Hi everyone, new to the forum and recently diagnosed with this horrible disease.  Try to make this short: 
Had migraines since 17 years old and hyperthyroid no treatment needed.  Started having some pain behind my eyes two years ago, thought it was due to my hyperthyroid.  Opthalmologist checked eyes and only noticed tortuous veins in my eyes, said we should monitor it for next year.  Vision okay but had trouble driving at night due to the light glare.  2016 summer I moved to Texas fiance got a job, left NYC.  Moved to Houston in July and in August was having double vision, seeing flashing lights, waking up with ringing in my ear, dizzy and nauseous.  Doctor was scared because of the double vision sent me to hospital, did MRI, Ct Scan, hospitalized for days you know the drill.  No one figured out, so I went back to my normal life figured it was due to bad migraine heat etc.  March start getting pulsatile tinnitus, saw an opthalmologist who found the papilledema and was pretty sure it was IIH.  Did spinal tap in May, with pressure of 23.  Gave me meds but I was heading back to NYC to visit and wanted to see if the climate would have an effect and it did.  In NYC I had little to no symptoms.  No tinnitus, no double vision no dizziness, no fullness in my head!  I was shocked but had suspected that the intense heat and humidity was a factor.  Stayed in NYC for 3 weeks and felt great.  Came back to Houston and within 2 days my symptoms came flooded back...first slight dizziness, then one episode of double vision, then I woke up with tinnitus and several double vision episodes!!  
I dont want to move back and uproot my family but it seems clear that climate plays a role.  Anyone else have this experience?  Is this possible?? Please help!

hi.  my IIH started when I had hyperthyroidism also.  I got better within 24 hours of my total thyroidectomy.  I think it was my goiter pressing on my jugular veins.  I just thought I'd mention that in case you have a huge thyroid, if the thyroid thing is still lurking.

so, when it is humid, the air pressure is lower.  lots of people notice that when it is storming, our symptoms get worse.  a lower air pressure allows ICP to go up.  but technically your body should adjust eventually to that and it's just the change that initiates the symptom onset.  it's the same going up to altitude in the mountains.  less so in a plane when the cabin is pressurized.

it definitely sounds like TX is a bad place for you.  it might be worth trying to explore what exactly it is about TX.  maybe it's not the climate per se.  I am chemically sensitive and exposure to chemicals will increase my ICP.  TX being humid, many of the buildings may be infested with mold.  mold toxin might also trigger your symptoms.  try to stay in a different building and see if it's better.  the docs who treat mold toxicity have zero clue that the symptoms of "mold toxicity" are the same as IIH.

I have noticed that changes in altitude and weather affect my symptoms. I know some members live in specific areas because they feel that they function better, but others travel frequently and just note changes with take off/landing when they fly.


It could be that your body is used to NY, so that's where you feel the best. But, I would have thought you would have adjusted to TX after a year.

There could also be environmental changes like Deb suggested, I would even look at food, products, etc and see if any of those changes may be contributing to your symptoms.


The Intracranial Hypertension Research Foundation may have more information, so I'd suggest checking their site at [You must be registered and logged in to see this link.] and contact them via email or phone.

Thank you both for your feedback. I truly do not want to move back to NY. It is very hectic and triggers my hyperthyroidism but losing my eyesight is not something I can bargain with. I've always suspected my thyroid as being the culprit of most of my maladies bur right now she is under control. I've had the goiter discovered since 13 but it only started acting up after childbirth... hormones. I always keep an eye in it. As for environmental I thought of that too. We did have mold on the AC vents in our apt so I got that cleaned by professionals and thought I took care of the problem. Nope. I get my symptoms outside of the home and worse of all get my double vision episodes while driving. I thought after a year I would be better but noticed my symptoms subside during Oct-March when it's cooler here. I don't want to uproit my family again but not sure what else to do. I've also lost about 20lbs and went on an autoimmune paleo diet so I am trying in all regards except the meds. I am very sensitive to meds and they usually do bot agree with me. They're my last resort :(

if you are reacting to mold, it is not something that will get better when you leave the house, as long as you are sleeping in a mold infested house.  you could test the theory by staying in a new hotel for a week or so, avoiding your home entirely.  (the mold can be inside the ducts where you can't see it.  you can get the ducts cleaned although I know my mother had all of hers removed and replaced.)  the reaction makes your brain swell and it takes time for that to come down once you are removed from the toxin.

the other possible issue if you got worse with childbirth, is obstructive sleep apnea.  it worsens with pregnancy and with age.  it worsens if you are nasally congested.  if something in your home is affecting your sinuses, like mold, this could be part of a reaction, and it could be different in NYC.  apnea increases ICP.  I went into remission from IIH after jaw surgery for my OSA which was so mild that several sleep studies couldn't find it.  it can be a sneaky problem.  I didn't even snore usually.

I was ready to stay at a friend's house for awhike but I just got a job offer in NY and have 24hrs to respond! I need to make my decision now since school is about to start and I would need to prepare my child for school. She got accepted to top schools in both states. She has 'right of return ' for NY but after this year she'll lose her spot, so it's now or 3 years in TX. I'm in a really tough spot. How could I check for mold in the ducts? I wish it would be that and solve my dilemma :(

mold needs to be cultured and it takes weeks to grow.  you need more than 24 hours to figure this out, one way or another.  I would stay in a place that you can be pretty sure is clear of mold, and see how you feel.  even if you cultured mold you still don't know if that's it.  you really don't know what it is except that it is environmentally related.  with the job offer and the school issue, you may need to just follow your intuition in order to make a decision.  something about TX is making you sick.  I lived in Alabama for 3 years and it was a swamp, I got sick while I was there.  I would never go back to the south.

That's exciting and unfortunate! I wouldn't let the symptoms be the only factor in making your decision, but only you know how bad you feel. It's a tough decision with all the unknowns and limited timeframe, but you can only make a decision based on what you know.

That's probably not helpful, but, if the NY job and move isn't right, then you'd have time to figure out the issue in TX. If your symptoms are so bad that you can't function in TX, then you may need to go back to NY because the opportunities may not be there by the time you figure out what's causing your symptoms in TX. I know I'm "Captain Obvious", but ultimately the decision is yours and unfortunately we can't advise you either way.

Let us know if you need to further process it..good luck!!!

I really don't think I can stand 3 more years in TX with my symptoms like this.  I have been back for a week and every day is misery.  I think I just forgot what it felt to be 'normal' and not in pain...I think we get used to things being like this.  When I went to NY I felt normal again, lighter in my head and able to function...so I think I will not listen to my heart or my mind but to my body and go back! I wish I had enough time to try and heal here in TX because I actually got used to it here (cheaper, less stressful) but there is no time :( 

I will keep in touch and update everyone else who may be going through a similar dilemma (hope not).  
Thanks again!

congratulations on your decision.  I don't like NYC but I think you made the right decision.  I think I'd rather be in suburban NY than in TX.  keep us updated on how you are doing.

I'm glad you were able to make a decision and hope it works out. I can't imagine anyone would fault you for wanting to reduce your pain and suffering. Definitely keep us posted, and good luck!!!