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possibe IIH, starting diamox

Posted , 8 users are following.

anna91141
anna91141

Hi all! I'm new to these forums. I was recently put on diamox by neurologist. She is considering IIH as a diagnosis. Here's some background: I've had horrible headaches the last four years, in the last 6 months they have gotten horrific. I have tried amitriptyline, topamax, propanolol, nortiptyline, naproxen, and a few others... nothing has worked. I also started losing a lot of weight in the last year, about 65 pounds. That happened without trying. I'm not overweight either (which I've read is usually a marker for IIH). I have severe fatigue and nausea as well. Both of my optic nerves are very swollen. I do get weird whoosing sounds in my ear, usually upon changing position. I had a negative brain and spinal MRI. My dr ordered a lumbar puncture about a month ago now and my pressure was 19 (so just below what is considered abnormally high). My neurologist thinks it is high enough to give the diamox a try. I'm a little nervous. I'm also being tested for blood cancer and autoimmune diseases. I'm hoping that someone on here has a similar story to mine?

2 likes, 7 replies

7 Replies

  • Magicsparks
    Magicsparks anna91141

    Posted

    When they did your LP was it laying down or sitting up? Sitting up can give abnormally high or low readings. That happened with me on two occasions when they could not get the needle in and did it sitting up then lay me back down, it messes with the reading, low in my case.

    If the medicaions are not working concider a shunt, if you are worried about the expertese at your current hospital the National hospital in London is excellent and can arrange patient transport for long distance if needed.

    You can ask your GP for a referral and you can do that while still at your current hospital. You are entitled to as many opinions as you need.

    Hope you are getting somewhere with it xxx

  • janeb73
    janeb73 anna91141

    Posted

    Hi Anna,

    I've been suffering with the same symptoms as you've described severe headaches and whooshing sounds in my ears,I was prescribed Diamox after having a Lumbar puncture which my fluid measured 27 and was told that the pressure should be 15,I was fine for the next 2 weeks after my LP but then my symptoms came back,I have been taking Diamox now for 1 week and haven't felt no better maybe have to wait a little more for drugs to get into my system,I have been booked in for a full visual eye test which am awaiting my appointment,I'm really pleased to have found this site and read other patients stories,I hope my email puts you at rest a little feel free to reply Jane.😊

  • wendyc3552
    wendyc3552 anna91141

    Posted

    Hi Anna, I'm sorry to hear that you're feeling so poorly. Your story sounds a lot like mine. As far as your pressure readings go - the normal for one person is not the same as the normal for another. (per my doctor - and she is one of the top docs in this feild in the US) A reading of 19 could be quite high for you. The diamox works differently that all of those others - it actually lower the pressure so I hope it is providing you with some relief. Good luck. 
    • devin42
      devin42 wendyc3552

      Posted

      Wendy I have bad pressure and had to LPs the last two days and put on diamox..terrible side effects. I dont like it at all. Made me feel worse. I took medicine 4 times first day as prescribed then 3 times the following day. Nauseated, head felt weird, using the bathroom constantly, dry mouth and sores in mputh. Ugghh
  • janeb73
    janeb73 anna91141

    Posted

    Hi Anna,my symptoms started about two years ago terrible headaches,whooshing sounds in my ears,fatigue and nausea.I've been seeing my neurologist for about 14 months now I had a ct scan loads of blood tests and they both came back normal it wasn't until I had my LP and my readings came back at 28 and was diagnosed with IIH,I've been given Diamox but on first start taking this pill I was I'll the first 3 days of it getting into my system fatigue,terrible nausea and still get my headaches and whooshing in my ears,I'm gonna stick with it for a while to see if it settles,I've also been booked in for a full visual eye test which I'm still waiting for an appointment,I hope you get sorted as just give the message time to settle,if you reply to this letter and let me know how you feeling now since its been a while.Good luck...xx
  • Ginny_Weasley
    Ginny_Weasley anna91141

    Posted

    Hi, I am new to the group but have been on diamox for a year now. I began on similar 250 mg tablets 4 times daily and had horrible side effects. Extreme fatigue, barely able to function, pins/needles, metallic taste to name a few. I did a lot of readingand realized that my doctor had prescribed the normal tablets, but that a time release is available in certain doses. My dose was lowered but when I began taking the time release capsule it made the side effects more tolerable. Believe it or not your body will adjust to the dose eventually and you may be able to manage the medication, it will take some time, give it about a month or two, and you may feel slightly more normal, or as normal as can be for an IIH patient. Best of luck to you.

    Jennifer

    • lorraine80169
      lorraine80169 Ginny_Weasley

      Posted

      Hi I have suffered with IIH for roughly 2 years and I am taking diamox 250mg two twice aday...and topiramate 25mg five twice aday...naproxen 500mg when needed and sertraline 50 mg once a day! When I first started my meds I hated ,the side affects where horrible, but I kept with them and they do take the edge off. But now am finding that am getting alot of facial numbness on left side of face,so last wedensday I was on the jefferson ward in walton having my first lot of nerve blocks done!! Not as bad as I thought, id say the LPs are worse, id try anything if it helps, so I will keep you up to date if it works wink stay possitive and be strong xx
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