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Could this be intercranial hypertension or something else ?help

Posted , 3 users are following.

russ151
russ151

Hi can anyone help to figure out some of my symptoms I have been suffering 

About 3 months ago I had a sinus infection and never recovered after I had terrible like pressure building up in the left side of my head which would happen more at night or basically when I would lie down i also when my ears touch the pillow I here my pulse and on the right ear only when I press against the pillow a clicking noise I would later develop sensitivity to bright lights sounds and smells.

I made 3 trips to a and e with the pressure building in my head on the last occasion it affected the left side of my body they just sent me away 

I payed private for a neurologist did MRI on brain came back fine he diagnosed me with severe migraines and put me on propapnol these have calmed the symptoms but I am worried as I am still left with a dull pulsating on the left side and have a bit of blurred vision suffer a lot with fatigue and when I try to exercise it kind makes my head

 worse and I have noticed pain in my neck and shoulder on the left side had my eyes tested but said they where fine .

The thing is I am left with is like a dull pulsating on the left side with still sensitivity to light no energy I am not sure if this is chronic migraines just wondered of anyone had any ideas to what it could be I have been better since taking the medication but it worrying that it's kind of still there I also have irratable bladder and ibs and have been referred to a chronic fatigue clinic but I don't think that is the cause of my fatigue

0 likes, 10 replies

10 Replies

  • tanya19088
    tanya19088 russ151

    Posted

    Hi

    sorry to hear that you are still not feeling good.

    have you had your eyes tested? I kept going to the GP with bad headaches, distorted vision, I even told her that when I first woke in the mornings I was blind m one eye for about 10 seconds but the vision got better when I sat up and all they did was say it was migraine and put me on stronge and stronger tablets.  I took matters into my own hands and went to have an eye test.  I can't thank Specsavers enough! I was told I had swelling on my optic disc and must go to the hospital straight away.  There I was seen in the eye department and they got straight on the phon to the neurologist who arranged for me to have a lumbar puncture done.  My opening pressure was 37.5.  

    My neurologist has told me that unfortunately GPs very rarely diagnose IIH and if I feel my pressure is up but can't get an appointment with the neurologist to go to the optician to be checked.  Hope his helps

    • russ151
      russ151 tanya19088

      Posted

      Hi Tanya yes I have had my eyes tested they was fine does that mean I dont have it then ?thanks for your info 

      Russ

  • tanya19088
    tanya19088 russ151

    Posted

    Hi Russ.

    you can have IIH without selling of the optic discs but the only way to find out would be to have a lumbar puncture.

    hope you get to the bottom of it soon

    tanya

    • russ151
      russ151 tanya19088

      Posted

      Hi Tanya 

      Just wondered if you could explain your headaches are they one sided mine are on the left hand side like I say when it first started happening it would always start when I would lie down or mainly when I was trying to sleep it would violently awake me I also had seizures twitches in my head joint pains but these have calmed down now It's just puzzling me all I also sleep very little still it have been to so many doctors I had to pay in the end for the neurologist and if you have migraines they should go away surely the thing is I had suffered with a migraine type feeling for over a year and a half but put it down to a nasal problem I was having I really don't know I also have ibs and irratable bladder so the only way I will really know is if I have a lumbar puncture I am really confused with if all thanks for the suggestion for lumbar puncture I hate needles tho but maybe I should get it done 

  • tanya19088
    tanya19088 russ151

    Posted

    Hi Russ

    i have suffered from migraines for years, since the age of about 11 (I'm now 46).  My migraine headaches have always been very severe, over one eye, flashing lights etc.

    Before I was diagnosed with IIH I became conscious of a heavy feeling in the back of my head, I could only describe it to the GP that it felt like I had a bowling ball in my head.  I was told it was migraine.  I then went back a week or so later advising her that not only was my head heavy, but my vision was not normal, it was as if I was looking though a camera with some sort of special lense to make the edges blurry.  Again I was told it was migraine.  During this time I also noticed that not only was my head heavy, but that I was constantly in pain, but it seemed to be the whole of my head that hurt.  I also got extreme pain in my neck and shoulders, but the GP put this down to stress! My blood pressure was extremely high at this stage too, and I had to go to the doctors surgery every couple of days for it to be monitored.  This went back to normal once I had a lumbar puncture.  

    I hope ops this helps, but I think different people experience things differently. 

    Tanya

     

    • russ151
      russ151 tanya19088

      Posted

      Ok thanks Tanya I am going back to docs today I really don't think I am getting anywhere I have had a intolerance to alcohol since all this started aswell I feel I need to go back to my neurologist but with all these other symptoms I don't know which to sort out first 
    • russ151
      russ151

      Posted

      Waste of time doctor really fed up he said if I was waking up with a bad head vomiting that he would be concerned but as I have had MRI that's clear I am having some more blood tests vitamin d and calcium some others then going back to see him said he would prob refer me to a rheumatologist because of the pains in my neck and shoulder at a loss really 
  • tanya19088
    tanya19088 russ151

    Posted

    Hi, sorry to hear you didn't get any joy, it gets you down when you are not taken seriously doesn't it?

    one other thing, have you had your B12 checked? I have a B12 deficiency and I know that I definity feel worse before I have my injection.  It's worth a try if you're having other blood tests done too

    • russ151
      russ151 tanya19088

      Posted

      Hi I am in tomoz for them bit late now I do I have had all auto immune tests when all this had started came back ok all the standard ones they do had them before all this happened they was ok docs don't think I need to have them again not sure if it would make a difference tbh I don't know if I can be bothered with chasing this all the time anymore no one takes me seriously even when I went to a and e turned away friends and family don't believe me think it's anxiety lost my job to this as well i am just glad it's calmed down it's strange it allways would happen before I was going to sleep or if I would lie down on the left side it would just build up then it would violently awake me tbh I don't know what it all is this if it's chronic fatigue chronic migraines iih it started with pressure in my head that would awake me from sleep thanks for your advice I ain't sure what to do anymore I mentally exhausted with trying to help myself  as well as physically I give up with docs now
  • paul1524
    paul1524 russ151

    Posted

    Hi,

    First time posting. I'm looking for some advice really. I have had a headache for nearly 3 weeks now. I went to A&E, I was then admitted the following day following a CT scan. The scan showed what they thought could be pressure. So, I then had an MRI which was totally clear, Lumbar Puncture also showing no high pressure.

    I stayed in hospital for 5 days taking co-codamol and oramorph. The headache was gone but now it has returned today, in the back of the head and it feels like I can't even nod my head back and forth.

    They thought it was IIH but this was ruled out after the LP. So, the diagnosis is severe migraine. I did already suffer migraine but always with visual aura. This headache as the one I was admitted to hospital with, has no aura and no pain killers will take it away. I have no sensitivity to light or noise but feel like it could be muscular related.

    I don't feel tense but have had a frozen shoulder and scapula issue for 9 months now. Does anyone think this could be the cause?

    Thanks.

    P.

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