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...
So, my doctor took me off of Topamax because my hair was falling out. She wanted me to start on 250 mg. tablets of Diamox. I thought I had these at home so I didn't ask for her to write a new prescription. Well...I screwed up....what I have at home are 500 mg. tablets and they can't be split in half. As I was completely out of Topamax and it was the weekend, I had no choice but to start on the 500 mg. dose of Diamox.
How's that going you ask?.....Not well. I woke up yesterday morning with a horrible headache and had to put up a dark curtain to block out the light. Dilaudid merely took the edge off the pain. Then today the "whooshing" noise returned. I called the doctor but am still waiting for a call back. Does anyone have any suggestions?
MM3
How's that going you ask?.....Not well. I woke up yesterday morning with a horrible headache and had to put up a dark curtain to block out the light. Dilaudid merely took the edge off the pain. Then today the "whooshing" noise returned. I called the doctor but am still waiting for a call back. Does anyone have any suggestions?
MM3
Hope our chat tonight helped you understand what I did. But for everyone else who I have completely confused, I had two entirely different tests done. The first was a pressure test that they actually installed a pressure sensor in my head, That test was done whlie my headache was very mild and unfortunately the results showed the same thing with my pressure just at the high end of normal. Based on those results my NS agreed that when my headache got worse for 3 or more straight days that we would try a drain test. The drain test immediately eliminated my headache and neck pain but they had trouble (the resident) getting the drain in so I lost too much fluid and ended up with a LP HA. That went away quickly and I felt great so that said a shunt would do the same thing and therefore I agreed to the shunt operation. The shunt worked for a couple months but I ended up with a CSF infection and then all hell broke loose.
The rest is history and I can't wait to get another shunt!
Hope I have not confused things anymore.
TJ
My doctor cut back my diamox by one pill a day so I went from 750mg's to 500mg's a day. Since he cut me back, I had whooshing for 3 mins once, and he told me to go back up to 750mg's. I am so confused! I haven't had any papilledema and my vision has been 15/20 in both eyes since November of last year, so two months after being diagnosed, I was back to normal other than what diamox caused (uggh). I am so confused. I don't mean to take over your topic. (I just feel lost) At times by vision is off because my eyes are too dry, and my ear drums will feel sore from dryness, it's obvious it's not fluid. I don't want my doctor to keep me on diamox just because that's the easiest thing to do. I was taking 750mg's, I was suppose to cut back 250mg's a day each month until I was completely off of it. And because I had a few mild headaches and whooshing for a few mins, now I am suppose to go back up? It only seems logical to me that my body would have a fluctuation coming down on the meds, it's been dependant on diamox? After reading some of the stories here I feel so blessed not to have had any of the major symptoms thus far, but since being on diamox.. my life isn't my own. I have good days. I want off the medication so badly, even if it is a temporary remission. I want off! My doctor has told me more than once how common this problem is and he acts like it's not big deal, but he has no idea. I feel like he will keep me on the meds as a precaution even though my life has completely turned upside down. So I guess what I am saying is the whooshing didn't persist and neither did the headaches. I don't know what to do.. I want off the meds so badly. Again, I am sorry for writing in your topic, it's just that I know the meds can cause whooshing and ringing, it can even cause headaches and blurred vision. I am at my wits end.
First... don't ever feel the need to apologize for chiming in on "my" topic. This is not just my topic. This is an issue many of us share in common. I believe that is why it is so important to post here. What one person says may trigger an idea or issue for another...it's meant to help. So welcome.
Second...I want you and everyone here to be able to get off of their medications. The only thing I can think of in your case is that perhaps you were showing some PTC symptoms that had been gone for awhile; your doctor wanted to nip it in the bud (So to speak.) If you went off medication, he may think that your PTC could come back full force. Ultimately, the decision is yours. He can't force you to take it....but, you have to be prepared for whatever comes.
TJ and I both have gone off our medication several times, only to find that after a week or two (or three) the pain and whooshing returned. He had a shunt put in and I went back on medication. I pray that you are in remission. Sometimes the only way to find out is to wean off the meds. However, I would let your doctor know should this be your decision. That way he can be around in case of an emergency.
I am not advocating this choice as your eyesight tends to be affected. But, ultimately the choice is your own.
Best wishes.
MM3
I understand what you are saying. I've been thinking about this most of the day, actually most of the week. I did go back up to 750 mg's yesterday per the Doctor's request. I just can't get it off my mind, the what ifs, what if I am OK without the meds? what if my body is just readjusting? The more I think about this, the more I think what if the fluid is returning? It's just far to risky for me to ignore the signs that it may be coming back. I hate this but I have to take the Doctors advice this time.
When you get to know me you'll understand why I am reacting this way, I have thought myself that the psc was back at least 10 times this past year, I made special trips to the Doc.. every time they would tell me on the phone to up my dosage of diamox and I refused because I wasn't positive it was back. When I did get to the doctor, I was fine. That's how I discovered all the side effects of diamox..
Thank you for responding!
I hope you feel better soon!!!!!!!!!