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Newly diagnosed

Posted , 5 users are following.

sparkleyeyes06
sparkleyeyes06

Hi,

I am a 28 year old Female recently diagnosed with IIH and I feel lost! I am taking acetazolamide 250mg daily and the side effects are brutal to say the least, dizziness/confusion/nausea and pure exhaustion, plus terrible cramping and tingling in my hands and feet! I have been taking it for a couple of weeks now, does this subside?? Also how do similar people go on with their day? I'm currently off work and the thought of attempting to go back is making me so anxious! Any tips or advise would be really appreciated as my doctors aren't communicating very well ,

Thank you

1 like, 11 replies

11 Replies

  • shaunni08755
    shaunni08755 sparkleyeyes06

    Posted

    Hello smile I feel your pain.. I'm 25 and Beeb suffering with headaches for 3 years before one doctors finally listened and was diagnosed with IIH in October last year and was also put on acetazolomide, I'm sorry to say they had the same affect on me but I was on 500mg daily. They didn't work great though as a repeat lumbar puncture in Feb showed that the pressure was still too high and they doubled the acetazolomide the pins and needles became unbearable and I have 2 children I had to have my family help look after them it was awful. So they have taken me off them and have put me on topiramate and although the pins and needles have gone the headaches are back so I don't think they are working unfortunately! I hope you have better luck than I have! X

  • katiec44
    katiec44 sparkleyeyes06

    Posted

    Hi,

    I'm an 18 year old female who was diagnosed with IIH in early May. I've been put on Acetazolamide - 1000mg per day. The only side effects that I've experienced are occasional nausea from certain odors and extreme exhaustion. I swear I could sleep for 14 hours straight and have no problem. I feel constantly exhausted. My doctors all warned that I would probably feel tingling in my hands and fingers along with a metallic taste in my mouth, but fortunately, I have yet to experience it.

    I hope you find a happy medium for everything. Good luck!

  • sarahcass40
    sarahcass40 sparkleyeyes06

    Edited

    Hi,

    Keep going with the acetazolamide. I hear you, the pins and needles in toes and finger tips are horrible. I was on 500mgs morning and night, to start off with I had the "tingling" but after a while it got better. The neurologist took me off them completely for 6wks because of my complaints of confusion and fuzziness, but then put me back on them 6 weeks later and I had to go through the tingling again. My current dose is 250mgs morning and night, sometimes I'll get pins and needles in my toes, but not very often now. I can go to work without it being a hindrance. Was diagnosed 24th March last year, went off work sick there and then as I was admitted to hospital until 9th May. I had a VP shunt fitted end of April last year and went back to work Just over 2 months later on 19th July. It's hard work having IIH, living with it is so hard. Being anxious about work won't help. I had to get some stress management help from GP because it was adding to my IIH symptoms. It IS possible to work and have IIH, it's just a struggle. It's weird because just when I think my IIH is being managed and I'm having a good period, right out of nowhere I'll have a bad day where I can't lift my head because of the pain. I hope you persevere with the acetazolamide, the tingling should get better. Good luck

    • sparkleyeyes06
      sparkleyeyes06 sarahcass40

      Posted

      Hi 😊

      Thankyou so much for your reply! You have given me hope! It turns out the acetazolamide isn't doing a very good job as my pressure keeps rising back up and I'm needing LPs to drain the fluid 😐 I think I'm being put on another tablet to boost its effects or something? Tbh I'm just doing as I'm told 😊 I'm also losing weight which I'm hoping will help with symptoms! I hope life is treating you well and your having a good period! Thanks gain for the pro talk 😊

    • sarahcass40
      sarahcass40 sparkleyeyes06

      Edited

      Hi,

      It's a nasty thing this IIH isn't it. I'm overweight (19stone 11lbs). I was 24stone at my heaviest, I tried slimming clubs and could always manage to get 2-3 stone off but then sort of plateaued. Long story short, the neurosurgeon I'm under says weight is key to relieving symptoms. I've looked at studies online and that seems to be the case with most but not all. So he referred me to bariatric specialist who took me on at the end of last May. I had a choice of different gastric operations, I chose the bypass which is permanent. I chose it because I want a permanent affect on my IIH and both bariatric and neuro agreed with me. So after over a year of seeing nutritionists, taking A-Z vitamins, going to OWLS bariatric groups I'm finally on the last leg of the waiting list. My neurosurgeon is hopeful we should see a difference after the weight comes off (fingers crossed). If it works I'll be posting what differences it makes.

    • sparkleyeyes06
      sparkleyeyes06 sarahcass40

      Posted

      Hi,

      It is a horrible thing indeed! I'm about that weight now, going to continue with the weight loss and see how I get on, as you said it seems to be the key! I am glad you are finally getting somewhere with regards to your surgery, I bet you cannot wait for the effects! I look forward to you reporting back! Take care xx

  • jennifer15759
    jennifer15759 sparkleyeyes06

    Edited

    Good Afternoon,

    My Daughter (18) was diagnosed with IIH about two months ago. We had been fighting the insurance company and primary doctor who said that's not what she had. It got so bad that she went to the eye doctor and he is the one that said that she needed to see a nuerologist. She ended up finally seeing him last 4 weeks ago last thrusday. As soon as he saw her he made my Husband rush her to the ER and they did an emergency LP. She had been suffering with this since May. She had her LP and her levels were 26. She was fine for a couple of days and then the headaches started coming back. Well we ended up going back to the ER yesterday and they found more fluid building up and they wanted to do another LP. My Daughter said NO, so now we are waiting for the Nuerologist to tell us what the next step should be. She is on acetazolamide 250mg twice a day and the tingling and numbness is horrible. There are days that she's in so much pain and can't even move around.Thank you for telling your story.

    • sparkleyeyes06
      sparkleyeyes06 jennifer15759

      Posted

      Hi!

      I'm sorry to hear the trouble you guys have been experiencing! It's the last thing you need whilst struggling with IIH! LPs are horrible but very necessary to try and relieve symptoms, I had my 3rd last week under x-ray guidance as I refuse to let them do it otherwise, I find usually it is a lot less stressful and painful and they can see where they are going! Unfortunately my pressure was back up to 31 , the tablets aren't working! My neuro can't increase them due to me not tolerating them, the pins and needles are just too painful! So hopefully they have more options 😊 I was advised there are different tablets to try although acetazolamide is the best! Worst case scenario would be a shunt, but hopefully that won't become an option for either of us! Can I ask is your daughter on the heavy side like me? As previously mentioned it can add to symptoms terribly! Just a thought 😊 I find ibuprofen helps when the pain is bad but that's my opinion, hopefully your daughters doctors can do more for her soon and make her more comfortable, I have been where she is and it really is debilitating! Best wishes x

    • jennifer15759
      jennifer15759 sparkleyeyes06

      Posted

      She is about 180 pounds and has been trying to lose weight and has just been in to much pain to try and go for walks or do any kindof exercise. 
    • sparkleyeyes06
      sparkleyeyes06 jennifer15759

      Posted

      Hi,

      Oh I bet she's been trying her best considering what's been going on! To be honest I'm not sure that her weight would be a big factor in her symptoms? I think when advising against weight loss the doctors are aiming towards people like myself who are actually an unhealthy weight, ypur daughter seems to have been quite unlucky in developing this! I do hope she gets some relief soon, it really is so difficult to deal with everyday xx

  • sparkleyeyes06
    sparkleyeyes06

    Posted

    Quick update, I seem to have evened out which is great! Although the cramps and tingling persist! My pressures keep rising so back and forth to the neurologist it is! Iv gone back to work and although I'm tired I am managing! I was open and honest with my employers and they have been great! Xx

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