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Headache from cerebrolspinal fluid leak, lyme or ???

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Old 07-22-2012, 05:49 AM   #1
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Headache from cerebrolspinal fluid leak, lyme or ???

Hi All. This is my first time posting. I have always been a very active, healthy person with no real pain. I have a high tolerance for pain.

I woke up almost 4 weeks ago while on vacation at the beach in Michigan with what I thought was a dehydration headache that got much more severe as the day went on, so I though I developed a migraine (though I have never had one). It progressed to a point that when I sat or stood up it was much more severe & caused vomiting. I was in so much pain when sitting & standing, that I couldn't talk. However, I was able to contain the pain when I laid down. After the 4th day I went to the ER. They just wanted to take my diagnosis that I had a migraine & pump me full of narcotics & send me on my way. but I was persistent in seeing a neurologist (due to my mother in law's prodding). The neurologist knew right away this was not a migraine due to it being positional. I was diagnosed with a spontaneous cerebrolspinal fluid leak that was causing intracranial hypotension. I was put on bed rest & pain meds to try to heal the leak, but it didn't get me fully recovered, so I ended up having an epidural blood patch to try to fix the hole. I was told that I would have immediate relief. However, I have had a constant dull headache in the lower back left side of my neck & head that sometimes flares up to the front of my head. It seems the blood patch worked somewhat as I'm able to walk & talk, but I'm still sluggish, have constant dull headaches (not to the vomiting severity I had before - atleast not yet). I did develop a sinus infection (probably picked up from the time in the hospital) for which I have just finished a round of antibiotics, but don't think my remaining symptoms are sinus related. I feel that I cannot fully function. I'm constantly sluggish, foggy in the head, & live with headache pain. I don't know if this is still from the cerebrolspinal fluid leak or not. Now, I'm begining to think I have something else. I was paranoid of ticks while in Michigan & am wondering if this is lyme disease? Could it be? Does anyone else have this?
Any thoughts? I'm desperate at this point as I have a young child I must care for & enjoy life with & I want to see an end in sight.

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Old 07-22-2012, 06:17 AM   #2
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Re: Headache from cerebrolspinal fluid leak, lyme or ???

I would think this is related to the spinal fluid leak and perhaps the blood patch just partially covered it. I think spontaneous leaks are pretty uncommon and would wonder if your spinal fluid pressure is high, and that is what caused the leak. Did the Dr look in your eyes when he examined you to check the optic nerve for edema (swelling?). Sometimes, the blood patch needs repeated, and if the headache persists, I would ask for an MRI. Lyme disease can certainly cause headaches, but other symptoms as well. A blood test can be done to rule that out, but your inital headache is classic for a fluid leak, and if your current one is positional, I think it is still happening at a lower level.

Old 04-25-2013, 11:47 PM   #3
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Re: Headache from cerebrolspinal fluid leak, lyme or ???

Suffering exactly what you have. Had blood patch but still didn't feel right. Was then diagnosed with Lyme disease. Have been on antibiotics for a month. Still have pain behind left ear and ringing. What has been your outcome?

Old 04-26-2013, 09:32 AM   #4
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Re: Headache from cerebrolspinal fluid leak, lyme or ???

My opinion is ...might be a good idea to get tested and see what the out come is. From where you are sitting you can find the contact info for igenex lab. Testing is expensive. BUT it might help shed some light whether it is lyme related.

YES lyme can do this. You might want to be tested for co-infections also. There is a reason why this all of a sudden came on. I had constand migranies for over 10 years. Until I started treatment for the real reason I was sick. Lyme and co's.

If you truly feel you have lyme. Get to a Lyme Literate Medical Doctor. Sinus infections could be from lyme or other bacterial infections.


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