Trying Topamax to the mix

[dancemomof2]

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.

[leelee88]

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..:angel:

[LeeAnn]

I'll be adding Topamax to the mix after I see my doctor this week. I'm excited to try it!! :)

[dancemomof2]

Just took the first dose. I hope I don't feel yucky in the morning.

[SrMaggie]

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.

[feresp497]

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.

[dancemomof2]

I just bluntly ask to try it. He gave me 50 mg once daily. I feel a little slugglish but not bad today,

[leelee88]

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: ..

[mary124]

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!!

[dancemomof2]

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 blahhhhh

[LeeAnn]

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!

[leelee88]

LeeAnn,

That is great news I hope you have good results on it.. What doses did your doctor start you on?

[SharonA]

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.

[deborah bush]

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:hi: :cat:

[SharonA]

Deborah...What do you mean by "It works some."?

[LeeAnn]

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).

[leelee88]

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..

[LeeAnn]

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!

[leelee88]

LeeAnn,
I hope it works for you to:smile tee

[LeeAnn]

How fast does Topamax work in regards to pain??? Can anybody tell me? TIA!

[mom_in_ma]

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.

[dancemomof2]

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.

[Moonheart]

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!!!! :D

[Moonheart]

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! :D :woohoo: :bow: :pray: Oh, and the first time I took it a couple years ago? I didn't have a headache for two years! And stayed skinny!

[BrittanysDance]

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

[dancemomof2]

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

[mary124]

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

[feresp497]

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

[Moonheart]

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.

[deborah bush]

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:smile tee :cat:

[deborah bush]

Mary I take Topamax and Neurontin 900mg. twice a day with no problem.

Deborah Bush:smile tee :cat:

[feresp497]

Hi, Do most of you take topamax twice aday or once what dose is most commom? What do you do do for the thingding? How do you get relief? That soungs terrible. Thank you, violet

[Moonheart]

I was told the opposite, that there weren't hardly any drug interactions with it.

Neurontin has a side effect of weight gain that I think would nullify any weight loss of Topamax.

What's the thingding that you're worried about violet?

[L. Thomas]

Topamax was originally used as an anti-seizure medication. It is approved for bi-polar. The side effect that most experience is weight loss. It is no longer recommended because it causes osteoporosis. Most MDs no longer Rx it because of this connection.

[LeeAnn]

Is anyone taking the Topamax experiencing a worsening of symptoms?

I can't tell what is going on. I seem to have several hours of retention-like symptoms where I need to pee but can only pee a little. But I am going to the potty about 40 times a day, which is about 15 times more than normal. However I just realized that jalapenos were in a soup I was eating and didn't realize it----and I've had a serving at least once every day this week. So I don't know. Maybe it was that. ???

Anyone w/ negative experiences while on Topamax?

[Moonheart]

Topamax was originally used as an anti-seizure medication. It is approved for bi-polar. The side effect that most experience is weight loss. It is no longer recommended because it causes osteoporosis. Most MDs no longer Rx it because of this connection.

I'm finding the osteo, but not that docs won't prescribe it, just keep up with your calcium. Since it's well known now that calcium doesn't cause kidney stones, but rather a lack of it, it would help to take calcium with Topamax to preven stones and osteo.

[Moonheart]

Is anyone taking the Topamax experiencing a worsening of symptoms?

I can't tell what is going on. I seem to have several hours of retention-like symptoms where I need to pee but can only pee a little. But I am going to the potty about 40 times a day, which is about 15 times more than normal. However I just realized that jalapenos were in a soup I was eating and didn't realize it----and I've had a serving at least once every day this week. So I don't know. Maybe it was that. ???

Anyone w/ negative experiences while on Topamax?

I had jalapenos also last week and I had a flare to end all flares, DESPITE the Topamax!!! It JUST ended! YUCK! That was NOT fun!

Now I'm back to my happy go lucky self where I can almost take or leave the pain meds. Thank God!

[sweetangel2080]

Does it help your migraines too??

I want to take it primarily for migraines and also need an alternative to elavil (really helped me) as had to come off due to palpitations. still taking 5mg of elavil.
I am also taking pizotifen for migraines but put on a lot of weight since starting that so keen to have an alternative migraine med!

yes imitrex and all triptans flare me BIG time, so really want to find something that helps prevent them!

[leelee88]

Sweetangel,

I have not been on it long but I have migraines to and so far I have not had one and I usually would get one bad one a month.. I will keep you informed:angel:

[deborah bush]

Hi! Everybody Topamax is used for migraines. Violet I take 100mg. of Topamax twice day. I use that medication for my clitorus pain not my IC pain.

Deborah Bush:smile tee :cat:

[mary124]

Deborah: I was just told by the pharmarist (?) and by my doctors (primary care & neurologist) that I couldn't take both of these meds together (topamax and neurontin) as they interact- you need to read the insert of the medication or ask the pharmarist(?) next time you get it refilled.

[SharonA]

Leslie...How is it going with you?

[feresp497]

Hi, Thank you for answering me. tomorrow I start 50 mg twice a day. I have mosyly burning and shooting pain down there so the doc put me on topamax. So far it has not helped. I hope a higher dose helps. Did you get any tingling on your hands or other parts how did you cope with it? Thank you violet

[LeeAnn]

I'm on 50mg right now and so far I'm having tingling only in my lips. It's very slight and I barely notice it. I'll be increasing my dose to 100mg in another week. I only take it once at night.

[leelee88]

LeeAnn,
How is the retention?

[LeeAnn]

Hi Ronda,

It's better today! Thanks for asking! I think it must have been the jalapenos hiding in the soup I was eating. I loved it and ate at least one serving every day for about five days. The ingredients said "chipotle" and my husband said, "Baby you know chipotle means smoked jalapeno right?"

Ummm, NOOOO!!! ha ha ha! :bonk: :bonk: :bonk:

Now I do! And I won't forget either, LOL!

I just thought it was some sort of yummy mexican spice, I don't know.

Duh!!!

But I feel better today so far. I'm glad it probably wasn't the Topamax!!

[leelee88]

Yes I would say that would cause it..lol

[deborah bush]

Hi! Mary I have been taking both of those drugs since May of 2004 with no reaction. I just got on the phone with my CVS pharmist and he said there was no reaction from taking topamax and neurontin together.

Deborah Bush:smile tee :cat:

[dancemomof2]

Sharon-- I have decreased the Elavil from 30mg to 20 mg and am doing much better with adding the Topamax I am already shocked at how much it has helped. In a week my head aches have even decreased in intensity.

[leelee88]

Wow Leslie !!!
That is wonderful news, You cerntainly deserve any kind of break from pain you can get..I am looking forward to upping mine tonight..

Ronda

[feresp497]

leeann,I too had retention it was cause by my eating watermelon. alittle bit all day long. oh but it was so good. I ten to cheat alot. I am more senitive now than i use to be I used to be able to cheat before and get awayith it. today I start on 50 mg. I was so happy I was pain free. than free. Then we went to breakfast and I had pancakes and it was with real maple syrup. Well there came the pain again. Was my husban mad at me. So anyway I will try to be good tomorrow. It sure is hard. Violet

[SharonA]

Leslie...This is good news. I hope it continues to help you. Please continue to update as you come off the Elavil. Thanks...(((hugs)))

[feresp497]

Today I did much better I did not cheat on my ic diet I ate a gala apple and vanlla ice cream as treats and those are on the diet so I did good not to much pain. I really need to have it up more. I`m at 50mg now only for 2 days after one mt I am going to call see if the doc will up it to 100 mg. I will keep you posted ,violet

[deborah bush]

Hi Violet I take 100 mg tablets twice a day. I hope you will notice a difference from taking 50mg to 100mg. I will be thinking about you. Let me no how you feel. Have a nice day.

Deborah Bush:smile tee :cat:

[LeeAnn]

I have a question for other people who take Topamax----does it make your hands super duper DRY? I have been drinking normal amounts of water but my hands feel like paper. I use hand cream but within ten minutes (honestly, no exaggerating) my hand are just as dry again. The rest of my skin is normal. It's just my hands. I don't get it!

[leelee88]

Leann,
I have not noticed but I always have dry skin, but I have noticed my mouth being very dry even though I drink tones of water...

[feresp497]

D.Bush, How long were you on 50 mg befoe you were put on 1oo mg I want to be on 100 now. I just had to take a Lor tab the pain in my clitorus was so bad. Is cerial on the ic diet like honey nut cherrios. Something is making me hurt. I also have retention again and if I don>t go to the bathroom right away I really hurt after I go I get some relief. Is that the way it was with you Moonheart andLeeAnn? thank you Violet

[leelee88]

feresp..
I cannot eat anything that comtains nuts in it.. It will cause me to have retention and pain.. This might be your problem.. Also just wanted to let you know..Cymbalta has helped with my clitoral pain almost to the point where I dont feel it at all..

Ronda

[feresp497]

D. Bush,How long before your Doc. gave you 100mg from 50mg. I hope he will give it to me after one month. I am still in pain. Do you ever get retention if you eat somthing you shouldn`t? I ate somthing because because i have it again today and i had to take a lortab and they don`t take all the pain away either. Bad Day again. Thank you Violet

[deborah bush]

Violet I think it was 2 to 3 weeks. But it has been 3 years ago when I started on this med. I do not have any problem with retation with my bladder and I can eat any thing I want with no problems.

Deborah Bush:smile tee :cat:

[SharonA]

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.

[mary124]

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!!

[feresp497]

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

[Moonheart]

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.)

[BrittanysDance]

Moonheart,

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 :loco: ). 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.

Brittany

[BrittanysDance]

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.

[feresp497]

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

[Moonheart]

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.

[deborah bush]

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.:smile tee :cat:

Deborah Bush

[Vicki]

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

[leelee88]

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..

Ronda

[dancemomof2]

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.

[deborah bush]

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

Deborah Bush:smile tee :cat:

[dancemomof2]

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.

[tigger_gal]

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.

[Moonheart]

Tig hon, there are even studies now showing it's efficacy for IC. :( Can someone help find something so that she can take it to her doctor? It works wonders, and maybe we could send you some letters or something?

I know it would help you out hon, I wish there was something I could do. Even my mom ( who doesn't have IC ) asked her doc for it for weight loss or something and she got it right away!

[Moonheart]

Leslie,

I just noticed that you list being mom to your kids, furbabies, and also your husband Rick. That's so cute! :)

[tigger_gal]

you know I emailed him and sent him the link to this thread, but, don't know if he got the email, you know how it goes to the office and god knows who may get it and it may get lost. or he may have replied and it went in my spam and I missed it. I will do some research and go and talk to my reg md.

[dancemomof2]

Thanks Moonheart,
You know men really never grow up and need just as much mothering as the kids do.

[Vicki]

Well, I started the Topamax, 50mg. I feel a bit weird! I wish he would have started me at 25mg.(I'd like to hal the pill but the package insert says not to) I don't have any pain but not sure I like how I feel. I had a panic attack last night after I took it, also I have a slight headache and just generally sick feeling. The pharmacist said it would take a few days to adjust. I don't know if I will be able to stand it a few days. Has anyone else started out at 50mg? Just wondering if anyone is feeling any side effects. -vicki

[dancemomof2]

Vicki, the weird feeling did go away within a few days. It wasn't a bad feeling kindy a slight tingly feeling that I had.