Sorry I can't help other than to offer you my sympathies. Having this illness can be so hard at times, and many people don't realize how much we suffer because it's not an illness that presents a lot of its symptoms physically. But don't give up and make sure to take care of yourself!

are you keeping a diary?
I ended up deciding on my jaw surgery, which put me into remission, after keeping a diary of my symptoms for years. I kept track of what I was doing for my sleep apnea, how I slept, what I ate, what meds I took, what stressful thing went on, my cycles, etc etc. and after a few years I was able to narrow it down to whether I was successfully treating my sleep apnea. I graded each day based on how I felt, and did a statistical calculation based on the data, to reach an objective conclusion about what was going on.

if you do the same, you may start to see a pattern to it, to figure out what your triggers are. I also had times that it seemed like I was fine until I ate something. but I always woke up bad. if you are chemically sensitive like many others here, you may be masked and not realize it. start cutting out all scented products and chemicals in your home, and you may start smelling things you didn't before, enough to note that exposures to these chemicals may be causing some of your problems.
take the qeesi test online, you can find it with a google search.

I am in the same camp as Sophiasmom on the chemical sensitivity issues. So I am curious about any new cleaning agents you may have started using or new soap, shampoos, etc. I have to use the all natural/organic stuff, and even amongst those, I can be picky. The mail flyers, which are abundant this time of year, that have strong inks/dyes can be bothersome as can perfume inserts. Have you been to the mall or other stores that you don't usually frequent? Sometimes the odors can be overwhelming. Also, there are ladies' rooms in some stores, libraries, etc., that use very strong air fresheners that used to tank me out, so I must now try to avoid those certain ones. Even the sound of some of the crazy loud hand dryers could intensify or set off a bad headache. Though I have my base headache that never goes away, the intensity varies.

Any new changes to your diet or things you may have eaten for several days that you typically don't eat as much of? More salt or new oils?

Regarding the weather, I have the iPhone 6+ that comes with the barometer app that has been especially interesting to have and "fun" to keep up with as well. I have noticed that sometimes there is very little variation in the barometric readings even though the weather changes would seem to indicate otherwise. Thus, sometimes, when the rain comes through there is little change and other times considerable change that may not be noticeable on the barometer until the second day of rain. The more sudden changes in weather typically indicate more variation in the barometer. Also, it is worse when there is lightning in the area.

I recently purchased a fitness tracker as an incentive to stay more active over the winter as well as follow my sleep. Though not at all like an official sleep study, it does seem to "accurately" track my deep sleep (stage 3 and 4), and I have noticed, obviously, that can make a difference in how I feel the next day. I can tell upon waking if my device will indicate decent spent in deep sleep...

I use homeopathic eye drops for irritated eyes (Simialsan) that gives some comfort to my achy eye(s). I do not have papilledema, but my left eye has felt achy for about 15 years, since having Shingles. When my head hurts worse, so does that eye and often the other as well.

Hope you are feeling better.

I leave the newspaper printed coupon flyers in my mailbox until garbage day, then throw them out directly into my neighbors trash can. they do not come in my car, they smell too bad. I do not go to the mall. I wear a mask in public restrooms, and ironically the one in whole foods I can only enter with a gas mask and they insist that they use all natural stuff. whatever.

check this out on air fresheners, candles:
http://www.womansday.com/health-fitness/wellness/news/a51813/new-study-finds-scented-candles-and-air-fresheners-pose-massive-health-risks/

and yeah, the hand dryers are horrific. I have to put in ear plugs just in case someone uses one while I'm in there.

Hey antique rose, which one/brand/model tracker are you using, that sounds interesting...

Mary

Hi Mary,

I have the Withings Activite Pop. I bought it on a Black Friday sale for $99.00. It does not register heart rate and calories like a Fitbit. My husband has a Fitbit, and his does note restless times during sleep; mine does not. My Pop may register lying still and playing possum as light sleep, but the deep sleep seems to be true enough. It has a battery that can last up to eight months and easily syncs with my iPhone to provide sleep and activity data. I considered the Basis Peak activity tracker, which is supposed to detect actually REM sleep, etc. Since the reviews were less than stellar (Amazon), I decided against it. I still wonder though... It would be fun to have both for comparison.

http://www.withings.com/us/en/
http://www.mybasis.com

Mary, there is another fitness sleep tracker that is interesting, the Jawbone UP3:

https://jawbone.com/fitness-tracker/up3

This is actually the one that I should have gotten since it also tracks REM sleep and the reviews are rather good too. Yet the Withings has a simple dial on the face to encourage activity all day, no buttons to punch, and I like that aspect.

I'm checking into these. Thank you so very much!!!

Pip, Do you track the barometric pressure in your area? That is biggest trigger that I found so far. I am new so this is my first post. I have been looking at the site for some time and I think you are in Dallas or at least your neuro-op is. I'm in Spring just north of Houston. I was really sick for about a week when the barometric pressure dropped below 760 mm. It went higher for a few days for a few days and I had a pretty good weekend, although I just switched to Diamox as well. Unfortunately, I just got a fronto-central headache, stiffening in my neck, and warm swollen feeling in my hands. I looked at the barometric pressure in my area and sure enough the pressure has started dropping. Here's the link to the site I use: http://www.weatherforyou.com/reports/index.php?config=&forecast=zandh&pands=77386&Submit=Get+Weather

Oh I just saw Antique Rose's post. I guess I should read those first before responding. That app is an incentive for me to buy an IPhone 6. LOL. I am going to learn a lot from Ya'll.

Im glaf this was brought up, unfortunately many members here are being ignored, and things progressively worsen. If this gives you an idea of sleep disordered issues,keep a diary, and if ypu dp get a sleep study, DONT TAKE YOUR MEDS. This has been an issue for me now on 3 sleep studies. I have some serious issues going on and I'm being ignored because my Keppra is somewhat keeping it in check, without it, hello grand mals, all thanks to my moron ST LOUIS drs.
Moral of my story, don't believe what your being told about PTC, I'm the long termer, they refuse to admit what high pressures do to us long term. Uggg

Glaf???? Lol, glad

Thank you Mary. You are so right. I am frustrated that I have gotten so little info from my drs. Upon diagnosis, I was given a 2 page explanation of PTC and that was it. On my last visit to neuro-opth, I was complaining about eye pain like Pip. They told me it was probably my thyroid and I should get my thyroid levels checked. I have gotten most info from internet searches, finding support groups, IHRF website, etc on my own. I have started printing off articles, other sufferers similar complaints (like my crazy bouts of anxiety), etc and taking them into my drs. Trying to educate them may help others.

Thank you Iluvemy3dogs! I'm keeping track of the barometric pressure now in Dallas starting today. Days leading up to the rain storms I was horrid but once it started I was fine. weird! I'm tracking it now!! Thank you