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...
HELLO EVERYONE, SO I HAVE BEEN ON DIAMOX A LITTLE OVER A MONTH NOW AND I REALLY DONT LIKE IT!! I HAVE ONLY BEEN ON 25OMG 2X A DAY SO FAR AND I KNOW WHEN I GO FOR MY 2ND APPOINMENT THEY WILL WANT TO INCREASE IT AND I FEEL LIKE ITS DOING MORE HARM THEM GOOD FOR ME. SO I GUESS MY FIRST QUESTION IS, IF I ASK THEM TO TRY SOMETHING ELSE WOULD THEY LISTEN TO ME?
SO SINCE I HAVE JOINED THIS GROUP I HAVE REALIZED MY IIH IS NOT AS SEVERE AS IT SEEMS EVERYONE ELSES IS. I HAVE ONLY HAD ONE VERY SEVERE HEADACHE AND THAT WAS WHILE I WAS ON DIAMOX AND I HAD A FEW (3)GLASSES OF WINE, I WOKE UP IN THE MIDDLE OF THE NIGHT IN EXTREME PAIN FEELING AS IS I WAS GOING TO DIE!!! SO I AM WONDERING IF MAYBE EVEN WITH MY PAPS AND RAISED ICF AND PULSITILE TINNITUS, COULD I MAYBE HAVE BEEN MISDIAGNOSED?
MY 2ND APPOINTMENT IS IN JANUARY AND I AM WONDERING WHAT TO EXPECT. MY FIRST APPOINTMENT WAS ONLY WITH A NURSE PRAC. SO IM NOT SURE WHAT TO EXPECT. WILL THEY DRAWL BLOOD, DO AN MRI...IDK IM JUST CURIOUS I GUESS.
SO FAR I AM EXPERIENCING A FEW SIDE EFFECTS ON DIAMOX THAT I COULD LIVE WITHOUT, AND IM WONDERING IF THESE ARE FROM THE DIAMOX OR MAYBE JUST THE IIH.
I HAVE DAYS WHEN I FEEL JUST SO SICK AND DONT WANT TO DO ANYTHING.
I HAVE TIMES OF LIGHTHEADEDNESS ALMOST TO WHERE I FEEL I MIGHT PASS OUT.
I HAVE THE TINGILING IN MY HANDS AND FEET AND HAVE EVEN HAD IT IN MY LIPS.
I HAVE ALSO RECENTLY NOTICED THAT WHEN I USE MY RIGHT HAND (SHOVELING,WRITING EXT.) IT REALLY HURTS FOR A WHILE LIKE STIFFNESS.
OK I GUESS I AM DONE FOR NOW BUT ANY COMMENTS WILL HELP.
THANKS EVERYONE
SO SINCE I HAVE JOINED THIS GROUP I HAVE REALIZED MY IIH IS NOT AS SEVERE AS IT SEEMS EVERYONE ELSES IS. I HAVE ONLY HAD ONE VERY SEVERE HEADACHE AND THAT WAS WHILE I WAS ON DIAMOX AND I HAD A FEW (3)GLASSES OF WINE, I WOKE UP IN THE MIDDLE OF THE NIGHT IN EXTREME PAIN FEELING AS IS I WAS GOING TO DIE!!! SO I AM WONDERING IF MAYBE EVEN WITH MY PAPS AND RAISED ICF AND PULSITILE TINNITUS, COULD I MAYBE HAVE BEEN MISDIAGNOSED?
MY 2ND APPOINTMENT IS IN JANUARY AND I AM WONDERING WHAT TO EXPECT. MY FIRST APPOINTMENT WAS ONLY WITH A NURSE PRAC. SO IM NOT SURE WHAT TO EXPECT. WILL THEY DRAWL BLOOD, DO AN MRI...IDK IM JUST CURIOUS I GUESS.
SO FAR I AM EXPERIENCING A FEW SIDE EFFECTS ON DIAMOX THAT I COULD LIVE WITHOUT, AND IM WONDERING IF THESE ARE FROM THE DIAMOX OR MAYBE JUST THE IIH.
I HAVE DAYS WHEN I FEEL JUST SO SICK AND DONT WANT TO DO ANYTHING.
I HAVE TIMES OF LIGHTHEADEDNESS ALMOST TO WHERE I FEEL I MIGHT PASS OUT.
I HAVE THE TINGILING IN MY HANDS AND FEET AND HAVE EVEN HAD IT IN MY LIPS.
I HAVE ALSO RECENTLY NOTICED THAT WHEN I USE MY RIGHT HAND (SHOVELING,WRITING EXT.) IT REALLY HURTS FOR A WHILE LIKE STIFFNESS.
OK I GUESS I AM DONE FOR NOW BUT ANY COMMENTS WILL HELP.
THANKS EVERYONE
With the pain your having in your hand does it go numb?....like your trying to do something but it hurts and all the sudden it may just fall out of your hand?....If so I believe this is the IH....until my Diamox started working, I take 500 2x a day, I thought I had a pinched nerve somewhere because for no reason my hands/arms would hurt, I would wake up in pain in my arms and hands too, well come to find out it was the extra CSF putting pressure on my spinal cord, I have been on my Dmox for 3 months and the side effects are gone other than the yucky taste of anything carbonated....and no more pain in my hands/arms I am actually able to curl my hair without dropping the curling iron and write without dropping the pen and sleep with out pain. I was a total Diamox hater at first but I now know its working for me. Sometimes when the side effects were really getting to me a big glass of water seemed to help, this medicine takes so much out of us. I hope some of this helps or someone else can offer more I'm still new to this myself.
Wish you relief soon
Tlc
It well may save your eye sight.
I can only second what fayer said about regular blood tests. you have to keep an eye on your bloods and not every dr is up to date about this.
Diamox wears out your potassium , for one amongst others.So, blood tests every two months.
IIH can also have a dramatic effect on your iron and B vitamins. So, the bloods will tell the story, that you may be low in some of these which could explain your exhaustion.
Also, very important, keep your fluid levels up. Dimaox is a type of diuretic and it is quite easy to suffer from dehydration.
But truth is, Diamox takes at least 6-8 weeks for your body to get the hang of it. Usually , you begin to feel better after that , but there are no guarantees.
I was on it for two years and felt tired all the time. I have been on a " break" for a few months now but suspect , I will be back on again soon.
Something my very wise neuro told me back at the start, when I would question my diagnoses,
" In the absence of any findings, in the clinical tests and with a raised opening pressure higher than 20 , the only conclusion is IIH"
It became my mantra for awhile, until I was able to finally accept the diagnoses.
Ask us any questions you would like to run by your neuro in Jan. We can help with the list. A lot of us have had plenty experience at it! Cath.
I just started Diamox about a week ago.
I hate how I feel. Super Queasy, Super Tingling, Super Faint, Weak, Exhausted, Vertigo worse than ever.
But I continue on for 3 Big REASONS.
1. I feel it can save my eyesight if it works for me.
2. I really don't want the shunt surgery if I can help it.
3. I haven't had a HA since starting, Thank God...and I did have the really bad ones daily.
I guess you will have to figure out risk/benefit for you personally and then ask your neuro about other options.