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 Jenn - diagnosed 2010

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jenn
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PostSubject: Jenn - diagnosed 2010   Wed Mar 16, 2011 11:38 am

i was diagnosed just under a year ago and this far i have suffered from all the usual symptoms but over the last 2 weeks i seem to be on a downward spiral. :(

iv gone from being able to cope to a point where the pain reduces me to tears.. over the last 3 days i have been at an all time low where im vomiting, going very light headed, nose bleeds ( none for 2 days so fingers crossed i wont get that agian), my eyes feel bulbus and sore to the touch, my body feels phsyically stiff and achey.

im convinced im not coming down with a flu or cold as im not sniffly or bunged up

on monday afternoon i called my gp who contacted my neuro, who gave my gp a list of meds to prescripe for me (ibruprofin, codine and anti sickness pills) i cant say these tablets have done any more then stop the vomiting although i do still feel as though i could vomit

i guess what id like to know is if anyone else has gone through a period like this? trying to explain how im feeling to others is a bit hard they simply dont understand its more a case of nodding and sympathetic smiles which leave me wanting to cry scream shout which im sure most can relate to

its exactly 2 weeks to the day since this headache started i saw my neuro on thursday last week who told me that the swelling to my eyes was back after only the month before i was told by the eye clinic it had gone! other then that he seemed fairly happy with how i was and just booked me back in for another app in 4 months. i have since spoken to an on call neuro like my gp advised me to but he was very little help..i just dont know how much more i can take of feeling like this or the time im having to spend in bed!

if anyone has anything they feel might be helpful please do share.
jenn
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PostSubject: Re: Jenn - diagnosed 2010   Wed Mar 16, 2011 2:10 pm

Jennn, I too have had exactly the same things as you in the past, so I know how you feel. As everything Neuro wise with the IIH was stable, my Neuro referred me to ENT, who then found I had developed allergies, and had sinus problems, and then prescribed a nasal spray. Since then I've had no re-occurences of the nose bleeds, nausea or vomitting. I don't know if this is your problem too, but it might be an idea to ask if those symptoms could be related to sinus problems and if so have them look at that.

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PostSubject: Re: Jenn - diagnosed 2010   Wed Mar 16, 2011 5:44 pm

il be sure to ask but im not sure its connected as i use nasel sprays in the summer for hayfever and its not helped matters much previously..iv still had nose bleeds.. im off to see my gp tomorrow so hopefully they will be able to help me out ,i think 2 weeks of feeling like something no one wants to step in and what will be 4 days of feeling like death warmed up if more then enough..il be sure to keep you posted and hopefully leave a life line if anyone else was to suffer anything similar Smile

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PostSubject: Re: Jenn - diagnosed 2010   Wed Mar 16, 2011 5:59 pm

Good luck with your GP tomorrow and I hope he has an explanation for you. I know how frustrating it is when you have something, and no one seems to have a logical reason for you to, put your mind at rest at least.
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PostSubject: Re: Jenn - diagnosed 2010   Thu Mar 17, 2011 2:46 am

Jenn, hope your GP has some constructive answers for you. Keep us posted!

I've been feeling generally off the last few weeks, too. More frequent headaches, blurry vision, some pretty extreme dizziness (and therefore nauseated). I was thinking tonight, though, about the weather here in Ohio. We've had very rain stretches every 3-4 days, then a few days of sunshine (typical spring), and I finally started thinking that might be it-- barometric pressure headaches. As often as the weather has been up and down, it'd be no surprise I've felt so pitiful. At least, that's what I am hoping is up for now. :suspect:

Anyhow, just wanted to share that if others are going through ups and downs right now...

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PostSubject: Re: Jenn - diagnosed 2010   Thu Mar 17, 2011 3:52 am

I have also been having more problems the last few weeks. The seasonal changes of winter to spring and fall to winter always increase my symptoms. Each change seems worse then the one before and this one just beginning has already produced some brutal days. I hope they can find whats causing the problem and give you some relief.
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PostSubject: Re: Jenn - diagnosed 2010   Sat May 07, 2011 9:42 pm

sorry iv not been back since posting this topic.. iv not been up to coming online all that much..

just to update really im still suffering the same head ache i have been since the end of feb begining of march! as im sure you can all relate to these bloody head aches have a habit of being a pain in the pants but this one just wont shift.. my gp has been intouch with my neuro and didnt really get anywhere other then telling me to take my pills and rest up.. but how long do i need to put up with this till something is done about it?

the one thing my neuro resorts to is the one thing i fear the most..LP's, it may seem like a silly thing to fear but having had an epidural go serverely wrong and ending up with spinal leakage has left me very nerv.ous about having needles in my back and having had a fair few failed LP's its no longer an option.

has anyone else out there been in my possition, or similar to it? i wouldnt say the head ache im having has been extreme all the time but i have had no release from it at all.. i havent had a pain free day in weeks (well months)

im not going through any stress or anything like that, that could add to the pain so im kind of at a loss and dont know what to do. im due to see my neuro in about a month and im worried about what the outcome is going to be or if i will be fobbed of :(
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PostSubject: Re: Jenn - diagnosed 2010   Wed May 11, 2011 5:09 pm

I'm so sorry to hear that you're struggling! In my experience the pain seems to ebb and flow..it can DEFINITELY be overwhelming and last for long periods of time. Unfortunately, my neurosurgeon always wants an LP too, and sometimes draining the fluid is the only relief I get.

That being said..I hate LP's!!!! I've also had some horrible experiences and use it as a last resort. I've found that focusing on my breath, staying relaxed, and requesting no students or residents improves my experience..luckily, my neurosurgeon also will provide an anti-anxiety med if I don't think I can make it.

I haven't been able to find a med that I could tolerate (or that helped), so I've had to rely on some alternative techniques. I find more relief when lay on my side at 45-60% angle..bending, straining, or leaning back makes my pain worse. I also use hot and cold packs..it depends on my pain and mood, but they both can take the edge off. I can also delay the major headache pang a lot of times, if I chug something high in caffeine as soon as I notice the symptoms starting.

If you're totally against the LP and can't find ANY relief, I would continue to follow up w/ GP, ENT, or NEURO. Also, make sure you're getting your vision checked more frequently..when you have severe pain w/ swelling of optic nerves you have to be very careful and protect of your vision.

Hang in there and keep us posted!!
Julie
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