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 Hi, I'm Dot and it's been a whirlwind of several years.

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PostSubject: Hi, I'm Dot and it's been a whirlwind of several years.    Wed Feb 04, 2015 9:18 pm

YOLO is not what I thought it would be.  You Only Live Once?  Well, I look back and wonder, why didn't I get it.  Where did I go wrong and how could I have prevented this horrific outcome.  Thankful to be alive but not like this.

So, it started in 2007 on my birthday when I decided it was time to get my eyesight checked by my best friends husband.  What a gift.  I was referred to a retinal ophthalmologist and than a Neuro Ophthalmologist with many tests along the way and told I had Pseudo Papilldema and Migraines.  My eye was faking that it was trying to have a tumor behind it.  What they failed to tell me until a year ago was that my spinal pressure was 200 vs. the normal 150-180.  Yes, I'm overweight and could lose more than several pounds but I had no clue except my eyes was playing tricks on me.  Seven years ago what you could find on the internet and what you can find today...night and day difference in being proactive in an advocate for yourself.

So, time lapsed--felt like Menopause hit me early only to have Mother's Day of 2013 come and I have complete heart block.  Nothing like feeling like your dead but awake at the same time and incapable of doing nothing.  Well, after that, I quit ignoring my body, realized, menopause wasn't here and couldn't be here and something is still wrong.  It did take me until November to realize it after attending a Hockey game and getting breathless and getting into the docs in December only to be told I am hypothyroid.  Well, it didn't change a thing.  Tinnutis didn't disappear, lethargic, fogginess and so much more.  So, they referred me to a neurologist that said, you now have constant migraines vs. migraines.  Needless to say, work stopped December 2013 to date.  They tried Topomax which just increased the freezing sensations on half of my body and gave me this fire ant feeling as well and even worse headaches.  So, I went back to my regular physician who referred me to a rheumatologist because they saw I care the gene from the spinal tap 7 years ago (never told).  Well, after many tests--nothing.  So, I went to another neurologist who did muscle tests (hypersensitive on one side)--already new that and told them.  Then, seizure clinic and finally the spinal tap that I asked for a year ago because of my history.  Pressure is now at 272 and the neurologist put me on Diamox (for Pseudo Tumors) until I can get in to see the Neuro Opthomologist again from 7 years ago.  Oh, and a year ago, I asked them to look at my baseline and dialate my eye to see if it changed.  The opthomologist said no, she didn't need to as there was nothing wrong with me.

WHAT :shock:   REALLY

So, Topomax shuts my system down---at least an allergic reaction.  Diamox is back to Fire Ants in the most in opportune times in the gas foot when I need it and the other hands and feet as well, especially when I use them.  But, I have until Mid March before seeing the Neuro Opthm. so I don't know what to do.

On top of all of this.  From a childhood accident at 3, I poked one of my eyes out with a stick.  So, I only have the one eye left and have to use cheaters which don't do that well these days.

And, no MRI for me with a Pacemaker.

Anyone else have similarities.  What did they do instead for scanning the brain with a Pacemaker?  How did you handle fire ants/pins&needles until you can get in to see doc.  Anyone else with mono vision dealing with this?  I am not a chance girl because of it.  I have kids to raise and that's my priority after my health. 

Would love to hear other's input on how to handle this 21 months--Exhausting.  Not working--going insane--meds reactions--feel like curling up in a cocoon and never coming out.  Oh--does anyone else get rushes that last 1/2-2 hours? Then, pretty much pass out.  Checking my heart but they can't see anything there and my adrenal gland was checked a year ago.

And, if they don't diagnose IIH--then, what else would it be.  Not anything else out there with all the testing they've done...and they've done it all and probed everything.
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PostSubject: Re: Hi, I'm Dot and it's been a whirlwind of several years.    Fri Feb 06, 2015 6:59 pm

WOW..first I'd say deep breaths!!! I'm not sure how they diagnosed anything with all the different doctors involved,  and I hope you have a primary contact keeping track of it all. That's totally overwhelming in itself!

I'm not sure there's anything you could have done to prevent it because they still don't know what causes it. Weight affects some, but not others. Some even gained weight after being diagnosed. There really isn't a lot of information available on IIH and there was even less several years ago. Not to mention the lack of training and knowledge of the "specialists". It can be very frustrating and isolating, so I completely understand your moments of insanity!

Unfortunately, it's not unusual for you to have side effects from the Diamox. Some members have found symptoms improve the longer it's taken, but others can't tolerate it. It seems like IIH and it's treatments affect everyone differently, so it's all trial and error. I think it's more about treating the individual symptoms and finding what works best for you.

I work for an aging network and know they have been doing MRI's with some pacemaker patients here (not just the newer models made for such things). It seems to depend on the condition of the patient, the MRI needed, and the pacemaker involved. They generally have someone there to monitor you and the pacemaker throughout procedure, but I would definitely talk with cardiologist at great length before enduring it. IIH is usually confirmed by increased opening pressure from a spinal tap, so I'm not sure why they haven't already given you the diagnosis. It can be primary or secondary, so maybe with other symptoms they're thinking there's another cause? I would start keeping a symptom log for your upcoming appointment. Maybe that would help them make a determination. You can find an example in our Useful Guides and Printouts section.

Look through the site and let us know if you have any further questions or concerns.

Take care,
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PostSubject: Re: Hi, I'm Dot and it's been a whirlwind of several years.    Sun Mar 01, 2015 7:12 am

I'm so sorry for what you are going through.
just to be clear, with a pressure of 270 you definitely have IIH so don't let anyone tell you that you don't.  and they need to not be lax about treating it because you only have the one eye.  sounds like meds are awful for you; they were for me also.  maybe ONSF is something they should consider.  it won't necessarily treat the headaches, but you have to take care for your vision.

my dad has a pacemaker for complete heart block also and he cannot have an MRI either.
you can have a CT, and have them do a CT angiogram of your brain and neck at the same time to try to identify any vascular anomalies that could be involved.
obviously weight loss might help, although it doesn't always, but you must try. 
make sure they check for any underlying conditions.  my father has sleep apnea and I think it played a role in his heart block.  I have sleep apnea and it definitely played a role in my IIH.
my story:

also you might advocate for yourself with the thyroid thing and get hold of  your lab results.  Mary Shomon had a good thyroid site I used to read years ago.  there is some controversy and the labs and docs still don't seem to understand, but many say that the TSH should be below 3.0.  I was told that with thyroid disease that you must keep your TSH as close to 1.0 as possible.  in retrospect I went into IIH the first time when I had hyperthyroidism, and went into remission when I had a thyroidectomy.  I think my goiter was pressing on my jugular veins making my ICP go up.  so if your thyroid is swollen that is something to ask your docs about.  although I doubt they would make the connection to IIH.  I don't think docs think about the physiology very hard.
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PostSubject: Re: Hi, I'm Dot and it's been a whirlwind of several years.    Tue Apr 12, 2016 4:57 am

Found out a few things since my original post.

My Pacemaker was never set right (Begged for a second opinion), yep, they said it was set just out of the box but never tuned to me.  I am thankful to have had some energy back for this past year.

My Hypothyroid remains the same, however, I have decided to join Weight Watchers since 3-5 miles a day and a lean protein/fruit/veggie diet doesn't make a difference.

Help My IIH seems to have some okay "I can tolerate it" days and "what the hell is this--am I dying" days.  The doc decided to keep me off the drugs for this past year.  I go in beginning of May and will request a new spinal pressure test.  My nervous system face, back, hands and legs seem to become more and more affected by movement.  My head, well, we all know how that feels, right.  Nervous system...anyone here feel extreme tingling/stinging and then physical coldness up and down your spine, your face and sometimes hands/feet?  A few times bending over, pressure that seems to want to knock your legs right out from underneath you?

Trying to get a handle on this and explain some of the same symptoms from the past that are still evident as well as ones being more affected. 

Your thoughts are truly appreciated.

And, thank you medmisfit and Sophiasmom for sharing above.  I meant to post a long long time ago, but, life got away from me.  Huge Hugs!
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PostSubject: Re: Hi, I'm Dot and it's been a whirlwind of several years.    Tue Apr 12, 2016 5:17 pm

No problem, life happens for sure!

I hope they've been monitoring your vision without the meds?! I would definitely follow up with whoever monitors your vision on a regular basis, if nothing else. Maintaining vision is the ultimate goal of IIH treatment, so it's very important.

I'm glad some of your concerns were validated and they finally addressed the issue with your Pacemaker. That had to have helped with your energy.

Strain/position changes, sinus/allergies, activity level, and weather all affect your ICP (intracranial pressure), so it can fluctuate. I've also found that my fluid intake and food I'm eating makes a difference..for example, I don't tolerate processed food very well at all. 

I would definitely take a list of symptoms with you to the appointment. Note whether you notice symptoms at certain times of day, following an activity, etc. This should help your physician determine the cause. I know the tingling in my face and hands gets worse with increased pressure. I also have ear pain and some visual changes when it's up. IIH affects everyone a little differently, so you just have to monitor and log the changes to find your triggers and symptoms.

Good luck with your appointment, and please let us know how it goes!
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