Tuesday, November 20, 2007

Well This is Strange - Swollen Eyelids

Just when you think you are out of the woods you stumble upon a new forest. I awoke this morning looking like this and the swelling around my eyelids lasted all day. It has gone done a lot now but my upper eyelids are still slightly swollen. They were so swollen that I could feel the swelling.
Okay, what happened? Nobody knows. I woke up at 5:46 am needing to use the restroom (I went to bed at 2 am). An hour later I awoke to headache (bad dream again) and took two Excedrin. At 10:49 am I was surprised the wake up so late. I could not see too well out of my eyes but that is kind of normal as the gel drops I put in them at bedtime paste them shut.
I wandered into the bathroom to splash warm water on my eyes to unglue them and was surprised to look in the mirror to see the face in the picture above staring at me.
Ahh! What now? I brought the camera into Harley's office to have him snap these photos of me. Then I had a weakness episode where my legs quivered and body started to shake. My vision blacked out again like the head rushes I have been having. If Harley had not held onto me I might have fallen to the floor like I did in the episode in 2004.
Scary crap. I had to lie down right away and of course fear envaded my mind. I started to cry and get upset but then I had to remind myself that the strain of those activities would make the situation worse. So I chanted to myself the mantra from a motivational book I am currently reading, "Every day and in every way, I am getting better and better."
It is easy for fear to creep in and try to paralyze my mind. The last time the fainting/blacking out attack happened to me was when the tumor that was removed was swelling after the radiosurgery treatment in 2004. Thus I have fears of developing high intercranial pressure which leads to papilledema (swelling of my optic nerves). I have been on medicine for papilledema for over 2 years. Now I am off of it (3 weeks now) to see if removal of the tumor relieved the papilledema. Left untreated, papilledema will eventually result in blindness. So you can understand why I would get a little freaked out.
The 0ther time I had these weakness/fainting episodes is right before I was diagnosed with cancer. I had a blood cancer so I was very anemic which was causing the fatigue and fainting/weakness spells.
Boy, what a wonderful selection of things on my mind, eh? It truly is a struggle at times like these to keep thoughts positive and optimistic.
I emailed the doctors and one responded not knowing what is going on. He said the swelling could be related to an allergy or medicine I am taking.
a) I am no longer taking medication and have not been for 3 weeks. I did start taking an iron supplement (slow FE) 2 days ago and this morning I took Excedrin. However, both of those I have taken in the past and do not recall this happening.
b) I did not eat anything different or use any different kind of soap or bodyspray.
So who knows? Not knowing or having an answer is unsettling.
So what do I do? I start ruling things out.
At my first follow-up appointment my low blood counts alarmed me but I had just had a surgery so maybe that is kind of normal. I had a repeat done as in the back of my mind blood counts out of whack could mean something bigger is happening. The results of the second blood draw also showed low red blood cell count and hemoglobin (anemia) but I had some peace of mind seeing that my white blood counts were normal and not abnormally high. I don't feel like I did when I had cancer either except for lethargic and mildly weak from the anemia.
When I had the onset of papilledema I had other visual issues occur which have not been happening (light flashes and double vision). Realizing that has given me a little more sense of relief to keep me from total panic.
I did a quick search on swollen eyes and of course came up with papilledema and brain tumors (mine being one of the rare causes of this swelling). High intercranial pressure and others were also listed as causes. However, the tumor is out and swelling occurs immediately afterward and not delayed like in the case of radiosurgery (radiation).
I further searched on the same site under "swelling eyelids" which brought me to the heading "leg weakness and puffy eyes" which is what happened today. Under "weakness" I was brought to "anemia". So it appears that the head rush spells are related to my iron deficiency.
I still don't know why my eyes puffed up. They are a little sore. Maybe I have developed a new allergy to something.


KC said...

Thats very odd about ur eyelids....
are they still the same?

Kim said...

It sort of bothers me that YOU have to do all this research yourself! Isn't that the doctor's job??? I'm glad you found out it was anemia. Keep taking that iron! (((HUGS)))

I'm working this weekend and can't make it to the ALDA meeting (sigh!!!)

Anonymous said...

I just started reading your blog a couple weeks ago. I am a 33 year old woman with NF2 and this same thing happened to me last April. Like you, I had no change in diet, bath products etc. I went to the ER and was also tested for allergies. I found out I was allergic to bees and pollen. Well, I certainly wasn't stung and I don't believe pollen could have caused such a severe reaction. I looked like Mike Tyson socked me in the face. It was very strange and I still feel unsettled about it.