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What Type Of Headache Is This?

Posted , 19 users are following.

scottio19
scottio19

My story began just over 6 months ago where I was watching TV in bed and I got the strangest feeling and my eyes went all funny and I couldn't focus on anything, I had to take off my glasses and just lie down and try to go to sleep. I thought nothing of it until I awoke the next day with the strangest 'foggy' feeling in my head like I was walking about in a daze, then came the pressure in my head that wouldn't shift.... Straight away I was terrified and thought something was seriously wrong but my fiancée put it down to tension headache (never had a headache in my 26 years on this planet).

A few days later and it was no better so I went to GP who thought it was a sinus problem sinusitis. Got a week dose of antibiotics (amoxicillin) and a steroid nasal spray...did nothing! By this point I was in a state my head, the pressure would just be crippling to the point I was close to tears. I was googling things at work and kept seeing 'tumor' which made things unbearable. I went to out of hours at the hospital where I was told migraines and fobbed off with more cocodomol and told it wasn't my sinuses (I did have a constant blocked nose for 2 months but it had cleared and I felt no mucus since).

2 days later my GP sent me for a CT scan at the hospital but on arriving I saw the neouro doctor who done some tests, blood ect and said I was fine and sent me on my way. Again I was in bits. The next night I checked my self into hospital where I spent overnight and got CT scan next day along with more bloods, ECG ect. Everything ok.

Last week I finally got an MRI with contrast which today I was called to say it was normal and I'm due to see my headache specialist again on Thursday (this is all private so it's cost me a fortune, the NHS is terrible so had no choice).

I've had eye exam

CT of brain

ENT hearing test

Bloods

ECG

MRI with contrast

Passed the doctors neuro tests.

The lightheadness is a killer and sometimes it's really hard being out and about as I feel out of it all the time, then the buzzing in my head drives me crazy at night....all this on top of a frontal pressure headache that never let's up ( scalp is also very sensitive).

I was nervous to post on here earlier before I had an mri incase something was found but now I have it my doctor tells me I have NDPH. I'm not sure what that means and I don't understand how someone with no previous head or ear for that matter problems can suddenly be plagued like this with never ending symptoms?

My ears feel full all the time and crunch but ENT had a loom and said they were fine, been on antibiotics and no difference. My head feels heavy and scalp is really sensitive. Jaw clicks sometimes but no pain.

Is this tmj? Is this ever going to go away?

0 likes, 40 replies

40 Replies

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  • richard40461
    richard40461 scottio19

    Posted

    I tried amitryptilyne but it doesn't seem to help, unfortunately.

    I'm getting a few neck pains now but I'm not sure if there's any connection. Off on holiday for a couple of weeks tomorrow so will go back to my GP when I return if it doesn't go away.

  • sadlilfish
    sadlilfish scottio19

    Posted

    Hi Scottio19, I have the same exact symtoms as you do. Mine started a month ago, and I have tried everything to figure out what's causing this but no luck. Did long blood tests, two mri s. They actually found vitamin deficiencies in my blood which i took care of. A tiny cyct in my pituary glad came up in my mri which is apparently common and woudnt cause this headache. I also have stomach problems as well, and got my stomach checked, but the doctors say that it is not relevant to my headache. I am only 24, but I'm kinda falling apart.  Anyway, all I want to know is why this headache is happening. My headache gets so bad sometimes, I can't leave the house for days. 

    Have you figured out the cause of your headache? Hope you're feeling better. 

    • paul83540
      paul83540 sadlilfish

      Posted

      Hey guys - so my headaches have subsided after a combination of things. Firstly I started taking sudoephadrine (sudafed) to help with any potential sinisitus even though i never felt i was congested or had a running nose etc. I also when to the optomotetrist and got some reading glasses. I changed a light which was flickering in the lounge room where i spend a fair few hours watching tv reading etc.  I also cut down on playing clash of clans - previously i was playing it till 2 am in the morning just before bed. I read that you should not use an ipad or a laptop at least an hour before bed. You have a harder time sleeping or something. I also went to a chiropractor who gave me neck excercises to do 2-3 times a day whilst im at my desk at work.

      I don;t know if any or all of these helped but I had pretty bad headaches for about a month but now they are barley noticable.

      hope it helps!

    • Torres1105
      Torres1105 sadlilfish

      Posted

      Hey any update on your illness? Please respond and tell me how you are feeling now?
    • Torres1105
      Torres1105 sadlilfish

      Posted

      Hi,

      Are you still feeling the same any update on the illness? Has anything helped? I find myself in the same boat, I'm only 26 but I want to treat this asap to continue with my life rolleyes please share your experience with me sad

  • scottio19
    scottio19

    Posted

    Well an update on things up till now.

    I have tried a chiropractor and acupuncture to no real benefit, I am still taking the amitriptyline (50mg once a day) which does seem to keep the pressure, dizziness and pain at bay for the most part. Right now I can feel it very dull and light so I’m not sure if it will just pass in a few days or go on to be the start of a bad episode which can last weeks.

    If I want anymore investigations it will have to be private as the NHS is done with me by the sounds of it… the CT scan, MRI, Lumbar Puncture, ENT visit and various other things have all come up with nothing out of the ordinary so I’m left in limbo.

    So since October 2013 this head issue has still not been diagnosed or a cause found, I have done research online for what seems forever and in the main it seems hundreds of people are in the same boat and don’t have much answers either.

    I don’t want to be on medication at my age (28) for the rest of my days but I need to find out what this is and a cause.

    • kev49522
      kev49522 scottio19

      Posted

      Scottio19, I had the same problem as you around 3 years ago the same heavy head symptoms and terrible headaches. I went to the Neurologist and to my primary Dr and they all said I was fine, nothing to worry about. Well I went to the hospital atleast like 10 times they did

      Blood work

      Ct scan

      MRI

      NEURO TEST

      And all they found was a cyst but they said that wasn't the problem that most people have em and don't even know.

      Eventually after like 5 months they prescribed me amitripilyn 50mg and that helped me a lot.

      Until lately that I've been once again experimenting the same symptoms as before..

      I hope everything turns out for the best to you

    • TheRoyalGeek
      TheRoyalGeek kev49522

      Posted

      My MRI of my jaw found a cyst on the back of my neck and I asked my doctor if that could be the cause and he said no....so no idea. 
    • Torres1105
      Torres1105 scottio19

      Posted

      Hi,

      Are you still feeling the same any update on the illness? Has anything helped? I find myself in the same boat, I'm only 26 but I want to treat this asap to continue with my life rolleyes please share your experience with me sad

  • scottio19
    scottio19

    Posted

    Thanks Kev.

    Your situation seems to be a mirror image of my own by the sounds of it.

    ive been on the tablets for well over a year now and on 50mgs for about 4 months. Last vist to Neuro he wanted me to come off them because he said at my age (28) I shouldn't be on any long term meds. I don't really want to as I know how bad my head felt before these tablets started to work.

    I'll keep plugging along in hope of some sort of answer for what's going on with me.

    • kev49522
      kev49522 scottio19

      Posted

      Over a week now I've been experimenting the same problem all over again, now I don't really know if I should go back to the Drs and be told that everything is fine. I'm taking my amitripilyn again, I really hope This gets me good again. It is difficult to go throughout daily activities feeling like This. I hope your doing better
  • freddywmla
    freddywmla scottio19

    Posted

    Hi guys:

    I have also had a horrible heavy head feeling and a very stiff neck for the past 12 years and no physician has a single clue about what is wrong. I have done all imaginable tests and took most of the known anti-depressants to no help. Many of these have already affected me badly, especially fluoxetine and rivotril. I have visited a chiro a couple of times and nothing seems to change. I recently did a neck scan which revealed some contracted neck muscles but the kinetherapist who was supposed to be the magic-fixer ended up with no results. I have now been prescribed amytraptyline, which I kinda remember to have taken a few years ago without any changes and I'm so afraid to take it again as a result of it's very appaling longterm effects. I have no concentration, can't be myself around other people, always panicking and sad.

    Did any of you guys do a neck cervical or celebral scan? Contracted neck muscles or bones might account to something, maybe! Did anyone try any kind of therapy or meds for this?  

  • sunct7
    sunct7 scottio19

    Posted

    I have been diagnosed with sunct - a type of cluster headache which I had never heard of before. You must see a neurologist at a teaching hospital because they are the most up-to-date. Good luck!
  • ohreals
    ohreals scottio19

    Posted

    Hi All, I feel that I may be in this type of headache category as well, so I wanted to send out a reply. All started with what I think was a sinus infection 6 months ago, took some antibiotics and that cleared up the fever and chills that I had, but the headache has stuck around ever since (so 6 months now). I'm 26 and have never had any headache issues in the past.

    Had a CT scan, MRI with contrast, numerous blood tests and recently tried acupuncture (1 appt, made things worse so far). No drug has helped so far either. I did have joint pain, but took some steroids and it went away immediately and for good.

    My headache can be decribed as a constant cloudy, heavy, with mild to moderate pain/pressure. Key word is constant, never has gone away. It is also worst in the mornings (feel like I wake up with a hangover).

    Oh and alcohol definitely makes everything worse.

    I'll send word if I find anything that helps. Hope everyone gets better soon!

    • Torres1105
      Torres1105 ohreals

      Posted

      Hi,

      Are you still feeling the same any update on the illness? Has anything helped? I find myself in the same boat, I'm only 26 but I want to treat this asap to continue with my life rolleyes please share your experience with me sad

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