Hi MM3,

To be or not to be. who was the dude that instilled that famous phase for all to enjoy, ah yes my CRS (cant remember sh*t) wont get the best of me today for it was in fact Sir William himself. So you ask, where is this guy going? It is like this for me. IIH is a blessing and a curse. The blessing is that we are invisible. Free to roam the world and infiltrate the common workplace as though absolutely frickin nothing is wrong. The cusre of couse is that it may 10-20 times the effort as those common soles we walk amongst. And if indeed we seek support, to let them know of our pain, we are not received well as we dont look like anything could possibly be wrong.

So to answer your questions. No I am not working but actively looking when I can drag my sorry ass out of bed at a respectable hour. Yes my wife can see a bad headache day in my facial expression. Yes I struggle with memory and cognitive issues that then cause some anxiety as I never had these troubles before. For me my number #1 priority is getting my headaches back to a manageable level that I can go back to work. I also want a solution that takes pressure off the brain so that I can say good bye to CRS as well.

Hope this helps. Hey what ever happened to MM1 and MM2 and do we have a MM4 in the future????

TJ

Hi MM3,
I am not working right now either, but when I was, I often had to use the FMLA in order to take time off when I needed it for spinals, killer headaches, or doctors appointments.
As for CRS, I am a sufferer to, and coworkers made fun of my cubicle covered in rainbow clored sticky notes. If only I could have remembered to tread them....
Lucy

I love your sense of humor! I guess I never looked at this as if we were Vampires invisibly walking amongst the "living" in one of the Twilight books! You are so right about the way we are received though. It is difficult to describe to the "normal ones" when we appear seemingly normal. Thanks for the insight. It's nice to know I'm not alone.

MM3 (sounds like mission impossible or a james bond flic)

No you are not alone, you can check out but you can never leave as you are now in an orphan world so to speak as we are a small population (small disease-orphan disease) in the grand scheme of things with respect to the medical research world. The good news is that this support group has grown to over 70 members from the 6-8 when I joined in Dec 08. For many this is a stop over to grab what info they can then move on in search for more while others come and go. And then there are a few die hard, hang in there and help where you can folks like the pirate TJRasta. More good news is we are not picky. We take everyone who wants to be here, we share experiences and wish well to those who move on. Hopefully at the end of the day we all feel a little better for it.

Glad you enjoy the humor. It is the glue that is keeping me sane right now.

I don't know if I can add to the humor of these guys, but I definitely got a kick out of reading it!

But no, I'm not currently working and I can say that there's no way I can hold down a job right now, although I've thought about what a part time job would be like.

I'm so newly diagnosed that I haven't pinpointed which of my daily discomforts can be contributed to the PTC but I do know that most of them are too frequent for me to be able to make it to work everyday, on time.

It's depressing, to me, as I'm in an incredibly crappy spot financially. Only in the last few months have I gotten so sick.

Wow I love this topic! I often wonder why it is my mind goes crazy while I am at work. I do work, I am a full time Middle School Teacher. It is so hard, I struggle everyday. I have noticed that I do not want to be there, I can not concentrate, I can not make mysellf do the tasks that a teacher needs to do on a daily basis. I pull it off still but as the days go by it gets so hard. My ability to remember things gone, kids names I break down becasue I still do not know there names, I can not spell words anymore simple ones. But i tell myself I have no other choice still I have to be working. I see myself taking more and more days off, crying more and more. I blame it on the school but maybe its the PTC making it so hard? I just know working daily is one of the hardest tasks in my life, then throw in the pain and remembering the meds and the appointments its a lot!

Hi Woody,

Well said. I applaud you for hanging in there. This is not easy and unless you are one of us it makes absolutely no frickin sense. If you can, I would encourage you to duke it out. This is a tough job market and not having a job doesnt really make it any easier to deal with.

I was part of a massive layoff at the end of last year. When I was working although it was frustrating I found the distraction of actually having to work very comforting as it took my mind off the pain. I was able to keep it from others (i think) and continue contributing at a good level. Now my condition has grown worse with no apparent reason. I imagine the stress of not working is aggravating my headache to some degree but who knows how much.

So my focus now is to get back to a level that I feel is a good quality of life and that means being employed and contributing to something I enjoy. If I could make a living working at helping IIH patients in some way I would do it in a heartbeat. So instead I try to help here when I can.

Hang in there!

TJ

I am not currently working actually I am on the disability path because of complications from the PTC, when I did work, I missed a lot of time and was sent home because of being sick often.

the americans with disabilities act really helps people with PTC when the doc works with you, unfortunately most patients know more about this than their docs do. I have only recently got a doc who actually knows about PTC, and I have had 3 surgeries and been on 5 different meds (not counting the pain meds that dont help)

Thank you TJ, Woody, NR, TT and Charlotte:

I am sorry that you each suffer the same agonizing symptoms as myself. Furthermore, I feel for your financial woes.

I encourage each of you to do what you can as I side with TJ that staying busy with work can provide a nice distraction from IIH. I was most recently working as an Administrative Assistant for the Federal Government, but, lost my job in October due to frequent time off due to the headaches. While I was employed it was very difficult, but it felt good to contribute.

Of course, now I am on the Diamox and dealing with the side effects. Right now I can't imagine climbing the stairs in my house let alone working outside the home. (BTW...TJ...I cut back on that afternoon dose of Diamox yesterday. This evening the pressure has returned and I feel a headache is not far off. What to do?)

All I know is that I am happy to be in this group to offer support, encouragement and maybe even steal a few bits of advice myself. Just keep it all in perspective...Things could always be a lot worse!!!

Hi Monkeymom3,
Oh, my short term memory was horrible while I was on diamox. I couldn't even remember taking tylenol a couple of minutes after I took it. Once I was off of Diamox my memory returned to it's normal self (which isn't that great anyway, lol). The second time I tried diamox, I think I was prescibed 2000 mg and I slept for 24 hours and had to take it at a lower dose. But I have to say, the first time I took it, my PTC resolved. When it came back about 3 years later, for some reason I couldn't tolerat it (and I am allergic to sulfa medications). I haven't been working since August, due to my symptoms and surgeries. I hope you find a dose that works for you! Jazzy

Hi Jazzy,

Question. Did you go off Diamox right after you got the shunt? I ask because I am wondering if it was the Diamox or the elimination of the pressure that gave you your memory back??? There is a current study being developed to evaluate ICP level vs memory and cog skills degredation. I don't think it looks at Diamox dosage.

TJ

Thanks Tj and everyone really for all your input. It sounds weird but the more I read the more normal I feel...I am going to tuff it out working as best I can, I do have the blessing of short breaks as a teacher. So TJ you said you have grown worse for no reason, had you had good results before and then grown worse?

Woody,

Don't really have a good anwer for that Q. I don't know if my body is just getting use to the diamox (drug literature says this but neuro says no way)or if inside I am just getting worse but either way it has been a struggle. My Neuro will not go higher on Diamox (tried everything else)nor more frequent on LPs yet everyone to date has been higher. My headaches have morphed to 10X's worse at night in horz position. My Neuro doesn't know what the hell to do with me so I did an end run around him and saw a NS today. Please read my post that is something about "pre shunt hospital stay" for an update.

Over all it was a good meeting. Good day but bad HA day.

TJ

I had the fortunate (?) experience of being promoted just as my headaches began to surface (My other symptome were wacky and easily dismissed). I thought my headaches were because of the stress of being a supervisor! Now they have gotten progressively worse, dispite the meds. I can't focus or find the word I'm trying to say next. I have to read... A LOT.. but can't keep up. The person I hired to replace me thought I didn't like her... she misread pain and nausea for contempt. I'm terrified I won't be able to figure this out because I carry the health insurance. I straddle my day between symptoms and side-effects. People walk up and think I'm feeling better, but its usually I'm only in pain. I love my job... I just wish I could do it. Good news, while my boss doesn't really get it, she is trying to understand, and my co-workers are supportive.

Working outside the home? No.

Right now my best money-maker is booking travel from home and splitting the commission with a brick-and-mortar travel agency. Let's just say I haven't gotten a commission check for over 4 months.

I quit my call-center travel-agency job in July of 2003 due to the headaches. I was working 2-ten hour days which wiped me out and I took 2 days to recover from those.

Now at least I can book travel when I feel well. No one has to know if that means it's 11pm or 11am. I have no boss, no quotas, no attendance issues. It is pretty good except I also have no customers right now.