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Bad pounding ears, wierd headache and feeling sick

Posted , 3 users are following.

Susie_T
Susie_T

I was diagnosed with IIH a few years back but have had no surgery and just basically got on with it and lived with it.

Lately though my ears have been "pounding" really badly - especially at night when I am trying to get to sleep, and first thing in the morning.

My head feels compressed and I feel like i have a lot of pressure all around my head and between my ears.  Also I have started feeling very sick in the mornings.

When I am on the phone, i find it very hard/sensitive when someone speaks on the other end of the phone, and feel like they are going to blow my ears out!

Is this the type of symptons for IIH?  I feel very irritable lately and feel I am also struggling to hear people due to the pounding and sensitivy in my ears.  My eye sight seems to be deteriorating too.

Any help/advice would be very much appreicated

Thank you

0 likes, 8 replies

8 Replies

  • VDubsTDi
    VDubsTDi Susie_T

    Posted

    Have they tried you on diamox?

    Do you know what your pressure was when they did the lumber puncher?

    Are you on Facebook?

    Where abouts are you?

    By the way everything your saying is very iih x

    • Susie_T
      Susie_T VDubsTDi

      Posted

      Hi.

      Thanks for the reply.

      They haven't tried me on anything as it's only just started to get the better of me!! And I think I need to go to the doctors now.... Not now now, just make an appointment to get it sorted.

      Have not had any lumber puncher.

      Yes am on Facebook and am in the UK/Bedfordshire

    • hollygb66
      hollygb66 Susie_T

      Posted

      There are FB pages for this sort of stuff. I'm on a CSF LEAK page. My problems have been the opposite of your's. I'm now thinking the "leak" is sealed and I have a little bit of hp that you're dealing with, but not near as bad.

       

  • hollygb66
    hollygb66 Susie_T

    Posted

    Sounds like you really need to have an MRI and possible have some CSF drained off of your brain. Have you been to a neuro? I would see about visiting a neuroradilologist instead of a normal neuro. They can do the tests and perform the draining off of fluid.  Also, have your opening pressure checked. That's my opinion.

     

    • Susie_T
      Susie_T hollygb66

      Posted

      Thanks holly

      I'm not allowed any radiotherapy though. Is that what a neuroradilologist does?

      Will have a look on Facebook

    • hollygb66
      hollygb66 Susie_T

      Posted

      A neuroradiologist can do a lumbar puncture, check your opening pressure to see if it's high (or low), and drain some fluid off. 

      However, what VDubeTD said, you can ask for Diamox and gabapentin. I'm on both of those!! That's the easy way first. It's the "band-aid" but not necessarily the "fix" for it. Would be good if they figured out WHY your pressure is high. 

    • VDubsTDi
      VDubsTDi hollygb66

      Posted

      i normally say that they can't give you a diagnosis of Intracranial Hypertension without a lumber punch or an icp bolt (but that's surgery) but sometimes it can show up on a ct scan. Southampton has a new bit of equipment that can test.

      Did you know that the reason they give us gabapentin is because it's cheaper than pregabalin. Pregabalin has a mood stabiliser in it as well.

      I'm finding vaping CBD is helping me onto off all my meds.

      Anyway susie go see your go and get referred to a neurologist or go into a&e and beg for a lumber puncher

  • VDubsTDi
    VDubsTDi Susie_T

    Posted

    I'm lucinda Sara tether on Facebook add me and i can then respond faster. 

    A ct scan or mri scan might not show up anything only way to really test for Intracranial Hypertension is a lumber puncher unless you have major head  trauma or illness like hydrocephalus. 

    Diamox is the drug they start most people on and for pain maybe try asking for gabapentin or pregabalin. Both are neuropathic pain meds

    i run Facebook groups and help loads of people so come find me

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