love cycling---but it hurts my bladder. Anything that is "jarring" hurts my bladder. So all I can do now is weights, walking, and the elliptical machine. It gets so boring. And I'm too fat to put a bathing suit on so that's out.
I'm really hoping Topamax will help w/ the nerve pain and it would be great to lose weight. I started WW again last week, I'm doing it on-line.
PS, I don't even know how I got this fat b/c my diet is so restricted b/c of IC. ??? ? ? ? ? I don't even eat chocolate!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...
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LeeAnn,
That is great news I hope you have good results on it.. What doses did your doctor start you on?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.
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Everyone...Please keep posting about the results of this med. I really want to know how you all do. I want to know what side effects you all have on it. What has your doctors told you about it?
I am very interested in how you do without the Elavil, Leslie.
leelee...Please let us know if and when your night frequency eases up.
Elavil has been my miracle drug. I don't have the amount of pain I had before beginning it. That was horrible. Now it is just a slight burning most days. Not enough to stop me from doing whatever I want to do. I do still get an occasional flare, though.
Your stories will help me decide if I should talk with my doctor about it.Sharon
Shopping??? Did someone mention shopping? I'll get my hat... ;-)
Where I can be found most days.
Link to the ICN Patient Handbook:
http://www.ic-network.com/handbook/
Link to the IC Diet:
http://www.ic-network.com/diet/
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.Comment
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I am on Topomax 100mg. twice a day for my chronic pain and I started it on May of 2004. It works some.
Deborah Bush
I have IC, the IBS, Heartburn, High bloodpressure,thyrod problems, depression and clorties pain.Comment
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Deborah...What do you mean by "It works some."?Sharon
Shopping??? Did someone mention shopping? I'll get my hat... ;-)
Where I can be found most days.
Link to the ICN Patient Handbook:
http://www.ic-network.com/handbook/
Link to the IC Diet:
http://www.ic-network.com/diet/
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.Comment
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