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Bea17Participant
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.
November 12, 2016 at 1:56 pm in reply to: Does anyone else have these side-effects with Diamox #6040Bea17ParticipantHi Barbara
May I ask how what dosage of Dx you found gave you the least side effects and most pain relief? I’m glad the Philadelphia collar helped you. I also purchased one but it doesn’t fit me very well so I can’t get on with it.
Thanks for your advice which is much appreciated
Bea
Bea17ParticipantThank you. I’ve read your book and need someone in the medical profession to prescribe Diamox. Do you have any contacts in the UK who are familiar with intracranial pressure and how to treat it?
Best wishes
Bea17ParticipantHi Dr Diana
Thank you for advice.:)
I haven’t had a test with Diamox yet. The muscle spasms are at the base of my skull and mostly on the left side of neck to my shoulder and occasionally on the right as well. The upright scan showed a Chiari 0 which the Neurosurgeon wasn’t too worried about as he said is not a true Chiari. Pain and distress is worse first thing in the morning when I stand and also spikes shortly after I eat or during exercise. Does this mean anything to you?
Best wishes x
Bea17ParticipantHi Dr Diana
I’m sorry but I don’t think a photo would show anything through my hair but I will try to explain what’s happening.
When I sit up or stand, the top back/crown area flattens and indents slightly. This indentation can increase slightly when I walk but usually only improves if I say absolutely still with a collar on or if I lie down with pillows behind. A physiotherapist I recently consulted tells me that the small muscles at the side of my neck and in the lower part of my head are in constant spasm but the exercises he’s given me to strengthen the larger muscles in my neck haven’t helped. He tells me that I shouldn’t were a collar but it feels that my life is at risk if I don’t wear one and my breathing, temperature control and insomnia problems increase. I am taking anti-histamines which help with the sleep and reactions to food and drink etc but am in a bad way! It feels as though my neck muscles are pulling my head backwards sometimes and, if they relax when I’m tired, my head falls forwards or to the left. The Neurologist who examined me could hear a very loud bruit on the left clavicular fossa but a recent CT scans did not show the blockage in the carotid artery that he suspected only slight asymmetry of the sternocleidomastoid muscles. He also said I have brisk upper limb reflexes but lower limbs are OK. A previous upright scan showed a Chiari 0. My Neurologist is considering a Dopplar ultrasound of the carotid and vertebras done with my head in neutral and turning positions as well as tests for POTS as my blood pressure shows a significant elevation on standing. Any advice you can offer would be very welcome.
Before the minor head injury, I had previously had heart racing and allergic symptoms which seems to run in the family but my health was quite good.Any advice would be very welcome.
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