February 28, 2017 at 3:28 am #1090Bea17Participant
I’ve tried Diamox several times (my body usually reacts to medication to I’m cautious) but it hasn’t improved my chronic head, neck and shoulder pain. I wonder whether there is anything I could do to improve results (I’ve checked bloods). So far, I’ve tried half a tablet at night and a further half in the morning but it’s resulted in visual disturbances (flashing lights) and a feeling of nausea.
My symptoms all started three years ago after a minor head injury. MRI shows a Chiari 0 which everyone dismisses as not relevant but this has been life-changing for me and I recognise most of the symptoms in Dr Diana’s book. I had minor symptoms before like racing heart and gastro problems but didn’t realise how relevant they were because nearly all the women in my family said “Oh I get that too” so you think it’s normal!
Your advice would be appreciated. Is my cautious approach the reason and should I take a higher dose if no improvement with half a tablet or is it likely that I have cranial/cervical instability? I can load scans if anyone is interested/qualified to diagnose this.
Thank youFebruary 28, 2017 at 7:25 pm #6126Dr. DianaKeymaster
Hi Bea, I hate to hear that you are dealing with this — and as patients, it seems we are left to our own devices to try to figure it out! Crazy, right? If your CO2 levels and 22 or higher, I would be tempted to try 250 – 500 mg of Acetazolamide (not the timed release) at night to check response. The appearance of Chiari Zero can indeed be meaningless, or it can mean high intracranial pressure (external communicating hydrocephalus variety usually) or a spinal leak resulting in LOW intracranial pressure. If it is low, this dose of Diamox will likely cause head pain at the top of your head (going away when lying down or after 3-5 hours). Maybe that will help you figure it out? Gentle hug…March 1, 2017 at 5:30 am #6127Bea17Participant
Thank you Dr Diana. I’ll try the higher dose but have always suspected a spinal fluid leak as, for 18 months after the accident, I had metallic tasting fluid in my mouth every time sat upright in the morning. Also, after my accident, I felt the need to lie down and drink water all the time. Gradually, I’ve been able to stand up longer but, in the three years since, I can only do 10% of what I used to do. The more I do, the more the pain increases and it only reduces when I lie down. Is there a test for a spinal fluid leak and is there any hope of putting this right again? I’ve never been able to understand why the consultants I’ve seen can’t diagnose my problem as am in excruciating pain every day.
Best wishes and gentle hugs to you too.March 5, 2017 at 3:28 pm #6132Dr. DianaKeymaster
I understand how frustrating it is — many of us can be intensely ill and can’t believe our doctors are not treating us as an urgent problem, right?! You are not alone in that feeling, certainly. If your leak is through your nose, a beta-2-transferrin test is possible (but very difficult because of the amount of fluid needed). If it is a spinal leak, imaging tests are necessary. A good site for information on spinal leaks is http://spinalcsfleak.org/ We see patients with high and low intracranial pressure at POTS Care and do our best to figure it out non-invasively. If it is appears to be a spinal leak, doctors experienced in leaks must test and repair. It is worth seeking out the experts! On the site mentioned above, you’ll see some of the experts in this field chime in. Worth a look?
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