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New to this - post lumbar killer headache and diamox

Posted , 6 users are following.

Lj95
Lj95

Hi guys,

As the title says I am new to this. Was diagnosed last week after having all the usual tests. My lumbar puncture was exactly a week ago with a reading of 27. I was told this was high but not as drastic as some people with this condition. Before diagnosis I suffered extreme headaches and sight problems (I have bad swelling of optic nerve and discs). I have had 2 clear ct and mri. I am 20 years old, a good eater (I am vegetarian and eat loads of fruit and veg!) and my bmi is in the healthy range, if anything slightly towards the underweight side. I should also note last year I changed a lot of medication and I'm worrying this could have triggered this. I changed my contraception, my anti depressants (on lowest dose) and I am also on thyroxine and have been for four years.

Since having my lumbar puncture a week ago I am now in SEVERE HEAD PAIN. my back is also killing me too but feels better. I stayed in bed lying down for first four days after and have drank a tonne of water. However in the last couple of days (day 6+7) and since starting diamox my headache has got severe like really really bad. I am worried that the combination of LP and starting new tablets is doing this? Has anyone else had this? Sorry for the long post just thought I'd give some background would appreciate any advice and if it will go away on its own. I am a massive needle phobe and don't want this blood patch everyone has discussed (my neurologist didn't even bring it up as an option)

Thank you fellow iih sufferers!

Laura

0 likes, 11 replies

11 Replies

  • hollygb66
    hollygb66 Lj95

    Posted

    I hate to say it, but if diamox is making your head worse, you might have a leak, which is the opposite of the high pressure. Have you tried lying flat, without a pillow and see if it helps? If it does help you to feel better, you can try self-healing. You would need to stay flat as much as possible. Drink lots of caffeine and eat salt. I'm not sure why this helps, but it does. I understand why to stay flat (keep the pressure at a normal reading), but the salt and caffeine have some affect which I don't know the reasoning. Good luck.  Also, which contraception did you switch to? I've heard of certain ones being a cause of IIH. 
    • Lj95
      Lj95 hollygb66

      Posted

      Hi holly, thank you for your quick reply. I am back to lying down again and feel so much better when I am! Unfortunately if it is the diamox making it worse I guess there's not much that can be done as I have to be on it! I've only been on it three days and the pins and needles in my hands feet and face are awful! I'm reassured this is normal, but is there anything that can be done to help? Thank you I will step up my caffiene in take. I don't normally drink it so maybe it'll work!

      I went from being on the combined pill for three years to a progesterone only one for a few months and then now onto the implant!

    • hollygb66
      hollygb66 Lj95

      Posted

      I have been on diamox after blood patching. I know those feelings you're having.  I hear they go away after a week or so. I never could get that far on it. I think my low pressure was always there and taking Diamox lowers it more!  I was only on 250 mg.  

      Did they take any fluid off to lower your pressure when they did the LP?  Lying down helps, that's usually LOW pressure. High pressure feels worse lying down. There is usually a fine line. 

      Having a blood patch is nothing if you've had a lumbar puncture already. It's basically the same thing, except they take blood from your arm to put in the epidural space.  If the doctor suggests it, I'd do it in a heartbeat. Of course, this is coming from someone who has had 7 of them!!! 

      Unfortunately, no one knows why I have the low pressure symptoms, to tougher to treat.

    • Lj95
      Lj95 hollygb66

      Posted

      Hi holly, yes they took it down until it was 18 so this is probably a low pressure headache however with iih I am being treated for high pressure so it's very confusing. Right now I am confined to bed with excruciating pins and needles everywhere and the headache when I sit up! Here's hoping it gets better soon. Thanks for your advice
    • Ginny_Weasley
      Ginny_Weasley Lj95

      Posted

      The pins and needles are certainly from the Diamox. If you were having vision issues it would seem that you had enough pressure to cause some swelling and possible damage. If you have a CSF leak your pressure will continue to stay lower than intended. You could speak to your doctor about the Low Pressure Headache symptoms caused by a CSF leak from the LP and also about the possibility of switching to
  • Ginny_Weasley
    Ginny_Weasley Lj95

    Posted

    Laura,

    I did experience almost the exact same situation as you. My pressure reading was 28, I was told the took out 14cc of spinal fluid and I started 500 mg diamox. My LP was on a Thursday morning, I felt great on Friday morning, and then as the day went on I started feeling very nauseous, and like the room was moving while I was laying flat in bed. My head was in extreme pain, but very different than the headache I had experienced prior to the LP. I missed a week of work and on the following Friday had a blood path done.

    I too don't like needles. My neurologist had prescribed Ativan for me to take prior to the procedure, and I recommend you ask for it. It is for anxiety and is pretty sedating, so you barely care what they are doing.

    My neuro referred me to a pain clinic for the blood patch, that doctor told me that Low Pressure Headaches due to CSF leaks caused by LP's typically resolve on their own after 2 weeks. I just couldn't stand to feel that way any longer and to continue to miss work when they could attempt to fix it. The procedure worked, my back hurt like BAD, I used ice packs and it helped ease pain. Best of luck to you.

    • Lj95
      Lj95 Ginny_Weasley

      Posted

      Hi! Thanks for your reply, it's nice to see people in the same situ.

      I live in the UK (don't know if that makes a difference) but doctors over here don't like giving out anti anxiety meds as easily as the US and I was told for my lumbar puncture I needed to be fully alert sad I really didnt want to be! Haha

      Have you got any tips for the pins and needles with diamox?

      Thanks for sharing your story

      Laura

    • Ginny_Weasley
      Ginny_Weasley Lj95

      Posted

      I posted and hit reply too quickly sorry! Are you on an extended release of Diamox or a tablet? I had to insist on the Extended release because I was doing things like driving work and then would not remember any of the drive just being almost a zombie. There are other carbonic anhydrase inhibitors that they could try, Topamax for example can have some of the same qualities. I personally don't tolerate Topamax well but other people do. I have been on the Diamox more than a year and currently am taking 1000mg or I see stars all the time and have extreme headaches. The main thing is to ask your doctor how log to give it to know if it is going to work, and if you feel wrong about something speak up. I personally went from 500mg to 1000mg in November and it took me about 3-4 weeks to adjust, my taste was off, the tingling came back etc.
    • laurajane2508
      laurajane2508 Lj95

      Posted

      Hiya Laura,

      I know you posted a while back but out of curiosity I was wondering how you was doing now and how you was getting on? I'm also from the UK and I'm 21 smile

      I was diagnosed with IIH in June 2015 by a LP with a reading of 37. I was first put on Acetazolamide (1500mg a day) but couldn't tolerate it and have been on topirimate for a while now gradually upping my dose to 200mg daily. I'm now on Amitriptyline, Citalopram, Neproxin, Propanolol and Topirimate.

      Have you had anymore LP's or been put on any other medication? Im sorry for all the questions, just interested in your story because I haven't spoken to anyone with IIH yet! smile

  • lindsay00486
    lindsay00486 Lj95

    Posted

    I have just been diagnosed also, two days ago, I had a lumbar puncture and was sitting at 28 I am a healthy 28 year old not over weight or on any medication other than coming off mini pill, I have been taking 500g of Diamox for two days and the headache has not eased at all
  • kenya76
    kenya76 Lj95

    Posted

    Hi my name is Kenya I'm a 41 year old woman who was diagnosed with iih about 10 months ago. I was originally diagnosed with high blood pressure but the headaches never went away even after taking meds. I finally got diagnosed with iih and was put on acetazolamide 500mg which did not work. I have had 2 lumbar procedures inwhich my levels were over 31 both times. My neurologist finally advised me to work out and started increasing my meds. Im now on 2000 mg daily which has truly helped. I also lost 19 pounds which has helped alot as well. I was on 5 of different pills to get me to this point but my neurologist is truly the greatest he pushed and encouraged me to help myself so that a shunt would be my next step. He has also advise me to make caffeine my friend not sweet but just enough so I would drink it. I do still get headaches but they are not everyday anymore. Im completely new to this disorder but i have done soo much research to see what i can do to help myself from going blind, having a stroke, or even having to get a shunt. Speak to your doctor about changing the dose of your meds to morning and nite to see what helps you. Our bodies are all different and we have to play with the meds to see what works.

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