MM3,

Sorry to here you are still feeling so bad.

I have been seeing a NS since 2005 for a benign brain tumor which was removed last year.

After that surgery I had to see a NO because I was losing my vision. He started me on Diamox and I was seeing him once a week because I had papilledema, At that time the PTC was diagnosed and they said I probably had it for a while.

Long story short I end up with optic nerve fenstration surgery last
June and still see the NO. He thought I would be off the Diamox by October than April. I had a slight relapse with swelling in my eyes in Jan.

In March I had an MRI followup from my last year tumor removal and talked to the NS and he said it will still showing excess fluid.
At that time I had no headaches, but said a shunt may be in my future.

My headaches that I had prior to my surgery last year have returned. The NO says as far is his is concerned my eyes are okay and I do not need a shunt. He said we would have to all be in agreement on this.

The NS says the eyes are just one part of PTC and things can change rapidly. My pressure is up and down, I have headaches and have bad memory problems.

I am had an LP last week which was as high as when I had papilledema last year. I am scheduled for a shunt in July. I just want my life back.

I have an appointment with the NO next week to tell him about the shunt as I will still need him.

If I were you, I would try to talk to your primary care phys or someone else who can get you the help you need. I know this PTC stuff is tough as each doctor only treats one part.

The best help I have had is from the nurse practiticioneer (sp?) at the NS office.

I hope you can find someone to help you. Sorry for the long post.

Karen

Hi MM3,
I am on 200 mg of Topamax per day, and I swear I used to be smart! Really I was!!!!

Topamax should help with headache pain and in some folks weight loss.

It can make some foods taste funny, like soda, or for me chicken nugggets are now the most disgutsting thing ever created.

Topamax can cause fatigue and nausea, but if it is severe, or worsening over time instead of lessening, you should call your doc.

Topamax works wonders for the pain and pressure in my head...this is what the med should be doing for you also. It should not be making it worse.

In my "dopamaxed" opinion I would call your doc...it never hurts to be on the safe side.

Feel better soon,
Lucy

Buddy:

Thank you for the input...any support is always good support. I have truly been battling with this for two years now and have seen my PCP doc, neurologists, chiropractors, ENT's, OB-GYN's and more recently NO's. The PTC was finally diagnosed in early March at which time I it was discovered that I had an opening pressure of 29 and papilledema in both eyes. I was placed on 1500 mgs. of Diamox and 20 mgs. of Lasix along with a whole host of other narcotics...I thought the Diamox alone would kill me. They later raised the Diamox to 2500 mgs. until I said enough is enough and quit the meds as it became clear to me that my doctors had no idea what they were doing. (This was a nurse practitioner by the way...LOL) Now, I am seeing a NO who is supposed to be one of the finest PTC specialists in the country....so, I truly assume she must know what she is doing. I just think an LP needs to be done. I am going in later this week for a CAT scan to look at my sinus area to look for any areas of wearing due to PTC high pressure subsequently causing CSF Rhinorrhea. So, she is looking for something.

The doctor did warn me of a side effect of Topamax where you can get a burning and pressure in the eyes kind of like glaucoma which will lead to blindness but is completely reversible. So, I did call the doctor today because my symptoms sound similar and I had just upped the dose again. Of course, it is difficult to tell if my side effects are from the upped dose or from the pressure. So, the doctor recommended that I skip a dose tonight and fall back to the lesser dose tomorrow night until I am seen again. If things get worse, or don't get better, he said to come in to the office.

Lucy:

200 mgs.???? OMG....Stupid???? I would be drooling in a corner!!!! Holy cow!!! I don't know how you function, let alone read and type!!! Like I said it has only been three weeks. How long did it take to see any results for you? The doctor did tell me that it needs to build up in the system so I didn't expect it to work right away.

BTW...I took some Excederin Migraine, and it seemed to help me to feel better for a little while although the effects are starting to wear a little. This is weird because Excederin Migraine is supposed to have a longer lasting effect...hmmmmmm....

Trying to stay away from the heavier stuff though. Anybody know of any OTC stuff that seems to help well??? The only problem I have is Ibuprofen...if I take too much I retain a lot of water which of course goes directly against the pressure issue...so any other ideas would be helpful.

THANKS!!!

MM3

HI MM3
Sorry to hear your struggling but glad to hear that your doctor has some plan to try to help you.
I always find these posts so interesting. you mention that ibuprophin causes you to retain water. My neuorologist recommended that I try taking 600mg Ibuprophin daily for one week; which I did. This was when my headaches got worse. Although I stopped it this week and still feel terrible. Such a guessing game.!!
hope you feel better soon!!!

Lucy - you mention that topomax works wonders for your head/pressure. I think I want to give this medication a try. I've tolerated diamox at a low dose but it doesn't seem to be giving me much relief and when I increased the diamox it made my headaches worse. I hope to talk with with nuerologist next week for a new plan!! Do you take any other PTC meds along with your topamax?
If i could get some relief I'd be sooo happy!!! But, i do need to function. i work full time and care for a 4 yr old.

Best regards, Angie

Angie:

Where do you work? I really am trying to figure out what type of work I might be able to handle if I were to return. Prior to all this I was working as an Administrative Assistant/Office Manager/Building Manager for the Federal Government. Everyday I had a headache and pressure and most days I fought against cognitive function and memory problems. Every evening I would come home shower, put on pajamas and crash on the couch until it was time for bed, and then start all over again. Weekends, I was on the couch or in bed. That was all I could give. Now that I am on this medication, I just can't imagine. Let alone take care of a four year old. I have three children, but thank goodness they are older. And, I have a wonderful husband who helps with cooking, etc. Any tips you can offer???

MM3

Angie,
I take Topamax, Lasix, and Potassium. I find Lasix less harsh than Diamox on my stomach....

MM3,
It took about 6 weeks or so before I really noticed a difference with Topamax and I didn't really get any help from it until I got up to 100 mgs and up....anything less than 100mg did nothing for me. However, like I said I USED to be smart...now I can't remember how to get home from the market.
I don't know of any OTC's that have been effective for PTC pain...at least not for me.

Lucy

well as you know I could'nt tolerate topamax but if it is anyting like diamox with the cognitive stuff I couldn't even remember after I left the kitchen if I took a pain pill or not.
I wish I could help you more but wanted you to know that I am praying for you.
Jazzy

MM3 - I work as a Case Manager. I have a degree in Social work. My job allows me to have a home office which is definitly a plus. I do have to see my client's every 60 days so I'm on the road 3-4 full days a month. So far, I've been able to do it. I do worry that these meds will effect my cognitive abilities. I have to write monthly progress notes on 45-50 clients each month and this does involve THINKING. I love my job and I don't know what I will do if I can't work. My only suggestion is to research jobs that you can do from home (from a reliable source). Oprah once had a show on this topic but I missed it. I'm sure there are books. ALso, Ebay is amazing if you can find a nitch that will make money without having to invest too much.
Well, just some thoughts.
Wishing you a better day today!!
Angie

Jazzy,
I didn't know Diamox had that effect as well...I never had it when I was on it. I grew intolerant of the drug eventually.
It was the Topamax for me, but the trade off of pain free days and forgetfulness was for me, worth it...
I find doing Soduko puzzles and crosswords helpful...or at least they remind me I still have a brain rambling around in there! :)

Angel, for me with Toapamx, I have not lost my reasoning or cognitive abilities (I am a social worker on disability). Simply, I am severely forgetful. I might forget a conversation I had, or need to leave LOTS of sticky notes, etc....

* I just realize I've been calling you Angel this whole time, and your name is Angie. I am so sorry. THAT, would be the Dopamax. LOLOLOL

Lucy :)

Lucy -
No worries. I like "Angel" and don't mind one bit!!! My real name is Angeline and I'm sure thats where you got the "Angel".

As usual, I'm jumping in on the conversation late, but my major problems with Topamax started when I was increased to 75mg. And from some of the research I'd done, that seemed a very common time for people to begin having problems with the drug. I had much more severe headaches, fatigue, eye pain, etc. - and then of course the itching and all-over spasms/pain started, which led to me to stop the drug altogether.

Now I'm not saying that's what is going on with you, but intolerance of the drug definitely seems to make itself known at around the 75mg mark (though sooner or later for some people), so perhaps your body isn't agreeing with it. Of course it's very hard to know whether or not it's the drug causing the problems, or the PTC, but I do know that I felt 100% better OFF of the Topamax. In fact, my headaches/pressure symptoms almost completely went away for awhile. In hindsight, I view Topamax the same way as Diamox - as a poison that did me far more harm than good!

Hopefully the lower dose will agree with you - my Neuro attempted the same thing, but at that point it was just better for me to stop the drug altogether. Lasix has been the only thing I've tried for the PTC that has been blissfully uneventful.

MM3:There isn't much I can contribute to this topic, since I've never been on Topamax, but I can sure tell you that I still have serious memory problems, serious thinking problems and decaying pronunciation abilities. Many times I can't answer quickly to simple questions or I get confused. I'm on only 125mg twice a day Diamox and I dont seem to have notable papilledema symptoms. What could be causing my memory/thinking problems? I wish I knew, but it makes me wonder that it may not be directly related to any medication but the condition itself. For an attorney's daily duties, trust me, it's NO good to deal with this symptoms, I mostly need to write down everything I do, talk, plan, think, etc...
KRys

Angie:

Thank you for getting back to me about the work thing. That makes a lot of sense. I certainly don't want to insinuate that a stay at home job isn't work. My husband's job is mostly an at home office...but, I'm sure, you would admit that there are some added benefits. I can tell you that when I was working 40 + hours a week downtown with this disease it was very difficult. First, the "dress-up game". You know, the extra hour in the morning to do the shower, make-up, dress-to-impress thing...not to mention getting the kids off. Then, the half hour to 45 minute "traffic game". Then, the "meet and greet", where I checked in with everyone and anyone to see what was going on for the day and what needed to happen. Then along with my work that needed to be done, I had a boss and several others looking over my shoulders all day long constantly interrupting me with new tasks that they needed to get done. The stress was always high. Then, of course, the "traffic game" again. Home. De-dress. Dinner. Homework. Baths. Errands. Bed. Do-over.

Truthfully, in my current condition, I just CANNOT do that again. I truly envy those of you who have great careers who give you a little leeway to take care of yourselves. I do understand, however, that almost any task with this crap going on is difficult. So, I pray for you on that front.

KS:

It always AMAZES me how similar our stories always seem to turn out. Actually, what you described sounds very similar to what has happened to me. We upped to 75 mgs. and BAM! just like that...I felt horrible. I feel like my pressures are up anyway, but that definitely made it worse. I will talk to the doctor just trying Lasix alone. How much do you take? Is that keeping the pressures down and headaches at bay???

Thanks.

MM3

MM3: Just thinking out loud...if you have already adquired skills in the administrative area, what about doing freelancing stuff as an independent contractor where you can control how much work you take, depending on how you are feeling on that week. Maybe you can make a list of you can do at home, and then find the employers that may need assistance in your area. On these days, where employers can no longer have steady employees on their payroll, maybe you can find some that may have you as in an "on call" basis, where you can accept or decline depending on how are you feeling. I can't be more specific since I don't know the details of your previous job tasks. But when I was at law school I sent my resume to many small firms or sole-practitioners that hired me when they needed the extra help. It wasn't much from none of them but adding them together, I almost had a part-time job. I tried to do as many tasks I could from home, since it's too expensive as you just said to dress-up, drive, eat outside home, parking expenses, and everything that comes with outside jobs.

You may try that or a radical change of career in order to find that job which suits your needs.

krys