1. Community
  2. Brain and nerves
  3. Idiopathic Intracranial Hypertension

Is this IIH?

Posted , 4 users are following.

dmi
dmi

ive been experiencing some strange symptoms for the last year and would just like to know if people think this is IIH.

i have a painless head throbbing thats in sync with my heartbeat, which goes all the way around from above my eyebrows to the back of my head. it isnt a headache - more like a throbbing, as if i can feel the blood pumping around my head. the strange thing is i only feel it when im sitting still. if i move any body part the throbbing dissappears, as if the blood flow is being disprupted. but if i clench my fist or bend any limb really tight the pressure worsens. if i put mild pressure on any blood vessel (hand, foot doesnt matter) the throbbing eases.

I have constant tinnitus in both ears that manifests as a hissing or ringing. the pitch and loudness changes with head movements. i also have pulsatile tinnitus in sync with my heartbeat which comes on occassionaly.

I get mild dizziness and nausea occassionally that feels like vertigo but not that severe. sometimes i find the nausea is eased by certain head movements.

finally i get sore eyes occassionally but only when reading, and my temples feel quite tender to touch.

I have had an MRI of brain/ears, blood tests, an examination by an ENT doctor and no problems were found. Blood pressure is also normal.

I am a 30 year old male with no other significant health problems and am of normal weight. currently waiting to see a neurologist

1 like, 4 replies

4 Replies

  • VDubsTDi
    VDubsTDi dmi

    Posted

    How is your vision? I'd go get your eyes tested. 

    The only way you will know if you have IIH is if you have a lumber puncher. 

    At at first I was thinking it was going to be your blood pressure and tention headaches but i have no clue with you. 

    IIH is rare 1in every 100000 people but most are women so you are rare rare if you do have IIH. 

    are you on twitter or Facebook 

    • russ151
      russ151 VDubsTDi

      Posted

      Hi hope all is well I have had something been going on for about 4 months actually maybe longer than I had a really bad sinus infection after struggled with sleep then started getting pressure building on the left side of my head at the back this would violently awake me and cause me a panic attack I also started to develop seizures joint pains muscle ache and spasms in my head along with a bladder problems going frequently i went down to a nd e on a few occasions all down one side of the left side of my body they turned me away after just doing normal tests 

      As this was ongoing I never got any refreshment in sleep and feels like my brain doesn't shut down I went to see a neurologist at this time I was having sensitivity to light sounds and headaches where what seemed like migraines I had blurry vision aswell had MRI was fine just a small benign cyst which he said is nothing to worry about he diagnosed me with servere migraines and put me on propapanal thing is everything has calmed down don't get any joint pains seizures just left with dull throbbing sensation on the same side where it started still no real sleep and bladder problems and blurry vision I have also noticed a hissing sound more and I hear my pulse when my head presses the pillow and a fast clicking sound on my right ear I have had my eyes tested twice once when I was having a really bad vision yet they said was perfectly fine it's all puzzling me If it was migraines surley I would get a break from this although things are better I used to go to gym but have no energy I have tryed but my head didn't feel good so lasted 5 mins I feel exhausted a lot now and have lost my job I just wondered what your take would be on this ?really worried I just don't feel the same person anymore

  • russ151
    russ151 dmi

    Posted

    Hi just wondered how you got with your condition did you get diagnosed just I am having very similar symptoms especially throbbing on one side of head.

    Thanks russ

  • susan84872
    susan84872 dmi

    Posted

    It sounds very similar to my problem, the painless throbbing that happens when I lie down and is bad at night, mostly goes away after I'm up.  I don't feel well for a couple of hours in the morning, tinnitus and feelings woozy and light headed, no energy.  I have had BPV for years, get dizzy if I roll over fast or move fast, etc.  I'm wondering if I have IIH because I have had an MRI, MRA, seen a neurologist, an ENT doctor and a cardiologist and they can find nothing wrong.  But I feel lousy.  I am starting to have headaches now, that last a few days on and off and don't go away with Advil or Tylenol.  I don't know where to go next - another neurologist maybe.............
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.