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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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  • Weezie
    Weezie

    Posted

    I have Tmj and my jaws locks and often hurts after eating tough food like beef jerky. I never had the symptoms that you have. I also have the ear problem with clicking when I swallow. This often leads to vertigo which you don't seem to have either. Hope u find what is causing this.
  • Jlivin617
    Jlivin617

    Posted

    Scottio19 please let us know if they eventually have a proper diagnoses because everything you explained has and is currently happening to me. I have had blood test, EKG,sleep study, seen ent doctor and MRI. Still no diagnoses.
  • Jlivin617
    Jlivin617

    Posted

    That ndph is the closes thing I have found to all of my symptoms.
    • Torres1105
      Torres1105 Jlivin617

      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

  • simon19404
    simon19404

    Posted

    I'm really sorry to hear you're suffering in this way.

    Does any pain killer help?

    I have just started getting an all day type pressure headache. I've had it for about 2 weeks and felt it was getting better but sadly it's returned.

    I have a feeling of pressure, heavy head, fullness in ears. Sometimes it's worse than others and sometimes I get some rest bite from it. It is also accompanied with a sense of dizziness. Not spinning but dizziness from the centre of my head and sometimes behind my eyes.

    I'm normally healthy but have had gastritis recently which was treated with a months worth of a PPI. This gave me terrible side effects. I've been clear of this medication for 3 weeks now.

    Anyone else experience this?

    • Torres1105
      Torres1105 simon19404

      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

    I'll keep you all updated.

    I've to go for a lumbar puncture in a few weeks to see if that shows anything.

    • 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

  • Kelly-Sue
    Kelly-Sue scottio19

    Posted

    So did you ever get a diagnosis? I too have the exact same feeling. Have done every test imaginable and all I get is Dr's telling me a have migrains...Migrains don't last 24/7 for 6 months straight..
    • scottio19
      scottio19 Kelly-Sue

      Posted

      Hi Kelly, no further forward sadly. 

      Its now now been a year I've been dealing with this and all I've been told is its daily Persistant headache with no secondary cause. Upped my dose of medication as the headache became quite bad again a month or two ago and it's starting to make a difference now.

      i might head down the ENT route now because this can't be nothing, because my MRI, CT and LP results were normal it seems the Neuros have left it at that.

      sorry it's not the answe you were looking for.

    • Torres1105
      Torres1105 Kelly-Sue

      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

  • paul83540
    paul83540 scottio19

    Posted

    Hey Scottio - Any updates?

    Im going through something similar - i had a bout of it about 10 months ago and after getting ct and mri the doc eventually said it was a combination of migraines and sinusitis. Gave me Maxalt and it seem to help.

    2 weeks ago it started again. Symptoms are similar but including symptoms from temporal arteritis - im not yet 40 though...  going to get another mri today..

    • Torres1105
      Torres1105 paul83540

      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

  • richard40461
    richard40461 scottio19

    Posted

    Hi Scottio

    I have been suffering with the same symptoms you describe for the past 10 months and, like you, have been down the route of MRI scan etc but without a resolution. The start of the headaches coincided with a vitreous detachment but everyone tells me there is no connection.

    I feel lousy most of the time but I realise I have to get on with my life but it's proving very difficult. How I wish this horrible feeling would go away.

    • scottio19
      scottio19 richard40461

      Posted

      Hi Richard,

      sorry you too are dealing with this, I guess the main thing is it's not life threatening but still it's life altering. 

      Amitriptyline ne is the only thing that dulls this down and at the minute I'm pressure free but I know it will be back as I keep having to up my dose. 

      Im im dealing with something else right now regarding my stomach but I'm pretty sure it's not connected to the headache situation.

    • TheRoyalGeek
      TheRoyalGeek scottio19

      Posted

      How are you on Amitriptyline? My doctor prescribed me but the side effects scare me. 
    • Torres1105
      Torres1105 richard40461

      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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