Well, on Friday I saw Dr. Shah, which was good. He's got me set up for regular blood tests to check my metabolic levels while I am on Neptazane. Neptazane is a drug, related to Diamox, which is able to reduce the amount of cerebro-spinal fluid produced in the body. Hypothetically, this will reduce the pressure in my head. It's more commonly used in the treatment of glaucoma, in case you wanted to know. The main concern is the risk of side effects is quite high. The most common side effects is GI problems, like nausea/diarrhea/abdominal pain. I am at high risk for symptoms such is these to any medications. Kidney stones are a not-so-rare side effect. Ringing in ears and tingling are also very common.
I understand that every drug has its side effects. I take at least 15 drugs on a regular basis. However, I am one with multiple chemical sensitivities, so I have a higher chance of having side effects. And this is a drug that is prescribed with caution only in necessary circumstances. To reduce this risk, it is started at a low dose, and gradually increased as tolerated.
Hopefully, my body will tolerate it!
Even more hopefully, it will actually do some good for my exploding head. I've been offered this medication in the past, and have avoided it out of fear. But the pressure has been so bad lately. If this can't help, I'll have to wait for surgery. I really wonder what would happen if I had a spinal tap done right now...if my pressure reading would be high...if it would improve my symptoms. It sounds like a nice idea.
Anyway, I saw Dr. Shah to arrange for blood tests to check my potassium levels. I'll be supplementing potassium as much as I can, since it will be drained from my body by the drug.
Another concern is that Neptazane usually decreases sodium levels. I'm already supplementing sodium with salt pills at least 5 times a day. I wonder if I'll have to increase that to keep my blood pressure up. Neptazane is used to treat fluid retention, which would really work against me in my fight to keep blood pressure up! I take drugs to force my body to retain MORE fluid.
Also, Neptazane is listed as interacting with Lithium, because it drains salt from your body, and Lithium is a salt. So, I will have to probably get my Lithium level checked as well, if I want it to stay within the therapeutic range.
It kinda sounds like an epic battle is happening within my body...many forces all fighting against each other!
Well, you can see why I've put off taking this medication in the past.
I'll be starting Neptazane as soon as my pharmacy delivers it, probably later this week. I hope I'll be able to continue working as my body adjusts to the new medication.
Also, Dr. Shah prescribed Darvocet to treat my chronic pain.
On a different note, I'm currently trying to figure out what to do for my joint pain from EDS. I was hoping to start some kind of physical therapy. Interestingly, I heard from June, my nurse at TCI, and she said that exercising the joints is not what they recommend for EDS joints. The only thing she could recommend is massage therapy of the joints. I'm thinking of trying a local rheumatologist or pain management doctor to at least try something.
Today, I need to get an oil change and do some cooking. I hope I can manage this. I couldn't do anything yesterday, because my body was reacting to the flu shot. I barely moved all day. Maybe today will be more productive. If I could just stop worrying. But every doctor has so far overlooked the contraindication of Neptazane and Lithium. So, it's a good thing I pay attention.
