Well, I started Topamax!

[born2swim]

Oh that is just terrible that your bladder was damaged, severely, during the hydro/cysto. It's sad to think that you got worse due to a diagnostic procedure/treatment option. I really hope you improve and stay better on Topamax. Elavil was one of the first meds they put me on, so it's a shame I couldn't take it. It sounded like the best option for me.

I am going to tall my doctor this morning about the Topamax. Last night was terrible. I had a bad reaction to codeine before (horrendous abdominal pain to the point I couldn't breathe and was taken by ambulance to the ER). So, last night, I was feeling terrible, I had to use the bathroom so bad, the pelvic pain was starting a bit (probably from straining), so I took Lortab (which they gave me for a cystoscope), and that made me so sick. Not as bad as the codeine, but I knew that moving would made the pain worse. I had the same pain, breathing trouble, etc, but I remained still and it passed in about 4 hours, whereas the codeine was 7 hours in the ER and took Dilaudid to squash the pain.

So... anyways... I'm not in a good place. This is where I was back in January... at my worst...

[leelee88]

If it is bothering you this much I would call the doctor and see if you can stop it and see if the symtoms go away and if they do then you know its the Topamax...I am so sorry.. You know that was my first symptoms to.. I didnt have bladder pain.. I just had the feeling that I had to go even if I didnt.. And the dumb URO did the Hydo/cysto and ruptured my bladder and thats when all the severe pain started. That was last Nov... So I really hope they find something that helps you..To bad you cant take elavil it seemed to really helped me with that nerve pain.. I wish I could take it again..
((((((((hugs))))))))))

Ronda

[born2swim]

No, they didn't say I have any indication for PFD. They actually said that my muscles seemed good in my pelvis and that my bladder was contracting normally (not overacting). They felt like there is some type of nerve issue going on (my bladder is saying "ouch, ouch, ouch" and my brain is reading that as "go pee, go pee, go pee"). That is why they wanted to try Topamax. Tonight is absolutely terrible. Each night has progressivly gotten worse. I actually had to take Lortab (liquid Vicodin) tonight because I started to get some pain, which hasn't happened outside of my period and running. My urgency is through the roof and I am unable to sleep. I haven't had that since I started the Atarax in April. I really don't know if this Topamax is going to work for me

[leelee88]

Have you ever been Dg wit PFD?

[born2swim]

Well, my uro-gyno said I'm the most interesting case he has right now because my pain is endo (by my description and history and hiatus in pain with BCP, but now it's back). My frequency/urgency is how people with IC describe it to him. So, he gave me the IC diagnosis based on the PST even though the cystoscope (on 2 occasions) came back normal. What kills me every day is the urgency/frequency. It interferes with my life in every way. I'm miserible. I feel like I can't go anywhere some days because I don't know where I will be when the urge gets too strong to ignore (I'm just trying my best to ignore it and "train my bladder"). Since the Ultram seemed to dull the urge signal a bit (taking it from a 10 to a 6 or so) they thought maybe a nerve type drug would do the same. So, they suggested Topamax because Elavil is out of the question for me. I really need to take some vitamins... I guess I'll have to research some things on that.

[leelee88]

ok so you are just trying the Topamax for urgency? you dont have pain with IC? And I am not on any vitamins because except calcium..

[born2swim]

Ronda,

Honestly, I don't have pain outside my period or running. I just have to pee all the time. My urge to go is so bad right now because the volume of my urine is higher. They say to drink more with Topamax, but I'm not drinking THAT much! Geeze! I feel like I could cry today because it is driving me nuts. Also, I can tell I'm "feeling" the drug a bit in that my eyes feel heavy and when I move them, they move slowly to the object I move them to. That's it in terms of side effects so far (that and I feel warm, but that could be Florida heat too!).

I just need this urge to go away! I'm on 25mg for 2 weeks then I see my doctor in 2 weeks for bloodwork and to talk about the med. I just read that Topamax can lead to B12 deficiency, which is bad because I am already deficient and on shots. So... I have to be careful with that on top of the other side effects.

What vitamins do you take... sorry off topic... but I'm trying to find something to take. I have been doing a Flintstone vitamin here and there to just give my body a boost, but I can't do that when I'm having a bad day like this!

[leelee88]

Born2swim,
How is your pain level?
Mine is gone so far with the Topamax and yes my frequency and urge was very high at the beginning just as Tig-gal and Moonheart. I was about to call it quits but they both said all medicines take time.. So I stuck it out.. The urge has gone down. the frequency is about the same as before the Topamax, but the biggest plus is when I went to 50mg and the pain decreased so much...If I was you I would try it a little longer but if you keep haveing the same affects then give up and you can say you gave it your best shot..((((((((((((hugs)))))))))))

Ronda

[born2swim]

Yeah, Moonheart was telling me it can be a diuretic. It makes me have to go the same amout, but the urge is stronger because the volume is larger...

I just don't know if it is temporary...

It has been noticeable the last 3 days... and today was the worst, but I did try ranch dressing last night. But even so, I have noticed it being a bit "worse" the first 2 days and each night I haven't been able to sleep through like I have been able to with my Atarax (still on it BTW).

[LeeAnn]

Oh no! This didn't happen to me. I didn't know it was a diuretic. Is it really? I never heard that. Topamax doesn't do this to me. When I first started taking it I had my doubt but it turns out I had eaten a soup that had an ingredient in it I was reacting badly to. I just looked it up in my 2002 PDR and "micturition frequency" and "retention" are listed as side effects so it's possible that it is causing this. I'd call your doctor if I were you. Oh man, I was really hoping it would help you.

[born2swim]

Ok... so you said that Topamax can be a diuretic? My frequency/urgency is worse. It's been 3 days. Is it a temporary thing? I'm going as often as before, but the volume has increased drastically and so the urge has increased drastically.

I'm scared to keep taking this... each day has been worse...

[Moonheart]

If possible when you get like this just relax.. I would just sit down for a few min and take a few deep breaths..Take a deep breath through your nose and exhale through your mouth slowly..Thats if it gets to bad..That only happened once for me, but that was because I was cleaning so much and would not stop..lol.. I learned my lesson on that one...Take care

Ronda

ROFL!!! Remember the post where I was gardening and you were like "Slow down Moonheart, your making me tired!!!" ROFLMBO!!! :woohoo:

[leelee88]

well i am glad its not as bad tonight

[LeeAnn]

that's good

That's good Alyssa,
I'm crossing my fingers that it will work just as good for you as has for me. And that we don't build up a tolerance to it..........

[born2swim]

Well, the second night was not nearly as energizing!