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 here comes the storm

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sammyjo
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PostSubject: here comes the storm   Fri Nov 23, 2012 12:56 am

i have had that typical iih head ache since a week after my last lumber puncture a montyh ago and now the double vision has started pain killers arnt working now which we all know can only mean one thing there is a lumber puncture on the horizen....

i just hope i can hold out long enough untilll my surgigal consult on 11.12.12 so he can see me at my worst and hopefully my surgery will come faster.. i just hope i have the strength to wait out the storm and not give in and go for a lumber puncture

sorry if this dosent make sence did it with one eye closed coz when i close one eye the double vision gose away

[You must be registered and logged in to see this image.] and every pray i can think of that i can ride this storm x
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sammyjo
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PostSubject: Re: here comes the storm   Fri Nov 23, 2012 1:37 am

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Aliviamom11
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PostSubject: Re: here comes the storm   Fri Nov 23, 2012 4:57 am

I understand..hugs and fingers crossed. fingers crossed hug


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acerousme
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PostSubject: Re: here comes the storm   Fri Nov 23, 2012 8:18 am

im sorry dollface fingers crossed

I hope everything works out for you


The children almost broken by the world become the adults most likely to change it
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BananasMom
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PostSubject: Re: here comes the storm   Fri Nov 23, 2012 11:22 am

I'm so sorry, sweetie ... fingers are crossed for you here too! *hugs*
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sammyjo
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PostSubject: Re: here comes the storm   Fri Nov 23, 2012 3:18 pm

am i doing the right thing in resisting a lumber puncture so the surgeon at my consult can see it at its worse or am i being stupid ?????
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PostSubject: Re: here comes the storm   Fri Nov 23, 2012 6:19 pm

that's a good question and a tough call. on the one hand, if you have the medical records showing you went in and also how many times you've gone in for LPs, and what your ICP was for each one, that demonstrates how significant your problem is, and also that you coudn't wait for the consult, you had to get one urgently for your disabling symptoms. if you paint it that way, it shouldn't detract from the urgency of getting a shunt. show how frequently you've had to have taps, and predict when the next one will be if you don't get a shunt. but there is something to be said for the clinical presentation that the doc sees when you go in for that consult; when you are right in front of him obviously very ill and having visual problems. you could call the office and ask them what they prefer; if they want you to be at your worst so the doc can see it or if they recommend you get the tap if you need it.
Deb
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sammyjo
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PostSubject: Re: here comes the storm   Fri Nov 23, 2012 6:24 pm

i dont have a copy of my records but he dose i found out from my nurolagist recently that i have had 48 lps i thought i had had maybe 30 but i was wrong i do i know my pressure is usually 39+. i think i am gonna wait if i can coz i really dont wont to have to wait for AGES for my surgery date a 10yrs journy is quite enought x x thanks for replying deb you always give me good advise and a comfort x
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sathi2012
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PostSubject: Re: here comes the storm   Fri Nov 23, 2012 6:34 pm

Sorry you are suffering a lot :( ..
I was diagonised only when I had a double vision, before my LP.
So my Neuro suggested a 3 day course of steroids(low dose) to reset the optic nerves(thats what he said), I took it for a day and after a whole nights sleep I was alright(double vision was gone but distortion was there which was manageable), then he put me on Diamox after an LP of opening pressure 32..
It worked for almost 10 months ...I never had headaches , my prob was only dizziness and diamox...
Now I got it again when I stopped taking diamox when Neuro Opth mistook it as remission...
Dealing with dizziness again and trying to manage..
Hope you feel better...
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sammyjo
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PostSubject: Re: here comes the storm   Fri Nov 23, 2012 6:53 pm

i hoope you feel better soon aswell seems this month is a bad one for everyone for some reason x every one i have spoken to this month seems to be suffering x
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PostSubject: Re: here comes the storm   Fri Nov 23, 2012 8:07 pm

The only thing that concerns me slightly with putting off the LP is the possibility of doing more, or worse damage, to your vision prior to the consult. If it were me, I would probably stay alert to it and go in for the LP if anything was different or worsened as far as the vision goes. *hugs*

Edited to add: ... and I'm sure you're probably aware of that and are doing it. Smile Just had to put it out there, hun.
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sammyjo
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PostSubject: Re: here comes the storm   Fri Nov 23, 2012 9:46 pm

i am huni i am keeping a VERY close eye on it i mean i wont the surgery but not at the expence of permanent damage. when mt icp gets to a certain hight one of my eye wonders in my head (lazy eye) never usually have lazy eye if this happens i will be straight off to A&E X
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Sophiasmom
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PostSubject: Re: here comes the storm   Fri Nov 23, 2012 9:53 pm

Dear Sammy;
I am so glad to help. it is the only thing that brings any meaning to my own suffering. I think you are right, this is a bad month, not sure why. hang in there!!
Deb
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sammyjo
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PostSubject: Re: here comes the storm   Fri Nov 23, 2012 10:08 pm

deffernatly we will all have to be prepared for next november lol x you hang in there too x x
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Aliviamom11
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PostSubject: Re: here comes the storm   Sat Nov 24, 2012 7:02 am

Sammyjo,
I think the er is in my near future...rit hurts to blink


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sammyjo
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PostSubject: Re: here comes the storm   Sat Nov 24, 2012 11:02 am

marlana
i am so so so sorry that ur hurting good luck at the ER x x
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PostSubject: Re: here comes the storm   Sat Nov 24, 2012 1:47 pm

Sammy I wouldn't put off having an LP because of the risk to your vision. The fact that you may need another one so soon after the last one, shows that your csf pressure isn't under control. One of the signifiers of chronic IIH is the need for multiple Lps, which doesn't happen as much in acute IIH. If your raised pressure is causing the same symptoms you had before, contact your Neurologist. Don't leave it to chance that your vision won't be affected while you wait till your next appointment.
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sammyjo
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PostSubject: Re: here comes the storm   Sat Nov 24, 2012 1:51 pm

thanks heidi, i am laning towards going for lp as in the last 24 hours my symptoms have got quite alot worse x
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PostSubject: Re: here comes the storm   Sat Nov 24, 2012 4:14 pm

i should probably have strted new blog for this but hy ho
i have got myself in a bit of a state, not just cos of the pain and lack of hearing but. the pannic that the surgeon that i am due to meet on the 11th wont help me i mean i have had this for 10yrs lps NO HELPwell teperarally help like fr 1.5 month) frusemide NO HELP toprimate NO HELP lamotragine NO HELP
i know this sound dramatic but i think that if i have to endure another year this i dont think i will survive all this pain just cos some silly bitches attacked me when i was 14 i havent had meany days of relife inbetween.i cant rember what real life feels like anymore
i know this sounds stupid but i just really wont the surgery i wont to feel like something is being done just wonna feel a little bit of hope again. like when u start a new med and ur like yeah this one is gonna help... but it never has but this has to work surgery has to work its my last resort this stupid desease is ruining my life it has made my epilepsy worse (had epilepsy my hole life) i just fear that i will meet this surgeon and he will be like you dont need sugery we will try BLAH BLAH blah
I WONT TO FEEL LIKE I AM WINNING LIKE I AM BEATING IIH. i just wont it to be over or at leats for me to be able to say i have low to moderate pain. i just wonna wake up and be able to hear and see and not have to hold something so i dont falll downwith the pain

so sorry for wingeing i am sure you guys have it worse i am sorry for moaning trypeing whilst crying and in a state is not a good idea coz this is what u get an emotional rambble [You must be registered and logged in to see this image.]
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Sophiasmom
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PostSubject: Re: here comes the storm   Sat Nov 24, 2012 6:16 pm

Dear Sammy;
I am so sorry! I understand how frustrated you are and the anxiety of meeting a new doctor and having no idea how they are going to be. your IIH is much worse than mine, and I feel so bad for you. that neurosurgeon has got to help you! just tell him all about your symptoms. write it all down ahead of time so you don't forget to tell him any details. tell him about all the treatments that haven't worked. how this makes your epilepsy worse. especially tell him how frequently you need those LPs. he couldn't possibly say no to a shunt. please hang in there, it's only 2 weeks away! get an LP if you need to for your symptoms, just make sure to tell the surgeon all about the symptoms that led you to do that. if you are already getting them back by the time you see him, that says a lot. you have made it through the last 10 years, you are very strong. keep going sweetie, you will find it. this disease teaches us endurance.
Deb
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sammyjo
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PostSubject: Re: here comes the storm   Sat Nov 24, 2012 7:04 pm

thank you for the reasurance deb x x
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sammyjo
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PostSubject: Re: here comes the storm   Sat Nov 24, 2012 7:14 pm

i think that panic has over taken me and i cant seem to snap out of it x
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PostSubject: Re: here comes the storm   Sun Nov 25, 2012 5:47 am

take a deep breath and realize that this panic is probably in part a symptom of increased intracranial pressure. it makes me very dark emotionally.
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are you hyperventilating? when my pressure goes really high, my breathing changes, I breathe faster. I think it is a physiological response to attempt to lower the ICP. it's probably best to let your body do that but know that it might make you feel more anxious than you are, just because of the feeling of fast breathing. meaning it's an association.
but if your ICP is that high then you might need an LP.....:(
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sammyjo
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PostSubject: Re: here comes the storm   Sun Nov 25, 2012 11:32 am

i do need lp i went to AE last night but the docotors on last night seemed to think it was jjust a migrain i keept telling them just look in my eyes u will see my discs will be swolllen but he wouldnt he gavre me pain killers and sent me packing... i will wait till mondaY AND RING MY SPECIALIST a hot bubbly bath seemed to calm me a bit this morning x
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PostSubject: Re: here comes the storm   Sun Nov 25, 2012 10:25 pm

Awww Sammy ,
I know that feeling. I had a bad experience once before all they gave me was tylenol. Hugs


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sammyjo
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PostSubject: Re: here comes the storm   Mon Nov 26, 2012 12:05 am

i know the lack of knoledge is absoultly STUPID. nice to know people feel the frustration thanks marlana x x
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PostSubject: Re: here comes the storm   Mon Nov 26, 2012 1:36 am

how awful I'm so sorry for the ignorance of my colleagues. I have to say I knew little about IIH until I had it. but as a pediatrician we didn't get any training in it, so I don't know what the ER docs etc got, you would think more than me. if it helps at all, I intend to do what I can to increase awareness. I'm trying to publish a hypothesis paper right now that discusses IH, in relation to two other conditions. at some point I will probably approach the IHRF.

but, you would think, if you said to the doctor "I have IIH look for the papilledema in my eyes" that they would do that and pay attention and treat you appropriately. since he ignored you and said it was a migraine, in my book that is negligence and malpractice, and I would complain to the hospital. that person is a poor excuse for a doctor if you ask me. just going through the motions. maybe complain to the medical board too. what a joke. the thing is, that even if you hadn't said anything, the STANDARD physical exam for a person presenting with a headache is a full neurological exam and fundus exam, so he should have looked in your eyes regardless, and found the pap without your prompting.
Deb
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sammyjo
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PostSubject: Re: here comes the storm   Mon Nov 26, 2012 12:03 pm

thank you for for your great attempts to give the mediical knoledge good luck with you enevour i will keeo ur challenge in my prays.

pilgrim hospitail boston lincolnshire are excuse my french but poo. when i have lps there they let traines do it and asuure me they have had plenty of practise and at the top of thier class 9 times out of 10 they have to atteppt to place the neddle 15 times i have had nerve damage alot infections not enough fluid taken off oh and not for getting the magial time when one of them snapped the needle in to my spine x x xhence why my specialist and now my neurosurgeon is from nottingham hospital x
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Aliviamom11
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PostSubject: Re: here comes the storm   Tue Nov 27, 2012 2:39 am

We all have that one bad experience..i have a cyst filed with csf in my back..i have to have it cut and drained... I'm just waiting until I have surgery and they can do what they want.. im to their point where I just want to enjoy some part of life.. meet the person with vodka to go with my lemonade and drink and have a good time. thank you :lol1:


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sammyjo
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PostSubject: Re: here comes the storm   Wed Nov 28, 2012 11:37 pm

28th of november today and actually feel like i am gonna die my6 head feelsd like its gonna pop my ears r leakining some kind of water and i cant get to the hospitail AHHHHHHHHHHHHHHHHHHHHHH
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