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 Sammie

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Sammie
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PostSubject: Sammie   Sat Feb 05, 2011 7:27 am

Hi my name is Sam and I have iih. I am a 30 year old mother of 4. I am also married. After going to several different doctors I was diagnosed..sleep apnea or just being over weight is the cause.I have had one lumbar puncture and my symptoms went away for about two days. My vision is blurred sometimes but I'm mostly annoyed by the heart beat wave sound in my ear and I'm sick of taking diamox.i have to go back to the doctor on Monday.I think I will try and repeat the lumbar puncture because I don't want the shunt or fenestration. think I'm going through a depressed state because i didn't think anyone understood how I felt and I'm glad to find this group. So hello everybody and I don't mean to start off so down.
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Laura
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PostSubject: Re: Sammie   Sat Feb 05, 2011 11:46 am

A big welcome Sammie!

Don't apologise for starting off down, it is understandable how you are feeling, you will not being going through this alone and will have all the support you need here in the forum!

I hope on Monday the Doctor will be able to ease some of your symptoms a lot more so you will feel at least a little more yourself! Good Luck and let us know how it went!

Laura x


Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less - Marie Curie
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Heidi
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PostSubject: Re: Sammie   Sat Feb 05, 2011 2:32 pm

Hi Sammi and a warm to our group. I understand exactly how you feel, so don't apologise for it, YOU should never apologise for the way you feel because YOU can't help feeling low. To any of us with this condition we feel not only low but totally misunderstood.

I hope another lumbar puncture will ease your symptoms at least, and that will put things back on an even keel. I know you don't want the shunt but it is an option you shouldn't rule out, as there has been a lot of success with them. You are right to consider all options and make sure that your Doctor goes through them thoroughly with you, and if you can take your husband with you, so you can discuss between you what you feel would be right for you.


Last edited by Heidi on Sat Feb 05, 2011 10:24 pm; edited 1 time in total
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PostSubject: Re: Sammie   Sat Feb 05, 2011 6:11 pm

Hi Sammi,
First of all you should know that you are not alone. We all know how you feel. It is an isolating disease, and even when other are around I feel alone. I think it is because it is hard to make other know exactly how we feel. My doctor asked me one time, how I felt, and I told him I don't know anymore, I have no idea what normal is as I haven't felt normal for years. I get down alot because I feel like I am a burden to all those around me, but the one thing that keeps me going.............is my faith is Jesus Christ. I know that in my darkest hour that he is with me, he knows what I am going through and he will get me through it. I was dx in 2004 but had the symptoms for 2 years before that. I make the best that I can out of my life, even though it is one of constant pain, I always try to find good in everything. I hope and pray that your drs can get you to a place of tolerence, and I will pray for you daily. I am always here to lend an ear, so don't be afraid to say how you feel. God Bless and I am here if you need me.

LaDonna
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Sammie
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PostSubject: Re: Sammie   Tue Feb 08, 2011 5:29 am

Thank you guys for making me feel so welcome thank you .Today was a tough day. I had been off of my diamox for 4 days which was horrible because walmart failed to let me know they had to reorder the medicine and it wouldn't be in until Monday.I was okay until this morning when my head started to feel like somebody hit me with a bat.I went to the doctor today and she wants to do a head shunt on me and it seems as if she just likes to do the surgery.she didn't seem to have my best interest at heart.I asked what other options did I have and she said that's about it at this point. what point exactly I'm at, I don't know. I told her my eyes were starting to hurt a little and maybe a little shadow but I've been off the medicine for days and as long as I take the diamox I don't have headaches really.so is there other options besides surgery that can help me.my body just dosent do well with surgery.What do you guys think?
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