Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Saw my neuro yesterday. This was my follow up appt. after my LP on 6/10/11. I was mistaken, my opening pressure was 22 not 20; still not as high as some. But I live with horrible daily/nightly headaches. She is stoping my Topimax (300mg/day) and starting me on Diamox (250mg e.o.d.). After what I've read here, I'm a little afraid of this drug. I asked her about potasium levels, etc. She told me this was a safe drug and to eat a banana a day and oranges! LOL I see her in 6 weeks and see my eye dr. next Monday to let him know what's going on.
Wendy
Wendy
Diamox isn't a picnic. But it's a lifesaver for most of us.
Most people's acid levels are okay (Potassium, CO2). When you first start out on the drug, your doc should test your blood after about 3 months just to make sure. If it's normal then about every 6 months.
I've had a terrible time with metabolic acidosis. (blood/tissue that is too acid, as shown by low potassium and co2 levels in blood tests). Yes, it can be dangerous, but only if it gets really low. My lowest postassium was around 2.5, co2 i don't remmber but right now it's about 16.
Orange juice, banannas, avacados will help a little. If a real problem develops you'll need to go on a prescription dose of Potassium Citrate. (Citrate is better than chloride - easier for body to absorb) I'm on 30M a day. That's the equiv. of 180 banannas.
Don't worry. You'll be okay. If you get pins and needles in your hands and feet call your doc and get some neurontin or another drug to help out with it.
My opening pressure was 28 and I have terrible symptoms as well. I spent the first couple of months of my diagnosis thinking I would not be "that bad" because my opening pressure was low, and my doctors basically told me I am doing so well! I have recently started having my symptoms coming back again and it sucks. What did they give you for your headaches? I am taking amytriptyline.
I hope the drug goes well for you.
Katie
Sorry that you have to deal with this condition. However, you have come to the right place for support and information.
For Diamox, I always tell people to drink coconut water, ideally, if you can get it from an actual coconut (Young Thai) that is the best tasting, delicious really. If not, you can buy all natural coconut water, this replaces potassium and electrolytes---all things diamox can affect. You may have to get used to the taste, but it is worth it.
It also cuts down on those pins and needle feelings, which are normal, but should not be out of control.
If you, like some of us on here, have to lose weight, I can tell you this: I am on a VERY low sodium diet, am vegan (for going on three months) and avoid gluten and other food allergens. Since doing this, I have lost 18lbs and I have very few headaches and only slight pressure.
As a result, I am weaning off of diamox because I want to see what life would be like (if only for a month) not being on this helpful, yet annoying medication. (Some hair loss and acne has hurt my ego.)
I had an opening pressure of 24 and I have been on various dosages of diamox. Right now, I am weaning off, slowly, down from 1000mg to about 560 right now. (I am down from 2.5 pills to 2.75, breaking them, or scoring them, so that I can get used to each slight dosage change). My goal is to be off the month of August so that I can lose more weight and do a cleanse and juice fast to cleanse my organs of this medication.
So, if I have any advice, it's do everything healthy, somehow, I believe this will chase this away. (Oh, if only!)
Good luck and keep us posted.
Angela
To Katie, I was on amytripyline for 2 1/2 years and was doing great. I had a ha maybe once a week, but I could handle that. Then spring 2010 my ha came back everyday and more intense. That's when I was started on Topamax, which in my opinion has done nothing for the last 1.5 yrs.
To Angela, yes, I need to lose weight. I've lost 18lbs since the first of the year, but that has done nothing for my ha. I set my goals at 20lbs at a time. It's really hard to do when you don't feel good.
Thanks again to everyone for your help and advise. It is nice to know I'm not alone.
Wendy