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Could i have INTERCRANIAL Hypertension

Posted , 4 users are following.

malcy555
malcy555

I seen this discussion and thought i would seek some advice as i am at a lost cause also.

About 6 weeks ago i was walking and had a dizzy spell with headache and went to the gp the next day in which see sent me to accident and emergency.

I had bloods and CT done and all came back normal. They wanted to do a LP but i stupidly refused as was terrified of it being honest.

Went home and spent the next few weeks suffering constant headaches and dizziness

Went back to accident and emergency but they said there was nothing they can do now and think i am fine, So they said i should see a neuro doctor for migraines.

I was told i will have to wait 16 weeks on the nhs.

I decided to go private and paid for a mri of the brain and that was clear. The doctor seemed to think i was suffering from chronic migraines and put me on a medicine called PROPRANOLOL at 40mg twice a day.

I have got a little better but i am no where near 100% like i was before i got this condition. I have done weights for like 20 years but now i cant even dream of any exercise otherwise i feel more dizzy and headaches are worse.

I also have glaucoma that i got about 7 years ago but no idea is this has something to do with all this But that is being treated with eye drops to keep pressure under control.

I read your post and wonder if i am suffering from this condition call INTERCRANIAL HYPERTENSION.

Mind you the neuro doctor would have thought of this i am sure but they never mentioned this to me.

My symptoms are constant light headed and headaches at my temples like a crushing feeling and around my eyes.

I feel like a lost cause now and every day is a nightmare living with headaches and dizziness and cant even exercise at all.

Would appreciate any advice on this subject if you think my condition is the same.

Thanks

Malcolm

0 likes, 11 replies

11 Replies

  • jessdall
    jessdall

    Posted

    I was diagnosed with IIH when I was 14, having many lumbar punctures and then treated with beta blockers, it eventually went away, now 23 I've been experiencing exactly what you have and they have now decided to try treating me with propanol again.

    So similarly I am in the same position, if they don't work I will be going for a lumbar puncture to test the pressure.

    Your symptoms seem exactly like what I have and I've been told you have IIH for life. I would definately advise asking for a lumbar puncture if you do not feel any better!

    You have to keep pushing I'm afraid and I know how life changing it can be so don't wait around for things to change. It's not a quick fix but at least you'll know where you stand.

    Biggest way to tell is whether you get worse laying down or standing.

    Hope this helps!

    Jess

  • malcy555
    malcy555

    Posted

    Hi Jess,

    When i first went to the hospital at the start of all this they wanted to do a LP on me and i refused because i had heard awfull things about them. Are they as bad as people say or not that bad?.

    So you think i maybe have IIH then with my symptoms i have having at present.

    When i am laying down i am ok ish but walking around i tend to get dizziness and a weird thick feeling in my head.

    Mal

  • jessdall
    jessdall

    Posted

    I have to be honest, they're not nice .... I had a pretty bad experience, but I've been told it's rare. I have asked to have mine under X-ray next time which is what they had to resort to the previous- that's really not so bad.

    Unfortunately it is the only way to test.

    From all my experience I would say you do have it. It's exactly the same as what I get. But my vision is affected, is yours?

    J

  • malcy555
    malcy555

    Posted

    Well what symptoms to you get with vision?. I am a little sensitive to light and eyes feel tired.

    I have no double vision or anything like that.

    Mal

  • jessdall
    jessdall

    Posted

    If it's really bad I get blurry vision, very sensitive to light! Eyes feel heavy as well.

    Yep, you do need to check it out with a lumbar puncture I'm afraid! I do hope you can get some relief, it's horrible!

    J

  • malcy555
    malcy555

    Posted

    I will go back and see the neuro doctor this week and mention all this to him about IIH.

    All this has really put my life on hold at the moment as i was a very active person before all this

    happened.

    I will let you know how i can on this week and really do appreciate your help and advice. Just so nice to talk to someone with the same sort of problem.

    Mal

  • jessdall
    jessdall

    Posted

    Yes do let me know how you get on! I would push for a lumbar puncture.

    Unfortunately it's one of those illnesses that can be quite lonely as people can't see how much pain you are in or even understand. And it completely drains your energy, so I completely understand.

    Take care and hope you find some answers

    Jess

  • chatty123
    chatty123

    Posted

    Hi Mal,

    My 13 year old was diagnosed last year after suffering from bad headaches that we thought were migranines. She described it as a crushing type feeling in her head. The first thing we had was a full eye test at the hospital as if youhave a high pressure level it presses on your optic nerve which causes the pain. The eye test shows this up and then they are keen to do the Lumber punture to drain the fluid as leaving the pressure can send you blind.We also had CT nad MRI scans to rule out anything else. It did so my daughter went onto have several Lumber punctures, not nice at all but she had gas and air when she was having hers. The first one was a complete waste of time as she was sitting up which apparently gives a false reading, you need to lay on your side and curl like a cat. This opens the spine and as you are level the reading is more accurate.

    My suggestion if you have this is not just lay down for 4 hours after but go home and lay down for 4 days as we dindn't know this and after 24hours she was screaming saying her head was going to explode. You really need to take it easy and lay down till you adjust. She has been on medication ever since and regular eye tests and all seems ok. I thought it was with you for life but a recent follow up appointment our nurologist said if another eye test in six months is ok then she can come off the medication. She said being a girl she should avoid the contraceptive pill in the future (hormones) and could have problems when pregnant. They don't know a lot about it but it seems to be linked both to weight and hormones so to be a man with this condition is quite unlucky, or maybe its something else. I smypathise with your delay as we have no childrens nurology in our area and had to wait for a referal, it was a nightmare to get a nurology appointment but the eye tests and scans and lumber puncture were all done locally by paeditricians.

    Hope you go on ok,

    cathy

  • malcy555
    malcy555

    Posted

    Hi Cathy,

    Thanks for the reply.

    Well i was first diagnosed with high eye pressure about 7 years ago due to the fact i used to compete in bodybuilding and was using steroids at the point in my life. I was told i had high inocular pressure and was put on medicine eye drops called xalacom and have been on them ever since to control my eye pressure.

    At that point in my life i had headaches but no doctors ever said anything about IIH.

    But this has happened to me in the last 6 weeks but to be honest the headaches are not as bad as they first was since starting propranolol so maybe it is not IIH then.

    I know you said it is rare for a man to get this awfull condition and i have looked this up are you are 100% correct on that.

    I did mention to my GP today and he said that the MRI would have showed pressure on some parts of the brain and it never. He did not think i had this condition but to be honest i dont think anyone knows what is going wrong with me at the moment.

    I priced a lumber puncture today at the private hospital and it came out at around 1500 pounds but i know i would be well looked after instead of laying in a@e for 8 hours waiting and waiting.

    Or maybe i should just carry on with the propranolol and see how i am in a week or two before i decide.

    Mal

  • chatty123
    chatty123

    Posted

    My daughter didn't particulary show anything in her eyes but they said the only way to rule the condition in or out was to have an LP. I thinl i would wait and let things take their course and when you finally get to a nurologist see what they say. I know you get desperate when your in pain and struggling. A headache diary is something they are always very keen on so may be worth keeing one ready to give the nurologist. It may be you find a trigger with food or an activity but if not you've already done the work to rule everything out.

    Do hope you go on ok.

    cathy

  • russ151
    russ151 malcy555

    Posted

    Hi Malcom just wondered how you got on I am in a very similar position to you all your symptoms are very similar to mine I was told I had servere migraines but the thing is they never leave me kind of go to a base line same thing pulsating still on 1 side no energy I use to do weights for years now I can mAnage a bit of swimming just wondered if you had any advise

    Thanks

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