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|Posted By : Mr.Hawaii - 7/15/2017 9:16 PM|
|Where do I start?|
I've had headaches since I was a child and I'm in my late 20's now. I have headaches everyday all day (24/7). Some days however are worse than others. On a pain scale of 1-10 my daily pain/nausea averages around 2-3. Other days the pain/nausea gets extremely bad and those I call my "episodes" (Pain/Nausea is at it's worst anywhere from 8-11 on pain scale). Those episodes will last anywhere from a few days to whenever the pain goes back down to average (2-3 on pain scale). During those episodes I am in so much pain and feel so nauseous that I can't work. Sleep, if any averages 2-4hrs per night for as long as the episodes last.
I was diagnosed with a brain infection January 25, 2013. The only reason doctors found the infection was because one day I had an extremely bad headache (not unusual) so I tried to sleep it off as I usually do. When I awake my body fees like it went 12 rounds with MIKE TYSON and a guy in a white jacket asking me who the president was and did I know where I was?! Yes, I was in the hospital. My mom found me seizing on the floor. Yes that was the first and last time I ever had a seizure. Anyway after an MRI Doctors discovered an infection. Since then I've been healed. But the headaches have still remained. Some of the Neurologists that I've worked with all seem to think that the brain infection maybe left permanent damage which is causing the pain. But since it's impossible to tell when I actually got the infection it's impossible to tell if there's a connection between the two.
I have since seen 8 different neurologists (currently looking for my 9th), 1 neurosurgeon and more physicians than I have fingers (and I have all 10 fingers). I've had at this point more than 5 different MRI's and CT scans and I've taken at least 20 different medications to cope with the pain/nausea all to little to no effect (and the list goes on...). But with everything I'm always left with the same answers "You have an interesting case but we have no idea what's wrong with you. Let's try this new med or that new med." I realize everything will be a trial and error with me but at some point the dead end roads and same answers become frustrating.
Sorry so long. At this point Any and ALL help would be appreciated!
|Posted By : straydog - 7/17/2017 12:35 PM|
|Hello & welcome to Healing Well. So sorry to read about what you are dealing with. Medical mysteries can be a total nightmare. Considering all of the various drs you have seen, have you considered going to a teaching hospital/university? A lot of times this is where people end up when their regular drs cannot come up with a clear cut diagnosis or proper treatment. Because they are a teaching facility they try to find out what is causing the problem rather than just treat symptoms.|
Get on the web & see if there is a facility close to where you live. Take care.
Moderator in Chronic Pain & Psoriasis Forums
|Posted By : BnotAfraid - 7/17/2017 7:27 PM|
|Mr. Hawaii, |
barring the infection, I am in the same situation as you. Since 2006 when head pain went daily and trigeminal neuralgia joined the mix, I have been trying to keep a pain level of 4-6 most days. NOT easy.
I am on no. 10 neurologist. They are a rare breed to say the least.
2009 John Hopkins I saw a diagnostic specialist.
2011, repressed memories of abuse landed me in a crisis center.
2017, my therapist and I plus my psychiatrist have decided that Neuro Psychologist would be a good choice at this point.
Yes, I do have damage to my brain and TN nerve from repetitive abuse.
Weather is a trigger to,
I am on a whole for diet and I meditate. It all helps. Some.
However, when I am dealing with particularly nasty things in processing, pain jumps up.
So since I am the common denominator of all the failed doctors, have to try something else for a different out come.
I hope this helps.
Moderator - Depression
"...when the gift of sight is cause enough for jubilation."
Billy Collins from the poem. HIGH
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;