Hi THere,

Of course it is harsh on your body! All those dose changes in a short period of time are not easy for your body to adjust to.

The only thing I can really say about Topamax is that it has the nickname of "Dopamax" It will make you kinda stupid for a bit 6-8 weeks for me (now I have been on it for over ten years and take 300mg/day). So, I do not know how long you are staying on "Dopamax" before another dose change. 100mg or 50mg 2x/day tends to be a pretty standard dose and most people regain their intelligence once the body adjusts. I might suggest, if you get headache relief, perhaps giving it a bit more time before another dose decrease. Funny thing, when I first started Topamax, every thing tasted like Chicken McNuggets to me and I could smell them everywhere...still can't eat the darn things!

Regarding the hyperventilating, it might be good to get your CO2 levels checked-hyperventilating can be a sign that you have low levels of carbon dioxide, and your electrolytes might be a bit out of whack...maybe call your PCP and get a check up...ask what labs she is running and just ask about CO2 and your hyperventilating-she will be able to tell if this is the case just by your blood work. No special test.

Until then, you are on a high dose of Diamox, get plenty of potassium-OJ or a Banana in the morning, and snack on raisins throughout the day to keep your levels up (unless you are on an RX supplement?)
Drink lots of water! You should never be seen without a bottle of water attached to your body somehow :)

I really can't speak to your Dr's thinking Re: Diamox dosing...I have said in other posts, I've not seen Docs RXing such high doses before...I do think he needs to pick a dose and stick with it so your body can adjust...

Also, also you may want to try out a new Doc...your current Doc is all over the map with dosing and seems unsure of what to do...he should know to let your body adjust...maybe interview another Doc just to see if there is a better match out there?

Best, LuLu

I so understand what you are going through. Sometimes my dosages change so often it's hard to remember what I'm even supposed to be taking at that point in time. I'm in the process of decreasing Diamox from 3000mg to 2000mg. My PCP and Neuro say that a min. dosage of 2000mg is needed to significantly alter csf pressure, for most people. There's no research in IH, maybe it comes from Hydrocephalus research. I have no idea.

Dopamax is for sure the common name! The only good thing I have to say about it is that I lost a lot of weight on it. Nothing sounded good to eat, nothing tasted good, and I didn't have the energy to cook or eat it anyway.

Diamox can make your electrolytes and blood gasses go wacko. It does mine. If your body is acidotic the feeling of hyperventilating is actually your lungs blowing off extra CO2, which lowers the acidity in your blood and tissue. Your lungs would be doing a good thing.

Yes, please go ask your doctor about getting tested. If your CO2 levels are low with a regular blood test (with blood from your veins, as usual), your doctor might send you for an arterial blood gas test. They are much more accurate, but you usually have to go to a hospital outpatient lab to get it done. They'll be looking at your Ph level, in the end.

Your regular blood test will also show how your potassium is doing. Potassium that is too far out of range can cause a heart attack. You may not even feel that bad and still be wayyyyy out of whack. I felt out of breath and tired and flu-like, and had potassium of 12 at the lowest in the emergency room (then 3 days in the cardiac unit with a potassium IV drip).

If your set of tests are okay doesn't mean they always will be. It took some time for mine to start going south. Now I'm tested every 2-3 months. More often if something isn't right.

Ohhhhh... I just love high-potassium foods. They are amongst the yummiest. Google high potassium foods and you'll get a thousand lists of them. Oh - are you on a potassium supplement?

LuLu,

What's so interesting about these medicines and dosage changing is in February (?) the dr (differet dr, kinda kicking myself right at this moment for leaving him honestly...) started lowering the dosage of topamax from 150 mg 2x a day and ultimately off of it, had the Diamox dosage up to 3,000 mg a day. In April (ish) he lowered it to 2,000 mg a day.

Fast forward to about 3 weeks ago, after an LP with an opening pressure of 24, I ended up back in the ER twice once for a blood patch the second time for acidosis. When I mentioned this to the dr yesterday after he said he wanted me to increase the Diamox again, he wasn't "worried about me being acidotic on paper, but what did it feel like?" I could barely walk! I was extremely fatigued! And what's bad is, about a month ago now I hurt my foot (I have club feet so this is not entirely unusual) but have been in a boot, so when I mention I've been having trouble with hyperventilating he blames the foot and that's "your bad foot and I can't do anything for you." I fail to see where my foot affects my ability to breathe! Sorry, vent moment.

As for finding a new dr, I know. This guy is not working so well for me. It bothers me though because I've had a couple of neurologists, so I'm thinking I'm the problem now...

Thanks for the help as far as confirmation about the Diamox - it just didn't seem right to yo-yo so much,
Kristena

Kristena,

O, M'gosh! Is it possible for you to go back to your old doctor?

You are not the problem. I honest to god wonder how some of them make it through medical school sometimes. But there're doctors that are good and bad, just like there are tech help people that are the same. The career doesn't matter. The fact that we have a rare disease makes it even worse.

I've gone through five neurologists and have only found one good one. He's the one I have now. He's a little short on the very latest IH knowledge and he isn't willing to try the newest stuff, but he's extremely smart, a good communicator, and he's overall a very good doctor.

I hope you find someone soon.

Hi Lovey!

When I call you Lovey, I can't help but think of The Howell's on Gilligan's Island-Mr.Howell always called his wife Lovey-Am I really old or do you remember that also?

Anyway, NO you are not the problem. Very few Dr's specialize in or keep current in PTC because it is rare and, many Dr's never see a single case in their entire careers. Some folks travel hours to see a decent Dr so the "Shopping Around" You are doing is wise and necessary

I'm sorry, but I could not help but chuckle at your foot being the cause of your CO2 deficiency :) It sound like this Dr does not know how to treat PTC and is just kind of winging it, unfortunately at your expense.

I respectfully disagree that your lungs are doing a good thing by blowing off extra CO2 via hyperventilating. The body needs a balance of Oxygen and CO2 , and chronic Hyperventilating is not a healthy thing.

However, I do agree that it is a good idea to see your Dr to get your electrolytes checked and, an arterial blood gas test usually is ordered. Sometimes, baking soda is RX'd to balance out acidosis-strange huh? Anyway, here is a link to Lab Tests Online and it explains about CO2/Acidosis and at the end you can send in a question for a Lab Scientist to answer. It takes several days, but I have never had a question go unanswered-so a good resource

http://labtestsonline.org/understanding/analytes/co2/tab/glance

Again, I can't really comment on your Diamox dose as when I was treated, myself and everyone I knew were on doses no higher than 500mg/day (except a few exceptions that went up to 1000mg) while getting the same lousy side effects and the same benefits.

So I am not familiar with the new research on the benefits of such high doses, just again that your body needs a steady, constant dose of any medicine at roughly the same time every day in order for you to get the most benefit.

You and I seem to have a little bit in common-I often had opening pressures in the low 20's-not the highest out there, and without a blood patch it could take almost 2 weeks for me to heal naturally which meant major spinal headache-ugh.

As for a Dr, are you being treated at a hospital or private practice?
I see you live in IL...Would you have to travel very far to go to a hospital with a good reputation in Chicago, one with a Neuro-Opthamologist on staff?

If that is going to be too taxing on a regular basis, I would put yourself on the waiting lists to be seen at John Hopkins and the Mayo Clinic for a complete work up and a really good treatment plan. They don't turn anyone away, there is usually a waiting list of 3-4 months though.

I'm not sure from your reply where you stand with the Topamax dose, if you are on a potassium supplement?

Also has any Dr given you a long term plan? Is Diamox working, are your Visual Fields improving, are your optic nerves looking good?

Take it easy on your poor foot, and continue to post...
:) LuLu