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AminaParticipant
Heather I’m sorry to hear of your frustration with getting proper care. Just wanted to chime in here and say that I experience some of the same symptoms you describe. I do not have a diagnosis as yet. The symptoms of sweating and shaking are most intense and paired with pressure in my head… (no way i can do a treadmill test!). My medical investigations are looking at a cranial CSF leak. I have family history of connective tissue disorder and thoracic ascending aortic aneurysm (mother and one brother), among other presentations.
AminaParticipantFirst dose of diamox 62.5mg and tripled it at bedtime. I know it doesn’t repair the cranial csf leaks or locate them but if it relieves the intense pressure maybe they will heal. Then i will perhaps have more wrinkles on my face. One doc told me “its as if you have natural Botox”. My face is that stretched with fluid. I feel it against my eardrums. What is it with excess fluid? Never where we want it!:) thanks for the input! I feel blessed to have hope today!
Where will the csf fluid go if the leaks heal and I have cranialcervical instability? I think I do. My raw data, MRI just arrived.AminaParticipantPraying that this helps me! Just got a trial of Diamox! Had an appt with my GPs locum. He listened to my poor description of what I see as the trouble and said yes to diamox! I hope this is just the beginning of a semblance of health.:) will try a low dose which means chopping up the 250 mg tabs into quarters!
AminaParticipantHi Diana
I am not sure if this is the place to reply to your post. Hopefully it is. The Seattle doctor offered psychiatric, internal medicine and rheumatology consults. No diamox or help with the intense pressure in my ears and head. No testing for csf leaks and no answers for all the facial and scalp swelling, not to mention the POTS symptoms. In BC my many consults have not added any information to help me. I can’t believe this all started with a dermatology consult 10 years ago. Back when I could function. I suppose I’ve always dealt with symptoms but was able to brush them off or thought it was ‘normal’. I hope the neurosurgeon can help but have no idea if I will get to see him. Yes I could use some positive and if diamox helps I would try it even with a sulpha allergy. I’ve read the allergy to sulpha as antibiotic differs from Diamox.
Thank you for the cheerful support.AminaParticipantI am new to this and any forum. This post regarding csf leaks reminds me of myself. My Canadian, BC and Seattle Washington doctors have advised me to learn to cope with my symptoms but do not have any help to offer. I do not have any medications or suggestions other than look for help to cope.
I do not have a diagnosis but have every symptom of CSF Ottohrea and a family history of connective tissue disorder, and ascending thoracic aortic aneurysm. My face is swollen on the side that weeps fluid near my ear but also on my cheek and chin and one side of my forehead and all over my scalp. I have symptoms of POTS or some kind of autonomic problem. It’s very frustrating. I can not even get a doctor to look for a leak even knowing I have had two epidurals during caesarian sections.
We can not get the beta transferrin test here. The eye doctor even remarked that i have unusual fluid in my eyes! I think I’ve always had high intracranial pressure. I have tortuous blood vessels in my neck and large hepatic hemangioma. My neck is always stiff. I frequently have facial and body spasms. Apparently no chiari herniation on mri. My shoulders are always extremely tense. And I’m a very calm reasonable 53 year old woman.
I have three children with various skeletal problems of scoliosis and kyphosis and fatigue, heavy head feelings are familiar in this family. Any help to at least get the test to locate a leak would be appreciated. Thank you to Dr. Diana for your support! -
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