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 Lights flickering

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Remini1
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PostSubject: Lights flickering   Tue Mar 22, 2016 7:19 pm

I have noticed that the lights in a room with dim and brighten.  I have asked people that in the room with me and they do not notice anything.  I am not sure if it caused by my headache, pressure, or if I am going crazy.  Anyone else experience this. Help
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medmisfit
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PostSubject: Re: Lights flickering   Wed Mar 23, 2016 2:01 pm

Dimming vision can be a symptom of the vision issues caused by IIH, so I would check with your ophthalmologist. Sinus, allergy, weather changes, etc can increase intracranial pressure, but best to get it checked out and make sure there's no papilledema or changes.
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PostSubject: Re: Lights flickering   Wed Mar 23, 2016 7:18 pm

UuI have to agree with Julie. It's best to get in touch with either your Ophthalmologist or Neurologist and have this checked out. I would also make a note of when it happens and for how long. and from the first time it happened to present , so you can give them a full picture and understanding. Please come back and tell us how you got on.
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Remini1
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PostSubject: Re: Lights flickering   Sun Apr 03, 2016 12:59 pm

I did get checked.  Yes, it was pressure.  It is so scary when things dim.  I am doing much better.  I am seeing much better now.  Thank you for listening.
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PostSubject: Re: Lights flickering   Sun Apr 03, 2016 6:18 pm

Anytime, so glad you're doing better! It is unnerving, but always best to check it out. Let us know if you have any other questions or concerns.

Take care!
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Remini1
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PostSubject: Re: Lights flickering   Sat Apr 16, 2016 6:09 pm

Here is my lastest update.  I did get checked.  I am seeing better.  I went to Spokane and came back home.  Now home is Helena Montana at  5300 feel in elevation; Spokane 1800 in elevation.  The migraines came back with a vengeance!  I called my neuro to see if  need to decrease or increase Diamox when I have to travel to Spokane.  She told me that normally it would be an increase but I am taking so much now I can't increase any more.   She put my on Topamax 50 mg with the Diamox of 1500 mg.  I am starting to wonder if this will ever end.

My daughter is 24 and she is now being check for Pseudo Tumor Ceribri.  She is having the same symptoms.  Is this genetic?
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PostSubject: Re: Lights flickering   Mon Apr 18, 2016 2:39 pm

Hopefully the addition of Topamax will help control things when your travel. Otherwise, you may want to look into a shunt. I don't recommend it as long as you can control symptoms with diet and meds, but, if they don't help and you travel, at least is would help stabilize your ICP.

As far as genetics, that depends on who you ask. I always thought it was interesting that my great grandmother leaked spinal fluid through her nose and a cousin on that side of the family also had an episode of IIH, but I keep being told it's not genetic. There are some tests being done and I think the Global Genes Foundation had someone looking for families of rare disease for some sort of trials. I honestly don't think anyone knows enough about the disease to tell us definitively.
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PostSubject: Re: Lights flickering   Wed Apr 20, 2016 3:36 pm

I have it and my 8 year old son does also.  my mother has all the symptoms and is in her 70s.  she became ill at 17.  we don't get papilledema in our family so it goes undiagnosed.  I only figured it out because I'm a doc and very persistent.  when I first became ill I didn't know what to do because I just had severe brain fog and I knew I had come down with the family "mystery illness" and I didn't expect that I would be able to figure out what it was because no one before me had ever been diagnosed or gotten better.  I'd heard stories about my great aunt, and about my great grandmother and her siblings.

here's the clue: everyone in my family with it, has the same JAW.  I went into remission when I had JAW surgery.  my son showed remarkable improvement from his autism when he had JAW expansion.  he and I have had significant improvement in our symptoms by treating our sleep apnea.  I believe that in our family, our jaw anatomy leads to not only sleep apnea but to compression of the jugular veins.  I suspect that opening up the space behind the tongue makes room for the jugular veins to allow CSF drainage.  It might not be the same thing in other familial PTC but it's something to consider.  we don't look like we have malformed jaws.  the face can form in such a way during development, as we attempt to keep the airway open, to make it appear that the jaw is not recessed.  but there will be a sloped forehead.  also I have a very large tongue in the back, taking up space behind the tongue.  we all have very narrow high arched palates, and mouth breathed from infancy.  

does your daughter look like you?

we are also all very chemically sensitive, and the chemical exposure causes the PTC symptoms too.  I think this is mediated by a genetic problem, separate from the jaw problem.
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Remini1
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PostSubject: Re: Lights flickering   Wed Apr 27, 2016 4:56 am

Thank both of you.  Yes my daughter does look like me.  When I talked to her tonight she said she remembers growing up with me always having a headache. Both of our jaws pop often.  It could explain it.  I agree that more research needs to be done. 

I found two active clinical trials for a stent in the venious sinus. One in Canada and one in New York at the University of Cambridge.  The catch is I have to get my neruo to confirm that I fit for the study.  I found the first one at John Hopkins in 2014 and she told me no.  She didn't want me to be patient number 10.  Maybe now.  I will see her again in July. 

Thank both of you for being here.  hug thank you
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Sophiasmom
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PostSubject: Re: Lights flickering   Sat Apr 30, 2016 5:29 pm

one of the best places for the stent surgery and other related surgeries is Barrow in Phoenix.  you could go for a consult without having to be in a trial.

forgive me if I missed something on a different thread.  have you had MRV of brain and neck?  that would show if you have narrowing anywhere, and I believe these are necessary standard procedures to evaluate after IIH diagnosis.  I was going to go to Barrow but my MRVs were normal.
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Remini1
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PostSubject: Re: Lights flickering   Mon May 02, 2016 1:16 pm

You have not missed anything.  My MRI showed Empty Sella but not narrowing anywhere.  My last MRI's we done last fall.  Just a hope to get this to stop.
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Sophiasmom
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PostSubject: Re: Lights flickering   Mon May 02, 2016 3:36 pm

an MRV is not the same thing as the MRI that found your empty sella.  the MRV looks just at venous drainage.   it doesn't sound like you have had MRVs.
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