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Chronic Daily Headache Sufferer for 17 Years - feeling hopeless

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Craiger5000
Craiger5000

Up until about 17 years ago, I had never really experienced a "headache" of any form so I couldn't really appreciate how significantly it could impact someone's life.  Since they started, my headaches, based on everything I've researched and been told, are in the 'tension type' category.  However, although I do experience symptoms that would fall into that category, I often experience much, much more.  I wake up EVERY morning with a headache and it continues all day, every day until I go to sleep (which takes a while because, you guessed it, I have a headache).  In addition to the vice-like grip I feel on the sides and the back of my head all day, I also feel dizzy, irritable, sensitive to sound and light, and at times confused and searching for the proper words to use in my sentences. My short-term memeory is inconsistent at best which really scares me. When trying to hold eye contact during a conversation it hurts so bad I wnat to tear up. Further, I get these spasms that shoot up my neck and grab the back of my skull and cause it to twitch to the side (has anyone ever feltsomething like this?? scares me a lot), completely involuntarily.  It almost feels like a tuning fork sensation travelling across the back of my head - happens several times a day!  Put bluntly, it's torture and it seems to have no end.  I have had 3 MRI's, CAT Scans, Blood tests, and tried every type of therapy and gimmick imaginable.  All tests come back - "normal".  The suffering I feel is anyhting BUT "normal".  I've visited every type of doctor but nobody seems to be able to explain why it is I feel what I feel.  They all have theories, but never answers.  It is so frustrating.  Tracing back to where it all began can be problematic as I was finishing a brief career in Junior hockey (during which I sustained at least 2 concussions that I know of) and starting to work a desk job which has me sitting in a  very unhealthy position for most of the day.  Is it concussion related or is it my neck jutting forward as I sit in front of a computer?  I can't say for certian that it's either, or perhaps a combination of both. Apparently nobody can. I've had doctors tell me it's my posture, weak neck muscles, stress, depression, diet, not enough water....you name it.  Problem is, I'm extremely active, eat well and drink a ton of water every day and furthermore, weak neck muscles shouldn't make me feel dizzy and confused (I don't believe so anyways). I'm amazed I`m abale to funtion to the level that i do, however i feel that pushing through the constant pain every day is taking its toll on me physically and mentally.  Simpe tasks are feeling larger and larger.   I'm at my wits end here.  Hopeless doesn't even begin to describe how I feel when each morning arrives and another pressurized, spasming, tight-banded headache awaits me.  I guess I'm writing on this forum with a faint hope that someone out there can offer some advice or perhaps even shed some light on their own similar experiences so that I can gain some insight on what may be causing this.  Any ideas are welcome and sincerely appreciated.  Thanks for reading this. 

0 likes, 17 replies

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  • Hollyberry
    Hollyberry Craiger5000

    Posted

    The dizziness, light sensitivity, confusion, you experience I can identify with. Mine is caused by food allergies and the smallest amount can set me off. I first noticed this about 35 years ago and over the years the stuff that sets me off has increased and the amounts needed have decreased.

    for example, the first thing I noticed was instant coffee, in my 20s. I could drink ground coffee ok but instant coffee was like taking a drug-- I couldn't concentrate, or work out who was speaking if I was in a group, I'd be totally incapable of driving a car safely, and then the headache would kick in and last for hours. Over the years I've become allergic to / intolerant of all alcohol, chocolate, spices, pineapple, ginger--- had such a dreadful reaction to a small piece of dried pineapple I was taking to A&E. One tiny piece of chocolate last week ( seemed like a good idea at the time) made me dizzy, unstable on my feet, flashing lights, nauseous.

    A starting point might be a food diary. Say for a week to give you an idea of what you eat in a day, include everything you drink too. Write each day a detailed account of headache too.

    Then try a " clean" diet for a week. It's boring but rice, chicken or white fish and one green vegetable plus a root vegetable. Plain porridge for breakfast.   Your 3rd meal would have to be plain potato with vegetables. Drink water only. You need to have 2 weeks of this really to allow for any headaches that are caffeine withdrawal. If it makes a difference to the headaches, you know it's food and/ or drinks.

    Other ideas might be a thorough dental check up-- been people here had headaches due to dental problems.

    maybe a chiropractor to check your back, shoulders and neck.

     

    • Craiger5000
      Craiger5000 Hollyberry

      Posted

      Thank you for taking the time to comment on my post.  I have thought about revisiting the diet angle as I'm running out of other avenues.  I'm just not sure where to even start.  Your suggestions seem like a good starting point so i'll try that out.  2 weeks "clean" will at least help me rule some things out, or highlight some headache triggers.  Did your allergies/intolerances develop later in life or have you always had them in some form?
    • Hollyberry
      Hollyberry Craiger5000

      Posted

      The coffee started in my 20s, and all the rest started later. Years ago. Was a chocoholic , can't touch tiniest amount now. I thought I was just intolerant of things but seeing a consultant over an eye problem he asked if I had a lot of allergies as damage in my eye suggested allergies. 

      I eat a very boring diet but it keeps the migraines away. 

  • laura_40379
    laura_40379 Craiger5000

    Posted

    Hi you have just described my tension headaches completely, I have no idea how you have managed for 17 years I have done four week's and want to die, I have no live what so ever and today I'm going to let it all out to the gp in the hope they start me on preventative medication so far they have done nothing for me and left me in terrible pain which is now starting to affect my sleep because Im having terrible dreams of pain that I wake up from, I have been seeing a chiropractor who thinks it may have all started when I slept up right but so far their treatment has done nothing for me, the only thing that helps is meditation which reduces the pain for a short while, hope you are feeling better soon it's completely depressing and debilitating
    • Craiger5000
      Craiger5000 laura_40379

      Posted

      Thank you for taking the time to comment on my post.  I am sorry to hear that you are experiencing similar headache issues.  I wouldn't wish this on my worst enemy.  I have gone the medication route, but to no avail.  In most cases, the side effects made me feel worse, just in a different way.  If yours started suddenly, then tracing the cause should be easier to do (hopefully).  Mine came on gradually so tracing the origin has been quite difficult.  I'm going to try some meditation as even some temporary relief would be a god send. How did you learn to practice meditation? Thank you for the tip.  
    • laura_40379
      laura_40379 Craiger5000

      Posted

      Hi just be careful I have had one doctor tell me to take the pain killers for six weeks, today I have had another tell me to stop immediately as I likely having rebound headaches and have made it worse, I suggested that they start me on preventative medication or I would have been left with nothing which would of mean I would be stuck with a pain score of 10/10 all the time, it's not like I took the pain killers for no reason, I'm really scared of what is awaiting me now, I started meditation at the end of yoga which is now impossible to do put thank goodness I have had some practice as the more you practice the better you get, I would just Google and find out what works for you
    • Craiger5000
      Craiger5000 laura_40379

      Posted

      Thank you kindly for the suggestion, I will research more on meditation.  Have you tried acupunture?  I have found some mild (and very temporary relief) from the pain through that treatment.  It only works for the pain however, other symptoms still prevail but it might be worth a try. Your situation sounds very hard.  
    • laura_40379
      laura_40379 Craiger5000

      Posted

      Thanks I think acupuncture will be the next thing to try, I'm going to try some meditation now because I just feel terrified at the minute I have also come back from the chiropractor and that seems to stir things up a bit
    • laura_40379
      laura_40379

      Posted

      Also forgot to mention keep a diary and drink camomile tea maybe before or after meditation, put some honey in through it tastes a bit bad otherwise
    • Craiger5000
      Craiger5000 laura_40379

      Posted

      Ok will give that a try.  I am a coffee drinker (2 cups every am) so kicking that habit will be tough, but worth a shot to try some tea as an alterative.
  • tony67143
    tony67143 Craiger5000

    Posted

    i use histamine desensitization to control my headaches.   my story is much like yours, all the tests and scans came up normal and drugs perscribed offering little or no relief(sometimes they seemed to make things worse).  finally through my sister, i was put in touch with a russian doctor who has been persecuted by the canadian government for offering this treatment.  he is convinced that the pharmaceutical companies are actively trying to discredit histamine therapy as 1/3 of all over the counter sales of drugs are either antihistamine or antacids and the companies could not survive if they were to lose this income.  so it is that doctors will not tell you, do not know or are not taught that "tension" or "vascular" headaches(totally inappropriate terms)are caused by excess production of histamine in your mast cells.  injection of dilute pharmaceutical histamine into the subcutaneous membrane allows your mast cells to deal with the histamine at souce and can have a therapeutic effect.  this is sort of a homeopathic treatment(lol homeopathy, our allopathic medical systems enemy number 1), but where homeopaths deal in millionths, my solution of histamine is more like 1:15.  i inject myself twice a week and have not had a headache in over a year.  i still have to watch what i eat and get aches and pains occasionally but my energy levels are way up and i can actually go back to work now.

    the really awful thing about this mast cell thing is that is also at the core of problems like asthma and according to this doctor could be given to children and free them from a life of endless inhalers and fear of sudden death.

    • Craiger5000
      Craiger5000 tony67143

      Posted

      Thank you for taking the time to comment on my post.  What led you to try histamine desensitizing methods?  You say your story in terms of symptoms is much like mine.  Can you be more specific as to what were the main symptoms you sufferred from?
    • tony67143
      tony67143 Craiger5000

      Posted

      for me the symptoms built up very slowly over many years.  like you, i considered myself as a person who did not get headaches.  then when i was about 27, one day out of the blue i got a screaming headache that was more painful than anything i had ever experienced.  it lasted about 15 minutes, went away and didn't come back. then about a year later it happened again.

      it was spring time so i thought it might be related to seasonal allergies.  i started taking antihistamines and they seemed to do the trick for a few years, i just made sure that i kept myself dosed up with antihistamines during hayfever season and everything seemed fine(everything was not fine, i was just not listening to my body, i was begining to behave irrationally and having trouble finding words, having dizzy spells and low energy levels).  at this stage it was still a seasonal thing, would come during the spring time then go away.  and it was like that for about 15 years until about 7-8 years ago when the headaches stretched on right through summer, and when i found myself at the pharmacy buying antihistamies in december i realised something must be terribly wrong.

      my main and most serious symptom is cluster headaches, they are completely debilitating. they usually start with a pain in the roof of my mouth, then my neck muscles start to tense up and sometimes a pain in my right shoulder, then the pain starts in my right temple, it feels like somebody drilling a hole in the side of my head then dousing it with acid and poking broken glass around inside my head.  when not having a full-blown headache other symptoms include lack of appetite, dizziness, confusion(brain fog), low blood pressure, fainting, huge mood swings and general chronic depression. also rashes and shooting pains that can envelope half of my body(these usually pass quite quickly), also joint pain especially in the right knee.

      i have been doing histamine desensitization for about 14 months now and have not had one full-blown headache.  sometimes i feel the processes of the headache happening(the halo), but it never escallates to the full thing and can normally be attributed to something i ate(tomatoes, yeasty bread,cured meats). the main thing is i can eat a lot more now, i am 1.87 meters tall and was down to 54 kilos(that's 6'1" and 118lbs in old money). i am now back up to 70 kilos and rising smile

      a brief note on coffee...i always found it to be very good for me and even to mitigate the symptoms.  if i had a strong coffee when i felt the halo coming on sometimes the headache would be less strong and shorter.  i also read that one sufferer had been prescribed by a doctor to do the same.

      i really think you should try this, you need to call all the allergists in your area and see if they will do it.  there is no reason they shouldn't, they have the pharmaceutical histamine in stock as it is the substance they use as a control when doing the allergy prick tests.  the problem is that it is a treatment that has fallen out of practice and the pharmaceutical companies are adamantly against the use of it.  they say that the danger of anaphylaxis is too high, but in truth it is about 1 in a million.  so long as you take your first injection in the doctors office everything should be fine.

      i hope this helps

    • Craiger5000
      Craiger5000 tony67143

      Posted

      Wow, your experience sounds incredibly painful.  I'm glad to hear that you found an avenue for relief.  Even though I have spoken with every type of doctor imginable, I never considered an allergist.  After hearing your story, I think I should, if only to rule things out.  Thanks for sharing. Good luck in your continued quest of battling this heavily underrated condition!
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