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Spinal Headaches Are Here To Stay!

Almost 7 years ago I had an Epidural due to a C-Section.  I began experiencing the spinal headaches once arrived home from the hospital.  I went into the ER and had the Blood Patch done.  This process was very painful, and I found out later by another DR that I was not numbed up all of the way.  Needless to say, the Patch was unsuccessful.  2 months later I go in for another Blood Patch.  This time, I felt no pain, only the normal pressure, however, was unsuccessful.  Almost 7 yrs later, I am finally seeing a Neurologist.  During all of this time I have had these headaches all day, everyday, and have also experienced other problems as well, such as, numbness and pain down entire left side of body, vision problems, slurred speech, smelling foul odors, Tinnitus, short term memory loss, dizziness, nausea, dry mouth, not to mention emotional stress.  No medications so far have worked and MRI of the brain was normal.  My DR seems to want to dimiss the headaches as Migraines, even knowing the history of them.  I am not satisfied with this diagnosis.  Are there any other tests that can be done to find out if I still have the fluid leakage and can the Spinal Headache cause my other symptoms?  I can't seem to understand why I have had these headaches every waking moment of every single day since my Epidural and they can only be caled Migraines.  The pain envelopes my entire head, down my neck, and down my spine.  I used to get relief from laying down in the beginning, however that has become only minimal now.  I go back to the DR this week, so any advice or comments would be appreciated.  Thank you.
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I'm sorry to hear about your experiences.  I too just went through an extremely painful blood patch just over a week ago.  It too was unsuccessful but the headaches are slowly subsiding on their own.  My understanding is your body will heal itself eventually.  I still get the spinal headaches along with the neck and back pain.  I have had numbness and extreme vision changes.  It is due to spinal pressure.  I have BENIGN INTERCRANIAL HYPERTENSION and that is an elevation in the spinal fluid causing extra pressure.  Unfortunately, the only way to determine if this is the problem is of course a spinal tap.  My first one wasn't bad but this second time around caused a slight leak which is why they had to do a blood patch.  If you have to go in for a spinal make sure you lay flat on your back for at least an hour without getting up.  The first time I did but the second time I got up within half an hour and it was terrible.  I haven't found a lot on the internet about Benign Intercranial Hypertension but there is a little information out there if you search it.  Check with your neurologist to see what he/she thinks.  I know that all of my scans and test have come back normal.  Good luck and if you have any questions or concerns email me.  This condition is treatable and the headaches to subside once the pressure is reduced.  I take Lasix and so far that is helping but make sure you see your neurologist.  Be persistant and don't accept the diagnosis of Migraines.  I wouldn't and I wouldn't accept that I was just having a "bad flu year" which is what one doctor tried to tell me.  

Corrie
email: ***@****
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A related discussion, SPINAL HEADACHES was started.
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A related discussion, neck pain was started.
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To CCF:  Thank you for your advice and comments.  I haven't had any of the other tests you mentioned, only the MRI of the brain, however, I will mention them to my DR tomorrow.  Thanks again!!



To Corrie,

Thank you for sharing your experiences with me.  I'm sorry you are going through the same, but I am glad that I am not alone.  Your comments gave me some hope.  As you know, you feel so helpless and alone going through all of this, there are not too many people who understand.  I will definitly email you and let you know what my DR decides to tell me this time!  Feel free to email me also @  ***@****   Thanks again!  I will also mention that medication you are taking to my Dr.  Hopefully it will work for me as well.  Thanks again!   -Tiffany
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Avatar universal
Dear Tiffany:

I am sorry to hear about your headaches.  Daily headaches are not migraine headaches.  Migraines can transform into migraine headaches but then they are called transformed daily headaches.  The usual migraine headache treatment usually does not work for these type of headaches.  Migraine headaches, as you well known, are headaches that are vascular in nature (pounding), occur 1-2 times a month, have co-morbid features of sensitivity to light and/or sound, nausea, and usually lying down and going to sleep helps.  The duration is usually anywhere from 12-50 hours.  In between headaches everything is fine. Although I have not personally had a patient with a tranformated headache with a spinal leak, one never says never in medicine.  I think I would first try and rule out the other possibilities, such as a system disease.

It sounds like you have had a spinal-tap headache that has evolved into a daily headache.  I would serious doubt that you still have a spinal leak, as if so, there would likely be a few infections to have occurred by now.  Your description of the initial headache is very classic for a spinal leak headache.  One should be able to see a spinal leak on MRI of the spine.  The other symptoms I am not sure of.  Have you had an EEG or EMG with NCV studies?  Have all your laboratory tests been normal, B12, sedimentation rate, folate, etc?  

Although the temporal relationship is suggestive that the spinal epidural was the cause, I think I would want to rule out the possibilities first.

Sincerely,

CCF Neuro MD
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