Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
As many of you know I stopped taking my Diamox and all other medications almost one month ago. Since that time, actually since I have received my diagnosis, my husband has treated me like a fragile flower. This is a blessing in as much as I have a wonderful husband who has stepped up when I needed it. When I stopped the medications I was frightened that I would instantly be back in the hospital...... but, I wasn't.
I have always been on the verge of a headache. There are days that I have the "whooshing" in my ears. There have been several days that I have had to take a narcotic when I felt that the pain could become severe if left untreated. But....the pain has not become severe. Nothing that I haven't been able to handle.
Barometric pressure changes effect me....Heat/hot temperatures effect me....stress effects me....exercise effects me and my menstrual cycle effects me. Although some of these things are controllable I can't control them all which is why a couple of times recently I've had to take narcotics.
But, you must know that with the help of my husband, I have been living in a bubble. Not by choice, but, I have been. I have mostly just been laying around, typing on this computer, watching a movie or reading a book. Occasionally, I'll cook something or make a bed, or run a quick errand. But, mostly I'm just laying around. My point is that I haven't really tempted the headache. If I were living my life "normally" I believe that the PTC attacks would be more severe. Or...am I wrong?
Was the stupid little nurse practitioner right? Could it be that I don't really have PTC? Could it be that I have a mild case of PTC? Is there such a thing as "mild" PTC? OR.....
Is all this happening because really am the girl in the bubble??? Any insight would be appreciated.
MM3
Needing your help this time
I have always been on the verge of a headache. There are days that I have the "whooshing" in my ears. There have been several days that I have had to take a narcotic when I felt that the pain could become severe if left untreated. But....the pain has not become severe. Nothing that I haven't been able to handle.
Barometric pressure changes effect me....Heat/hot temperatures effect me....stress effects me....exercise effects me and my menstrual cycle effects me. Although some of these things are controllable I can't control them all which is why a couple of times recently I've had to take narcotics.
But, you must know that with the help of my husband, I have been living in a bubble. Not by choice, but, I have been. I have mostly just been laying around, typing on this computer, watching a movie or reading a book. Occasionally, I'll cook something or make a bed, or run a quick errand. But, mostly I'm just laying around. My point is that I haven't really tempted the headache. If I were living my life "normally" I believe that the PTC attacks would be more severe. Or...am I wrong?
Was the stupid little nurse practitioner right? Could it be that I don't really have PTC? Could it be that I have a mild case of PTC? Is there such a thing as "mild" PTC? OR.....
Is all this happening because really am the girl in the bubble??? Any insight would be appreciated.
MM3
Needing your help this time
I struggle so much on my good days. What should I do? What CAN I do? How much is too much? If I do too much, will I relapse? If I don't do anything, will I be wasting my chance and be sick tomorrow anyway?
I do not pretend to be an expert, I'm feeling this out as I go along. But if it helps you at all, this is what I try to do:
I try to live each day one at a time. I do my best to be aware of potential consequences but not live in fear of them. That's a balancing act that I haven't mastered yet but I haven't given up either. I don't want to live in fear. Life is too short.
Each morning when I wake, based on how I'm feeling, I decide what I'd like to accomplish that day. Usually I'm pretty ambitious with this, because that's my natural tendency (oh I have energy for the first time in two weeks - great! I will do 4 loads of laundry and go to three stores) but then reality sets in and I usually cut that in half. And I leave myself open to flexibility. Maybe after one load of laundry I realize that I'm done in. Oh well, at least I did that one load. I accomplished something.
Even on my bad days, I set goals. - Find a way to distract myself from the pain for one hour somehow. Find a way to fall asleep. Etc.
So, I guess my advice to you would be to try something. Figure out what you think you can do, and give it a shot. If it works out, great! Set a new goal for the same level or slightly higher next time. If not, cut back on your goals a little (or a lot) the next time.
The only way to find out how fragile you really are is to explore your boundaries, gently.
Good luck!
I guess I'm frustrated because although I was only diagnosed a couple of months ago, I have been struggling with the disease for a couple of years. I feel like I'm setting a bad example for my kids. I realize they know I'm sick, but, I don't want to appear lazy. And while, I know my husband and kids understand (as best as they can), I don't want them to think that I'm not trying.
Next month my daughters are having a huge recital and my son is graduating from high school. Family is coming up from Ohio. While we keep up on the normal house cleaning, etc. Our home was built 3 years ago and is fairly new. As such, I still have some painting to do, landscaping to do, organizing, etc. While my family knows that I've been sick I still feel like a failure if it's not all in order by the time they arrive.
I want to enjoy the nice weather, but the sun adds to my headache. So, right now, I am emotionally distraught. There is so much to do, so little time, and I am still in limbo with this disease. Like you, I try to do what I can and have learned (somewhat) to set boundaries. But, at times like these when the big things can't be put off any longer, I just want to be "normal".
Thanks for the support. It's so nice to know I'm not alone.
So to answer your question...I guess, yes, I have a headache everyday. Sometimes it is waiting in the wings and sometimes its right out there. I am also having lower back pain. I've noticed that since my LP's my lower back is stiff. Today I am also seeing spots in my vision.
So frustrating....Aaaauuugggghhhh!
Hang in there and don't give up.
Liz
I don't think the stupid little nurse practitioner was right. If you are avoiding everything that you know of that will trigger (or make worse) a HA, and taking it easy when one is waiting in the wings (funny how that's all the time, isn't it? it sucks). You're treating your illness, sort-of. It's like that old joke... patient says to doc, "my arm hurts when i do this," doc says, "stop doing that." Well, you've kinda stopped doing that.
And it comes down to quality of life issues, yet again. Is this really the life-long solution to your chronic illness?
Please keep in mind that I do not want to see the monkey of old that would swing from the rafters cleaning every thing in sight out of some moral code that says that the tidier things are, the better.
I have a mantra a work that may help. Do what I can... let go of the rest. (sometimes letting go involves delegation and asking for help).
Then take a hard look at what you want out of life and take that to you neuro appt on the 8th. This is where I was living in daily agony, this is where I am now to keep from living in pain, this is where we need for me to be. So, doc, what can we do?
It's hard to be us. Good thing we have each other!
Bax
BTW....My 12 year old took home a Gold Medal for competition. She was the only dancer to sing and dance for her performance. I have downloaded some pictures for you to check out. Enjoy! I am very proud of her!!!
I also feel like I'm living in a bubble since I can't do very much...I try to do what I can and then I have to lay flat for fours...it is driving me crazy, and I have read so many books I'm actually sick of reading (which is weird for me since I love to read). the constant adjustments of meds gets to me, I think becuase I feel like a failure if I have to take them (old stuff obviously). I try and say to myself..if I had a friend who was sick how would I talk to her (nothing like the pressure I put on myself)..I would be so kind and gentle to her.
I have been working alot on being in the moment, letting go and trying to make some sense of this spiritually (sp?)..I don't think I can but hopefully I am learning something about myself and others. I hope you are feeling better, Jazzy
Still this disease is hard to deal with..I do know that when I was first dx. my papilla edema was sky high and the second time it was much lower, so maybe you can have a little PTC.