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I've had a chronic headache for over 5 years that is unresponsive to all treatments. Any advice?

Posted , 4 users are following.

scott25893
scott25893

I'm a 53 year old male that has exhausted all known avenues in pursuit of relief from head pain following a fall, after a total loss of conciousness, resulting in a skull fracture and cerebral hemorrhage.

The only ray of light is consesus by two neuro docs that it seems I might have CSF. However, as no evidence of such a diagnosis is indicated by tests or scans, they also are in consensus that justification for following protocol for locating the potential leak is difficult to provide.

I would appreciate learning accounts from anyone who has or had a similar condition. I'm also open to any advice, guidance or inquiry.

0 likes, 5 replies

5 Replies

  • diane90622
    diane90622 scott25893

    Posted

    Hi Scott I can empathize with you, I'm in similar position, I fractured my skull when I was 13. I'm 54 now but 8 years ago I fell downstairs hitting my head off both walls. Stupidly I didn't go too hospital I was on my own. Went into work and the boss got me too get checked out. I only started getting some answers from doc's a couple of months ago. Had mri scan had too see a doctor for results which he said not early signs of dementia or Parkinson's. But wanted more base line tests that was back in August. Still waiting was diagnosed with fibromyalgia then menieres I have short term memory loss which is frustrating.I'm sorry I'm not off much help, but do hope you get some answers and relief.
  • shari69018
    shari69018 scott25893

    Posted

    Scott, 35 years ago I was in n car accident and I reached to help son and when I turned my body I permently damaged my body and terrible migraines started thereafter.  I have RSD. And you can google that.  I think it all goes together.  I have the one sided headache and then the top of my head gets so tender I can rely touching.  I too have short term memory problems.   I go to say something and it does not come to me.  Also, I have them almost daily with nausea as well.  Vision is a problem.  I had a brain scan as Parkinsons is in my family for three generations now.  Three sibs have it so I wanted to rule out that as sometimes I have jumping in arms and legs.  You seem to have a similar problem and I pray they find out what it is.
    • scott25893
      scott25893 shari69018

      Posted

      Shari, Thanks for kindly replying and sharing your story. I also have been through the Parkensons routine as my late grandfather developed it in his mid-fifties. But the docs concurr that the disease is not indicated although the symptoms are somewhat consistent with an early inset.

      Bottom line is none of this occurred before the fall and the symptoms have steadily progresed ever since.

      Interesting point though is that the top of my head feels like it's going to explode from the presssure, it is not sensitive to touch.

      My vision remains in decline to the point I have to be outfitted with updated corrrective vision approximately every 6-8 months. Went through the full diabetic regiment to see if that could yield any clues, but my blood sugar and insulin levels are s they should be.

      Nausea also is in the mix, so I had CT, MRI, colonoscopy and upper GI. Happy to say all these nether-regions checked up fine too -- even though my stomach is on fire 24/7. Bowels are normal, but I dry heave regularly for no particular reason.

      Thanks for the RSD lead and your prayers. I shall research it and likewise pray for your recovery.

      Please feel free to keep me up to date on what you find. I will do the same if you're up to hearing about it.

  • shari69018
    shari69018 scott25893

    Posted

    Scott enjoyed your email and yes let's keep in touch by emails.  I purchased that cranial cap that you are to free and then they are to stay cold.  They do not work, sent back.  They have recently started prescribing generic for Middrid?  Cannot spell it.  It words some but I till must take generic of Lortab which some frown on but it is the only thing that can get me out of bed.

    they say exercise but when your he'd is brushing with pain and when you try to do things, you lose your cookies.  So I jut keep ice on my neck and wrap around head.  I have started loin gym hair like a Male pattern baldness so it is off to the dermatologist for a look see.  I am beginning to hate doctors, really I do not mean this hate but I am quite tired of it all.

    keep in touch and we I'll compare.  I hope you have a free headache day

    • scott25893
      scott25893 shari69018

      Posted

      Shari, sorry to report that this was a really bad day for the old noggin. I've experimented with both hot and cold therapies. No effect either way. All my docs over all this time have prescribed Lortab and ever upwards into other opiates. No response whatsoever other than the rest of me gets kind of loose. The pain is so relentless, and progressive, that I literally begged my last neuro for a lobotamy. After all, everyone and everything says I'm fine, so why not take an invasive journey through my head to root out anything that could be leading me to be crazy?

      I can associate with your attiude towards docs. I approximate the thickness of my charts and records to be in the two foot range. The thing I find particularly annoying is when one doc refers me to another and I subsequenlty return to the referring doc with the other doc's analysis and recommendations, he has forgotten me and wants to know why I saw the other guy.

      The shameful part is that I realize there are those who live with even more devastating pain than mine. Especially folks on morphine pumps. I've known a couple of terminally ill people that have given up on pushing the button on the pump. They say they would rather be here in pain instead of in the clouds and of no use to anyone.

      Thanks for holding out hope for me. However, I'm afraid I've lost it.

      When you say that you hope I had a hedache free day I can only return the gesture in that I hope the same for you. So I suppose all isn't truly lost...

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