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 Update For Kristine

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AmethystRiver84

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PostSubject: Update For Kristine    Mon Sep 03, 2012 6:40 pm

June-Aug 2008 220 lbs
I was told I had Pseudotumor cerebri in December 2008 Weight loss will cure it (Dr.'s LIE )

Lost 35 lbs November 2008 - Febuary 2009
185lbs 2009

Maintained weight 185lbs 2008-2012 …. All Symptoms were gone (I was cured??? Right?)

Started working at preschool November 2009 (still no problems) 185lbs

Nov. 2011 - April 2012 185 lbs (started being more active, walking dog, using the wii)

June 24, 2012 185lbs .. Headaches started to come around slowly, by July 2012 Headaches were everyday.

July 2012 Went to reg. Dr. said I had high blood pressure, and started me on meds for that, said she thinks that’s what is causing headaches. (uuugghh)

July 2012 185lbs Appointment with Ophthalmologist She said the pressure was back on my optic nerve, and it was again causing swelling. ( what can I do about this Dr.? ) Her answer Exercise loose weight. Make another apt for visual field see you later (uugghh, thanx for the help doc.)

July 2012 185lbs Diagnosed with Idiopathic Intracranial Hypertension (IIH) same as Pseudotumor cerebri a lifetime diagnoses that weigh-loss MAY help with symptoms. No known Cause, No Cure.

July 16th Neurologist Pathak (on phone) said no spinal tap, no Diamox, start Topamax (I was in ER)

July 18th went back to ER in so much pain, and demanded a Spinal Tap and the ER Dr. changed me to Diamox and off Topamax. (Thank You)

July – August 2012 started getting better slowly over time with the help of Diamox, Made big changes to what I eat. Cut out carbs., bought organic, changed to whole grain wheat everything, stopped adding salt to anything at all and bought low sodium. (everything has salt in it ) Stopped buying Processed food/ pre packaged. Started READING Lables. I drink 1 cup coffee in AM with little sugar and reg. non dairy powder creamer (doesn’t have all the stuff added to it), then only Water all day everyday.

Lost 4lbs between July 18th and July 31st
181lbs July 2012

Aug. 16th 181lbs ... Second Appointment with Ophthalmologist Dr. Norton did visual field My Left eye is almost completely blind other than a small part in the center of my eye. Right eye is good, no changes as of 2009.

Aug. 20th 2012 181lbs .. First Apportionment with Neurologist (he has been on vacation) No help at all, Caught him up on what meds I am taking and had to ask him to do blood work on me to see how my body is handling the meds. (he said it wasn’t to important to do the blood work, but if I wanted to he could go ahead and send me to the lab)

Lost 7lbs between July 31st and August 31st
174lbs Aug 31st 2012

Today September 3rd 2012 Update: I am at 174 lbs, Still on Diamox, no changes in eye sight, still taking High blood pressure meds Hydrochlorothiazide 25mg. Have not needed anymore Spinal taps. Still working on loosing weight exercising, and continuing to eat healthy and read labels. Headaches are a slight pain off and on, but don't seem to last long and not bad enough to take pain meds for. Also starting slowly again using the Wii I do wii fit so I can work at my own passe, also looking forward to getting out and walking the dog again, I have been working, so far so good although I do find I am more tired at the end of my days than I was before.

Hope all of you are doing well.


Kristine / AmethystRiver84
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Wylee
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PostSubject: Re: Update For Kristine    Mon Sep 03, 2012 9:14 pm

Hey Kristine. Just like board games, often IIH is 2 steps forward and one step back. I do hope you might be able to find a more knowledgeable ophthalmologist. It is unfortunate they haven't been able to save your sight
in BOTH eyes. Maybe there is something they can do for you?
Weight loss can be effective in IIH. But, it isn't the cure!! Of course it is more healthy and it sounds like you about have that part figured out. Good for you. Do pay close attention to any signs of your eye pressure rising. I will be keeping my fingers crossed all that will stay behind you.
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medmisfit
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PostSubject: Re: Update For Kristine    Mon Sep 03, 2012 11:57 pm

Kristine, I agree..glad you're getting healthier & able to lose weight, but I'm concerned about the vision loss. Does your ophthalmologist have a plan or at least monitoring your sight more closely? You definitely want to get IIH under control before loss becomes permanent, so I'd make sure they're on top of it. It sounds like you've been effective in motivating them so far..hang in there!

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PostSubject: Re: Update For Kristine    Tue Sep 04, 2012 2:56 am

Congrats on the lessening head pain and losing weight. Sorry to hear about your sight. I think that it is definitely a priority to get that under control and follow up with neuro-op doctor visits. I am glad you insisted on the blood work, too. I believe it is very important to be your own advocate and to insist on some things when it comes to the doctors. YOU know your body best. The doctors know "textbook" cases relating to certain diseases but they are really not well educated (for the most part) with IIH.


Continue educating and advocating for yourself.

hug
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AmethystRiver84

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PostSubject: Re: Update For Kristine    Sun Sep 09, 2012 5:57 pm

Thank you everyone for the inspiration. No my ophthalmologist has no plan for me other than to loose weight, and I fear neither the opthamologist or neurologist have an idea what Im suppose to do, and I am at a loss other than what I read on here for ideas, I have no idea what to do. I am very scared I will loss my eye sight before all is over. I have looked into other Dr.s but because of my insurance I have yet to find another that will see me. I will continue to search, but I wish I had more answers or a better direction for what to do next. I don't want to even go back to these Dr.'s because I do not feel they are helping me. and as of Thursday September 13th my headaches have been slowly coming back, with me already taking Diamox, Im not sure what to do about it????


Kristine / AmethystRiver84
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medmisfit
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PostSubject: Re: Update For Kristine    Mon Sep 10, 2012 4:12 pm

Kristine, I'm so sorry you've been left dangling in the wind! I would definitely let your doctors know that the pain in coming back..give them an update on your vision too. Maybe they'll be more willing to do something if there hasn't been any improvement or it's getting worse. Weight loss can help, but it's rarely a cure for anyone long term. Unfortunately, we have to be our own advocates a lot. See if any of the print outs or guides have any useful info in talking to your physicians..you may have to educate them until you can find other resources. You may want to ask your insurance company for list of physicians available in your area, then you can call their office to see if they have any experience w/ IIH. It can be tedious, but rewarding if you find someone that knows IIH. Hang in there and let us know if we can help!

hug
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PostSubject: Re: Update For Kristine    Mon Sep 10, 2012 7:50 pm

Kristine I am so sorry you're having such a bad time, I feel for you and know how frustrating and worrying this is. Congratulations on losing weight hug but you are right that the problem with your sight needs addressing. I think it might help to get in touch with The American Foundation for the Blind One of the things they do is to advocate on behalf of the rights and interests of Americans with vision loss. They may be able to help and advise you.
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Wylee
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PostSubject: Re: Update For Kristine    Tue Sep 11, 2012 7:04 pm

Kristine, you may end up having to go into Sacto or Davis to find a team of docs experienced in dealing with IIH. I would suggest looking into the UC system. Teaching hospitals tend to be a good source of knowledgeable docs.
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