my head is going to explode!!! HELP!!!

Hi,

My name is Ashlee Davis. I am writing to you in hope that you can help me or tell me where to go for help.  I began having migraines around 12 years of age and am now 26. So I have experienced quit a few over the years from time to time. However, in June of last year, I woke up with a headache unlike any other that has pretty much continued constantly, having some days better, some days worse.  When this began, I lost sight in my right eye for 3 days that gradually came back. Most of the pain is located in the back top of my head, but I also have a spot at the base of my head on the right side that is excruciating at times. Most of the time it feels like I have a permanent hang over, like my brain is a balloon and someone is trying to pop it by squeezing it between their hands.  Physical activity, bending over, sitting up from a lying position, attempting to use the bathroom, etc. have all become painful to accomplish. My ability to think, concentrate, or carry on long conversations, has suffered.  I have become irritable and easily agitated, my friends and family say “mean”, because I am constantly in pain.  Some days the pain is tolerable, but there are many that have me crying almost screaming in pain.  At times I have become disoriented, had blurred vision, and lost feeling in the right side of my face and arm.  I have also had to have new contacts and glasses because my vision has gotten worse since I got them in September.
I have had MRIs, cat scans, ultrasounds of my heart, 2 spinal taps, and many other tests done.  Out of those test the doctors have only found that I have a small stenosis of my left carotid artery, spinal fluid pressure on the high side of normal, and a 1.4cm pineal cyst.  The spinal taps, as painful as they were, actually seemed to help my head, relieving the pain a little for several days after them both. However, the doctors around here are saying that it’s “just” chronic migraine.  
I have had migraines for half my life. With them sound and light bother me. And when I take Maxalt or Excedrin, they usually go away, lasting 2 or 3 days at the most.  However, these or this headache that I have been having since June has been different and has not completely gone away yet. I have had a headache every day since June. I have been in and out of the doctors offices and the ER several times, trying all kinds of medicine and shots for pain that just haven’t worked.  None of the migraine meds or preventatives has helped.  And the pain meds only put me to sleep with the pain still there when I wake up.  I even had 40 something shots of Botox in my head twice as an experimental treatment, that didn’t work.  I have also had nerve blocks and trigger point injections at the base of my head every 6 weeks.  Nothing has worked.
I live in the southeast corner of Alabama, close to Dothan.  We only have a few good neurologists in the area. They have all said they have found nothing, but migraine.  I have done research on migraine and on pineal cyst. I really do not think that my problem is migraine. However, many people online that have been diagnosed with a pineal cyst have all had the same symptoms as me.  I am desperate for help. I just want my life back!  Does you know any doctor that knows something about these pineal cysts? Or could my headaches be something else? Can someone please help me?!



Ashlee Davis

[bev62]

I'm so sorry you are having so much pain.  I use to have the same thing. I had all kinds of test that showed nothing. Every month, the week before my period I would end up in bed for three or four days from the pain.  I had a hysterectomy 4 years ago. I have not had a migraine since. It may be hormonal, I would have never thought that hormones could have caused so much pain.

[Smiling67]

I'm sorry for your pain.  I'm experiencing the SAME thing myself, though I had an 8mm stroke in my right parietal lobe last June.  I've had MANY tests done and was told this is a "normal" reaction post-stroke.  I was also told that many "young people" (though I'm not young..I'm 42) often have "minor strokes" and never know it and the cause of them are never known.  Right now I'm on Gababentin 100 mg 3x a day and Topiramate 50 mg 2x a day...yet they don't really seem to help the constant headaches.  I'm off to yet two different neurologists next week for hopefully some helpful news.  Have you ever been put on straight oxygen?  Believe it or not, that's one of the few things that's actually taken the edge off the pain.

Have you tried staying out of flourescent lights?  If you have no choice, try changing the bulbs to a "day glow" bulb...they're more yellow than white.  Stay out of Wal Mart or Walgreens without a hat!  If you're prone to light sensitivity, those two stores are HORRIBLE!  Grocery stores are bad too!  Have you paid attention to what foods may add to your migraine?  The caffeine cycle is horrible!  Avoid it at all costs!  Cheese too!  (sniff, sniff!)  I have found out that SMELL has become a HUGE trigger!  

Here's a neat trick that may give a TAD bit of relief.  Pour an entire jar of KARO syrup into a gallon freezer bag and put it in the freezer for a few hours.  When you lay down, put it at the base of your neck or on your temples....it stays cool for HOURS without the condensation and molds quite nicely to your body.  

I hope you find relief soon.

Laura

[adavis08]

Thank you for your advice. I have tried everything I could think of. I definately will try the new ideas you suggested. Its weird that you mentioned Walmart, because just about everytime I go in there my head gets worse. I didn't think of it being the lights.  I appreciate your help. And pray you get good news from your new doctors. Hopefully they can help. I have yet to find a good doctor around here, they all pretty much say they don't know how to help me because none of the meds they have tried has helped. Good luck to you and God Bless You!! Thanks again for your help!

[adavis08]

thank you for your advice also. i have an appointment with my gyno next week to talk about my headaches. hopefully he will be able to tell me if its hormone related.

thanks,
ashlee