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Existing, but not Living

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Old 08-05-2010, 06:08 PM   #1
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Existing, but not Living

I've been going through a h**l on earth this past 4 months. I had what I thought was a sinus headache during allergy season and assumed it would go away in a few weeks. Then I noticed that it was there all the time, and that I was not sleeping but about 5 hours a night. I saw my MD, who became concerned because I'm not usually one to complain. A CT scan came back clear of tumors, like my dad died of a few years ago. A neck MRI showed my neck surgery was OK. But when they did a Brain MRI, they found white matter lesions in my brain. A blood sample was sent to the CDC 3 weeks ago with no news yet. A neurologist took Spinal fluid on Tuesday for a two week long test to check for MS and other various diseases. All during this time, I haven't had more than 5 hours of sleep each night. My doctor says no ADs to mask any symptoms or produce side effects.

I had a personal crisis during this period when the person I cared about most in this world decided I was not worth seeing anymore. I have no parents, siblings, or close family. This has all been really hard on me. I'm unable to function at work. Having brain-fog moments because of what's going on in my head. I don't know what these lesions are or why they cause a continuous headache, but it's tearing me up.

I just need to vent and share this. I'm trying to hang on for 2 weeks while the tests are being completed, but it's so hard. My therapist sees me slipping each week and seems to understand what I'm going through. I just don't know what to do.


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Old 08-11-2010, 06:31 PM   #2
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Re: Existing, but not Living

Spots on the brain can be so many different things that the wondering is enough to make you loopy as I have been in your shoes not so long ago. If you are at least sleeping 4 hours a night and remembering to eat then you are already ahead of the game. I am sure you don't want to hear Just take it one day at a time, but that is really all you can do. Worrying is kind of like rocking in a rocker to get 5 miles down the road, tiring and useless. Take a warm shower, put on some music you like and just try relaxation techniques to help you unwind your muscles and distract your mind from the what ifs. I am so sorry you are dealing with the loss of a relationship on top of everything else, kind of like salt on an open wound. I am finding in my own life that even though I miss the person I was with, I deserve to be with someone that appreciates and loves me in return. I wish you well and hope you get some good news with your tests.
Mim Gregg

Old 08-18-2010, 05:59 AM   #3
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Re: Existing, but not Living

It's been 4 months without a good night's sleep. Topamax has reduced the severity of the headaches. A lumbar puncture has determined that there is some kind of foreign contamination in my spinal fluid, so more blood was drawn to be sent up to the Mayo Clinic. So I wait even more. Not sleeping, barely functioning at work. Paying massive copays for MRIs and doctors visits. Wondering if I'll ever have a life. Wondering if I would ever want to live like this. It's completely nuts.

Old 08-19-2010, 01:08 AM   #4
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Re: Existing, but not Living

I'm sorry to hear you have such a load on your shoulders. I am not in your shoes, but I have had exploding headaches for 4+ years and they take a toll. The best non-med thing I have found is a book called "Full catastrophe living". One thing I learned from the book was how to meditate. It has been great. I have learned to relax on a deeper level than ever before and it helps with my headaches. It is hard to explain, but when I use diaphragm breathing and meditation I get to a point where I relax on a deep level. I look forward to my own 1/2 hour now. It has helped with worrying, also.

I also use those large blue icepacks and basically try to freeze my head. It gives a little temporary relief.

So, hang in there a couple of weeks and check out full catastrophe living from the library. At the end of the book there are suggestions for relaxation cd's. Please post your test results and check back. Take care. Matt

Old 08-19-2010, 06:51 PM   #5
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Re: Existing, but not Living

I'm pretty sure that it's whatever foreign substance in my spinal fluid that's causing the increased pressure in my head that 's creating the headache. Now it's a game of sit and wait and see how long I can wait for an answer while my cognitive faculties degrade on a daily basis since I get 4-5 hours of sleep each night.


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