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UK iih sufferers

Posted , 9 users are following.

kerinoo
kerinoo

Hi is there anyone on here who is from the U.K. and been diagnosed with IIH? I have recently been diagnosed and it seems a very lonely illness. Although I have a great family network all I feel like I do is moan or groan.  My vision is blurry my head always fuzZy constant confusion etc etc

And don't get me started on tiredness. I'm trying to keep in work but being a primary teacher this is proving quite difficult.  

I have just had more opthamology tests done and now await more results but in the mean time just have to get on with it.  I am suffering terribly with water retention in my feet and hands. Does anyone else have problems with their pituitary gland as apparently mine is empty so therefore trying to lose weight is pretty much a no go at the min as if controls your thyroid. 

Thank you for reading this and thanks for your support.

Keri x

0 likes, 23 replies

23 Replies

  • rubeena26947
    rubeena26947 kerinoo

    Posted

    Hi they are lots of us suffering from iih and getting on with lives no one knows what we go through until we find another family friends are there but its still a struggle fighting ourselves everyday finding out observing nit knowing and not sure about what this is and most of why.why us .
    • kerinoo
      kerinoo rubeena26947

      Posted

      I know it really is a struggle and sometimes I do question if it is all in my head but I really know it's not. It just makes me feel like I'm going nuts x

  • kerinoo
    kerinoo

    Posted

    I know it really is a struggle and sometimes I do question if it is all in my head but I really know it's not. It just makes me feel like I'm going nuts x

  • melanie69064
    melanie69064 kerinoo

    Posted

    Hi, just wanted to reply and let you know it does feel lonely this illness, I understand.I was diagnosed about 2 years ago and I don't know what is part of the illness or isn't! I only got diagnosed when I went to get a pair of glasses and ended up being told I had optic nerve swelling behind both eyes.I have only had a few bad headaches that have ended up with me in Aand E so I don't count myself to bad.Its all the other things, pounding I the ears, blurred vision, pains in arms and legs, I don't know if anyone gets that as part of their condition as I don't know who to ask as my GP doesn't really understand the condition.I did take azcetazolimide for 18 months and really tried to persevere with it , ended up being deficient in folate, B12 and iron so that didn't help.I now take Toprimate and seem ok at the moment.I want you to know you are not alone their are more of us out there even though the condition is rare.

    Take care

    Mel

    • kerinoo
      kerinoo melanie69064

      Posted

      Thank you for that. I often have numbing/tingling in my hands and feet and sometimes no feeling from my knees down just pins and needles. It is great to know we are not alone though as it does feel like that sometimes . x
  • kerinoo
    kerinoo

    Posted

    Thank you for that. I often have numbing/tingling in my hands and feet and sometimes no feeling from my knees down just pins and needles. It is great to know we are not alone though as it does feel like that sometimes . x
    • kerinoo
      kerinoo

      Posted

      Has weight been mentioned to any of you ? It hasn't to me yet but I know that it will come to that soon. I have put on a bit of weight over the last couple of years but I have been much heavier than this before and never suffered so don't really understand it?  

    • sarahcass40
      sarahcass40 kerinoo

      Posted

      I was diagnosed 2 yrs ago. Had a VP shunt fitted 2 months after being diagnosed. Was 22stone at start of this year. Had gastric bypass end of January. Now 12st3lbs. Pressure is good (21 at last lumber puncture). Still have daily head pain, blurry vision on and off, balance still  off, ST memory poor and concentration still diabolical. Hoping it all improves over the next 6 months. There’s no guarantees with weight loss but it’s gotta be beneficial in the scheme of things. Don’t ever think you’re alone, we hear you and understand👍

    • kerinoo
      kerinoo sarahcass40

      Posted

      Thank you Sarah that's really interesting reading. Well done for your weight loss like you say it must be beneficial. I am eating healthier but due to me empty pituitary gland my hormones and thyroid are all over the place. For me it is the water retention I'm finding really difficult to cope with. Were or are you on any meds? X

  • windy52035
    windy52035 kerinoo

    Posted

    Hello Keri, 

    It is a lonely illness, but you are not alone! There are far too many of us with iih. It’s good to have a strong support system, but most of us have found it hard to relate to our family & friends. It’s one of those things that unless you have personal experienced you can not understand it. It’s more than just a headache...aches, pains, fatigue, confusion...you name it someone is bound to be experiencing it too. I’m not sure what kind of support is available in the uk, but I’ve found a support group on Facebook...so check it out! There are lots of people you can learn from, however, be careful with that too! Best wishes to you! 

    Windy 

  • kerinoo
    kerinoo

    Posted

    Thank you Windy for your reply. It is good to know that there are people out there who understand x
  • Flamingo21
    Flamingo21 kerinoo

    Posted

    Hi I’m 21 years of age and the past year I had been experiencing very intense head pain which felt like my actually brain and when I bend over it feels as if my brain is bruised and it led me to hardly washing my hair because it was very painful and uncomfortable to tilt my head back or forward , I have been prescribed 13 medications in the past year and only this year in past 3 months I was referred to neurologist who told me she suspects that I have iih , I had a mri scan and eyes checked by specialist and the hospital . My MRI showed up a prominence if subarachnoid  space which could be due to csf or my weight and was told to loose weight  , I am finding it so hard to loose the weight . Last year I lost 4 stone went from 16 to 12 stone now I’m back around 15 stone . I am always feeling like my eyes are hurting an constantly checking then due to the pain and all over my scalp , tinnitus in my ears and neck pain it’s so horrible I don’t know what to do anymore I am on acetolamzide but i don’t feel no relief to be honest , I have been reading about procedures alongside medication and I’m so scared , the eye specialist I saw said there is no evidence of disc swelling and no papillioedema was noted . But I’m so scared as neurologist told me I may ah w to have a spinal tap or a tube and told me it’s not very nice and if I wasn’t to loose weight that’s what would happen , the pain has crippled me and I feel as if I’m elderly not 21 . Constantly feeling dreaded and so

    I’ll , I don’t really have any friends or much family and no one is comforting me or reassuring me apart from the eye specialist , I’m so scared x

    • kerinoo
      kerinoo Flamingo21

      Posted

      Don't be scared just go with it as that's all you can do. Have you not got anyone you can chat too? Remember that everyone is always here for you in on this site x

    • janine86
      janine86 Flamingo21

      Posted

      Spinal taps are not that bad at all. i had one and felt so much better. Your doctor was wrong to scare you like that into losing weight. Tube is much more invasive but can be avoided. I would get a second opinion. Hope your feeling better.

  • haydangate
    haydangate kerinoo

    Posted

    Hi Kerinoo, sorry to hear you have IIH, I just wondered which hospital your under as I'm addenbrookes in Cambridge. They have specialised stent therapy to help relieve the pressure. Have you been advised to have surgery? I get very red feet but no fluid retension Xx

    • kerinoo
      kerinoo haydangate

      Posted

      Hi that's where I am too, addenbrookes Cambridge. The only thing for me is that luckily I do not have papillidema but I have all other symptoms. How long have you been diagnosed with iih and whose your doctor? Also what medication are you on? X

    • haydangate
      haydangate kerinoo

      Posted

      Hiya Kerinoo, I don't have papillidema either and never had luckily. I have Dr Axon and Dr Higgins and have been pleased with them, mainly because of their understanding of the condition. I have had iih 14 years, have 7 stents and 2 skull base surgeries too. Have they suggested treatments for you? X

    • kerinoo
      kerinoo haydangate

      Posted

      No I've not had any treatment as of yet as I've only just been diagnosed. What medication are you on or have you been on? X

    • haydangate
      haydangate kerinoo

      Posted

      Luckily I don't have any medication only aspirin because I have narrowing of the veins causing my iih. I've tried topamax, indomethacine and amitriptyline. None helped though! I just stick to paracetamol. Best to avoid codeine cause it raises pressure! Have you found the Addenbrookes Facebook forum it's really good. (I came off fb though and it's the only thing I miss) I only joined this yesterday but it looks like hardly anyone uses it cause most of the posts are really old. You welcome to ask me anything you like as I know how daunting it is at first xx

    • kerinoo
      kerinoo haydangate

      Posted

      No I'm not on Facebook as I'm a teacher. Do you work? I am really struggling though I don't ever feel like my normal self anymore x

    • haydangate
      haydangate kerinoo

      Posted

      Yeah I'm a beauty therapist, I work a lot of hours and really struggle most days. I know what you mean about not feeling yourself, this condition takes your identity and is really quite consuming. It's a shame you can't do facebook, maybe a family member would let you look through theirs. It's really quite a rare condition and it can make you feel quite alone because people just don't understand, (including doctors! )Xx

    • kerinoo
      kerinoo haydangate

      Posted

      I know it is quite a lonely illness but it has given me hope on here seeing that everyone feels similar. I thought at first I had the start of early dementia. It's quite scary. Whereabouts in the uk are you? X

    • haydangate
      haydangate kerinoo

      Posted

      I'm Lincolnshire, how about you? What's next for you at addenbrookes? Your always welcome to send a private message if you prefer! X

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