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headache when standing

I have been suffering for about a year now with tremendous headaches. It is now to the point that I can only be upright for about 15-30min at a time. Only lying down makes them go away. I have no quality of life and struggle to take care of my family. I also have balance problems, numbness on the left side of my face, sometimes my left ear seems clogged, and chorea without huntingtons. I am 39 and female. I have had MRI, spinal tap. EEG with no findings. Also tried allergy med, and lots of pain killers to no avail.
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Avatar universal
thanks for the help. the dr said I had an orthostatic headache. possibly form a spontaneous csf leaf. had a blood patch an feeling pretty good so far!
Yeah!
Are you Indian? I notced some of your schools had indian names.
I have been working in India for the last 14 years and came home because I wasnt well.
I really appreciat your insight.
Helpful - 0
351246 tn?1379682132
MEDICAL PROFESSIONAL
Hi
Welcome to the forum!
A headache that worsens on standing up and improves or disappears on lying flat is a spinal headache. This happens when the CSF pressure in the brain falls. This usually happens after spinal anesthesia, spinal taps, or spinal injuries.
However in some people this happens without a cause. This is known as spontaneous intracranial hypotension.
A procedure called an epidural blood patch, if is successful, even temporarily, it generally means the patient does indeed have a spinal headache. A small amount of the patient’s own blood is injected into the space between the dura and the bony spine known as the epidural space. If this causes temporary or permanent cure of headache, the diagnosis of spontaneous intracranial hypotension is confirmed.
Other tests are a spinal tap and measuring the pressure. Although spinal fluid pressure is usually low in patients with spontaneous intracranial hypotension, it can be occasionally normal due to variations in the spinal fluid pressure.
A dye can be injected into the spinal fluid and entire spine’s CT scan is taken to locate the leak.
Please discuss this with a neurologist. This may help you cure your headaches. Of course a confirmed diagnosis cannot be given on net, but there is no harm in discussing tis with a neurologist.
Hope this helps. Please let me know if there is any thing else and do keep me posted. Take care!

Helpful - 0
Avatar universal
yes I had all the tests. but not sure about trigeminal nerve..I has an MRI with and without.
Helpful - 0
875426 tn?1325528416
Have you taken your BP and pulse laying and then standing?  I can have headache surge standing up (migraine)... I have postural orthostatic tachycardia syndrome. Has an ENT checked you for inner ear/vestibular problems?  Have you been checked for artery blockages/blood vessel weakness?  Has anyone checked out your trigeminal nerve?  Was your MRI with and without contrast?
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