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 Just diagnosed with IIH 2013

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automum
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PostSubject: Just diagnosed with IIH 2013   Wed Jan 23, 2013 6:41 pm

Hi, ive just been diagnosed with IIH first saw a neurologist 12 years ago for migraine had my first lumbar puncture in nov, fluid at 33, i take indometacin, topirimate and acetazolomide, still in agony 6-8 times a day, will never be given a shunt i dont think as i have a 15 year old profoundly autistic and violent son, who needs 24/7 care from me and hubby so home life very stressful and he does target my head on occasion so a shunt not really a safe option, ice works really well for me just wondered if you or your members had any other ideas, (not meds )that have worked, also im sure i have triggers and its so hard to keep a diary as i also keep a diary for the multitude of problems we have with our son, so are there any common triggers i could try and avoid for a start. I am very overweight so on a diet which honestly doesnt help (not giving in!! lost 5kg since jan) I think food/lack of both cause problems, would seriously take on board any advice for management at this stage, had 3 mri and a ct book for a further mri with dye to check for collapsed drainage vein but cant be fixed if it is so just research really, back at neurology in 4 weeks after checking my eyes thoroughly, my neurologist is very honest and says not much he can do apart from meds and try to save eyesight, pain will always be an issue :( ps Hi everyone Very Happy
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Heidi
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PostSubject: Re: Just diagnosed with IIH 2013   Wed Jan 23, 2013 7:13 pm

Hello Very Happy and welcome to the group. You must feel caught between a rock and a hard place at the moment.It's good that you are open to other ideas, and I'm sure you'll find that other members will share what has worked for them with you. I always recommend a cold cloth on forehead, eyes and neck to help soothe, but you seem to have found that ice helps you, which is a good start. Caffeine also helps to raise pressure, so if you're a coffee drinker try to have decaffeinated unless you already are. It's also worth noting coffee is good when you have a low pressure headache, ironic I know.
Have you noticed your headaches worsen during your time of the month and with the weather? We seem to be very sensitive to these kind of headaches, and the same when we are very active. Have a look at our A-Z of headaches common with IIH
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PostSubject: Re: Just diagnosed with IIH 2013   Fri Jan 25, 2013 8:31 am

hi so sorry to hear about your situation. has your son ever had an LP? the reason I ask is because my son is also autistic, he is 5 yrs old and high functioning, and his ICP was the same as mine. I've been diagnosed IIH but for some reason the peds neuros don't know what to do with an ICP in the borderline range. but my son's autistic symptoms were dramatically improved in the 24 hrs after his tap. and everything I've done to try to decrease his ICP has helped him. I've actually researched a lot and I think that autism is caused by mild IIH, present from birth. maybe if you both got shunts???

you probably do need to do something drastic to lose weight, like gastric banding or something. some people are not better when thin but for others it can be a "cure". I myself was sick as a dog when stick thin. if you got sick as you gained weight this is a clue that weight loss would help.
make sure they do an MRV of your neck, to rule out styloidogenic jugular venous compression syndrome. very newly recognized cause of IIH.
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PostSubject: Re: Just diagnosed with IIH 2013   Fri Jan 25, 2013 10:06 pm

Hi and welcome to the group! IIH varies so much I'm afraid it may be a lot of trial and error for you. As Heidi said, caffeine can increase pressure. Other members have found dairy and other food to be triggers. A symptom log that includes food, weather, weight may be a great help to you in figuring it all out..if you can find the time.

Body position can have an effect..I've found laying on my side at 45-60 degree angle helps relieve high pressure symptoms. Cold packs and heating pads also can take the edge off..that seems to vary with members too. I'm not sure of your financial or healthcare situation, but some integrative therapies like acupuncture have also been known to help. Take a look at the Alternative Therapies section for other ideas.

The most important thing is to preserve your vision. Weight loss does help some, but I gained weight after diagnosis and losing weight gave me more problems..it really all depends on your body. In saying that it is always better to be at a healthy weight. A lumbar shunt may be an alternative, if weight loss, meds, and other alternatives don't help. The shunt goes in your spine and catheter wraps around your side dumping into your abdominal cavity..head thumps shouldn't affect it. It sounds like you have an open dialog with neuro, so just make sure you're keeping him informed.

I hope you find some relief soon!
Take care,
Julie
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PostSubject: Re: Just diagnosed with IIH 2013   Sat Jan 26, 2013 12:39 pm

Thanks everyone, the weight loss is going well, ive always been big but also very healthy i walk miles and hike, i can walk 8 miles easily in a few hours and always have a healthy bp, however the walking has had to stop as the pain increased, im 20kg lighter than my heaviest a couple of years ago, the past 2 days ive not been able to get out of bed its been unbearable, the one thing thats changed is ive stopped coffee, this morning i got up to look after my 7 year old and had a coffee just to see if it was that and it was like taking magic pain killers i cannot believe it, ive only had pain around a 2 (past 24hr not lower than a 9). I honestly thought coffee was making my head worse and all i read said the same avoid coffee with a bad head, i only ever drank 2/3 cups a day so not a big drinker. Ive just done a little research and found some very interesting facts about coffee and the spinal cord and brain stem, please DO NOT think i am giving this as advice as i would never just giving you my experience today. I am not sure what is going on in my head but i am very glad im having another MRI . I was reluctant to go ahead ive had 2 and a ct , very good care from neurology but i first saw the 12 years ago and it just keeps getting worse, does anyone take pain relief, im not allowed any cos of my daily meds?
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medmisfit
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PostSubject: Re: Just diagnosed with IIH 2013   Mon Jan 28, 2013 5:03 pm

Pain meds don't usually help IIH until you're taking prescribed narcotics. Unfortunately, caffeine and over-the-counter meds can cause rebound headaches that can be worse than the IIH..I learned THAT the hard way! I would suggest talking to your neuro about your coffee intake..caffeine can help take the edge off, but you may be looking at a rebound headache if it gave you that much relief. I think it's a matter of what your body is used to ingesting. I'm extremely sensitive to meds of any kind, so it takes very little to cause a rebound headache for me. It's another one of those things that vary, which is why I recommend a journal and talking to your neuro or whoever is managing your IIH.
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PostSubject: Re: Just diagnosed with IIH 2013   Tue Jan 29, 2013 8:40 am

Thanks Admin, you sound like my mum lol x In a very posistive way, i love my mum Very Happy xxx I am very sensible but it scary when it gets to that pain point when you think i would literally do anything to make it stop.

ps Admin, your quote in life is very similar to mine "Some people walk in the rain, others just get wet" Very Happy
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PostSubject: Re: Just diagnosed with IIH 2013   Tue Jan 29, 2013 3:19 pm

Your mum must be an amazing woman..LOL..I like her already ;)

Honestly, I remember the unbearable, overwhelming pain and know exactly what you mean. I wish we had an easy fix, but it's really just a long process of trial and error. State of mind definitely helps, so I'm glad you've been able to keep your sense of humor..dancing in the rain never hurt anyone!
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PostSubject: Re: Just diagnosed with IIH 2013   Wed Jan 30, 2013 6:30 am

Hi Automum, and to the forum.

Sounds like you have a good handle on your situation. Good for you. I hope your weight loss continues and you get to feeling a whole bunch better soon.
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