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Mini stroke? Pseudotumor cerebri? Bad migraine? What is this?
I've always had headaches and nausea etc and never paid any attention to it. I always though it was a sinus problem and ignored it. My true problem that worried me started out 2 years ago when waking and seeing dark spots covering my eyes. Not knowing any better I went to a regular eye dr. He sent me to specialist after specialist to find papilledema and hemorrhaging in there. After a CT scan they ruled out a tumor and told me it was pseudotumor cerebri. They started me on diamox and topamax, eyes cleared up but headaches never went away. In fact, they got worse. All they did was give me pain pills to ease them. Now my eyes are still proven to be fine, and I'm still on the meds but new symptoms have started: pain behind my eyes, weakness of my right arm and leg and now I have dizzy spells (more like going from sober to full drunken state in a matter of ten seconds) to the point where I can't pick up my head or move at all. My words become stuttered and/or slurred as if I'm in the middle of a stroke! No dr believed me this was going on until he seen it with his eyes (my neurologist, mind you) So again, he has no clue what's going on and has just given me more pain pills to ease my troubles!!!!! So here I am with more headaches, more eye pain (which are now getting to the point of me waking up with pink rings around my iris and bloodshot eyes???) and the weakness is continuing and the drunken spells went from one every week to now almost everyday lasting from 5-10 minutes each spell. Is this really from this pseudotumor cerebri???? What is going on with me? Someone please help. I'm young and no one in my family has ever had these types of problems. I'm desperate!!
To the op posting the comment, YES mini strokes can happen. My mother got diagnosed with PTC and has started having strokes there after. Sometimes she has then one week apart and sometimes one month apart. She has had some that has knocked out use of her legs and then she has another and her leg use comes back.
Several strokes she has suffered has killed her and she has been resusatated.
If we keep her stress and blood pressure lower she does better.
She refuses to have a shunt because according to her doctor there is a 40% chance success rate.
I have a shunt myself, and was born with hydrocephalus. I can tell you that i dont even notice the shunt. After 27 years you forget you have it.
Hope this helps, doctprs are completely dumb about ptc, if your doctor or nue'er ologist gives you crap run run run and find a guru
Several strokes she has suffered has killed her and she has been resusatated.
If we keep her stress and blood pressure lower she does better.
She refuses to have a shunt because according to her doctor there is a 40% chance success rate.
I have a shunt myself, and was born with hydrocephalus. I can tell you that i dont even notice the shunt. After 27 years you forget you have it.
Hope this helps, doctprs are completely dumb about ptc, if your doctor or nue'er ologist gives you crap run run run and find a guru
Were you on any medications before this all of this started? It IS possible you have PTC; however, there would have to be some kind of trigger for it--be it birth control pills, hypothyroidism, being overweight, or even being pregnant.
My money's on hypothyroidism contributing to something, whether it's PTC or not. Have you been evaluated by an endocrinologist? Being hypo can make you feel like you're in a constant brain fog, among a million other things...it's rough and incredibly common. I'd recommend getting some basic thyroid bloodwork done just to rule this out (if this hasn't already been included with the recent bloodwork you mentioned). I can't say I've heard of hypothyroidism causing such severe neurological symptoms, but hey, you never know.
Did your neurologist do any kind of spinal scan? Given that MS runs in your family, it's worth having it checked out completely, and this would be a useful test. If not, what is the latest CT scan you mention--another one of your head?
I hope you figure out what's plaguing you soon.
Nice username, btw!
My money's on hypothyroidism contributing to something, whether it's PTC or not. Have you been evaluated by an endocrinologist? Being hypo can make you feel like you're in a constant brain fog, among a million other things...it's rough and incredibly common. I'd recommend getting some basic thyroid bloodwork done just to rule this out (if this hasn't already been included with the recent bloodwork you mentioned). I can't say I've heard of hypothyroidism causing such severe neurological symptoms, but hey, you never know.
Did your neurologist do any kind of spinal scan? Given that MS runs in your family, it's worth having it checked out completely, and this would be a useful test. If not, what is the latest CT scan you mention--another one of your head?
I hope you figure out what's plaguing you soon.
Nice username, btw!
Definitely follow through and 210 is abnormal. This disorder does cause symptoms that many doctors refuse to recognize. I am living proof. Dizziness, every kind of headache known (every day some type of headache), blurred vision, dimmed vision, tracers in my vision, sensitivity to lights and noise, excessive sleepiness, extreme mood swings, hormonal imbalances and deficiencies, heart palpitations, high heart rate, high blood pressure, visual floaters, difficulty straightening up when walking (similar to parkinson gait without tremor) as if back muscles pulled, joint paint, muscle pain, muscle cramps, muscle twitching, ringing in ears, pulsing in ears, fluid draining from nose (dural tear), etc. I am trying to list them all. I started having migraine at 9. My family never took me to the doctor. By the time I was in a position to take myself doctors just passed it off as migraine disorder. By the time I got so sick that I had every single symptom on the list 30 years had passed. The worst years were the last 7. Diagnosed on October 14, 2010 by my neuro who thought there was nothing wrong although I had papillidema (another symptom). My CSF OP was well over 400. My neuro would not give me the actual number. I am certain that I would have not survived without Diamox which is actually my new best friend although I am already doubling and suspect at some point I will have a shunt. Every symptom is gone except during my menstrual cycle when it seems that my pressure elevates (probably that lovely estrogen). I was sick when I weighed 120 and I am sick at 220. In fact at the age of 9 I am sure I weighed only 60 lbs. I first blacked out at 11 but that was also ignored. This disease deserves more attention and if I can get back on the medical degree track after being sick for so long I plan to do my best to seek research and answers. Please do not let doctors ignore your symptoms or say they are unrelated because in doing so they are not learning how to treat future generations. Much love and I hope one day we all have a cure and not just tingly Diamox hands and feet.
I am being tested for PTC now. My best advice for you would be to get the lumbar punture. They wont be able to diagnose you without it. The quicker you get it done the quicker they can help.
Back in July I got Meningitis and since had several problems as follows and seen a nurologists who said I had possible Psudotumor but my pressures were only 21 which were high but not high enough even though I have pressure headaches flashes in my left eye followed by my eyes turning red also got muscele twitches in my face and mouth
Now I just had a Stroke where I got several twitches on my right side of my face folowed by complete paralaysis on my right side of my body The MRI showed that I had a spot on my deep sinus and i saw a ENT Specialist and he said he thinks its psudotumor. IT's Like Wow... Where to go from here and does this disease cause strokes?
Now I just had a Stroke where I got several twitches on my right side of my face folowed by complete paralaysis on my right side of my body The MRI showed that I had a spot on my deep sinus and i saw a ENT Specialist and he said he thinks its psudotumor. IT's Like Wow... Where to go from here and does this disease cause strokes?
Nah, I passed on that too lol. too chicken, I guess. I'll just keep patiently waiting I suppose. (for a better diagnosis, that is! lol) thanks for your help.
Have they done a lumbar puncture to find out how high the pressure is? I passed on the LP because I was too scared at the time but I hear it's done so commonly now. So you still have the pappiledema? I know what you mean about the Diamox, the side effects are yuckky! Maybe they can lower the dosage for you? I had all kinds of face tingling and feet falling asleep sensations on Diamox. I am also on Topamax for migraines. It's taken me weeks to get used to that drug, felt like a zombie on it..still can't finish sentences, find words, etc. Well, keep your chin up, this stuff will eventually pass. But you have to rule out any other disorders. Sometimes PTC is idiopathic, meaning there's no known cause. Thats how it was in my case.
No shunt yet, was hoping I didn't have to go that route. But at this rate, who knows?! I refuse to be put back on the Diamox. The side effects were too much for me to handle. The topamax was helping relieve the pressure a bit, but it's obviously not enough. Unless there's another miracle drug out there to try first, I may be given that option next. I hope not.
They haven't gotten past the PTC yet! That's what's irritating me. I'm not obese or anything, just got a few pounds here and there. And I'm very active at work and such. They saw papilledema and right away, she's not a toothpick, must be PTC! At any rate, just went for another CT scan and bloodwork, awaiting results...sigh! If nothing with the tumor bit, I'll suggest the autoimmune disorders because that was my concern as well. I have no family history other than an uncle with MS. Past that, no clue. My grandparents were all passed on before I was born. My dad passed away from cancer in 99 and my mom just has no clue other than she doesn't think anyone had these symptoms lol. I'm at a loss here, really. Hopefully something will come from these last tests. If not, I'll go to the end of the earth just hoping they find something. Hate all the tests, but what can you do?! I hope nothing serious, but then again I do, just so I know what's wrong. You know?
Dear Jackie,
I had pseudotumer cerebri in 1994, it usually happens to overweight women before the age of 50. I can't say I was that overweight at the time, in fact I was on an exercise regimen and losing weight, the PTC was a complete mystery. Like you I had black spots in front of my visual field. The docs found papilledema. At first they thought I had a brain tumor but the MRI didn't find any tumors - did find a couple of white spots - presumably from migraines. I went on Diamox for about 8 weeks. However I also have a hx of dizzy spells, migraines, etc. but it was not from PTC that I know of. You have some really strange symptoms, like the pink rings around the iris?! That sounds like iritis. Have you gone to an internist or rheumatologist and done some bloodwork, like an ESR, ANA, etc.? You have to rule out some kind of autoimmune disorder like lupus also that could affect the brain and eyes. If thats all normal then your neurologist should keep close tabs on you and your symptoms and follow up with -...I know..sigh...more tests.
I had pseudotumer cerebri in 1994, it usually happens to overweight women before the age of 50. I can't say I was that overweight at the time, in fact I was on an exercise regimen and losing weight, the PTC was a complete mystery. Like you I had black spots in front of my visual field. The docs found papilledema. At first they thought I had a brain tumor but the MRI didn't find any tumors - did find a couple of white spots - presumably from migraines. I went on Diamox for about 8 weeks. However I also have a hx of dizzy spells, migraines, etc. but it was not from PTC that I know of. You have some really strange symptoms, like the pink rings around the iris?! That sounds like iritis. Have you gone to an internist or rheumatologist and done some bloodwork, like an ESR, ANA, etc.? You have to rule out some kind of autoimmune disorder like lupus also that could affect the brain and eyes. If thats all normal then your neurologist should keep close tabs on you and your symptoms and follow up with -...I know..sigh...more tests.
I will try to write you an email tomorrow. I have to get my dad to the hospital for his post aneurysm angiogram at 7am so I'll write all about pseudotumor tomorrow.I'll send it to your email @yahoo
my daughter has pseudotumor and she had a shunt put in and that saved her from going blind. She still has many many problems from it. If you want to know more just let me know. I can tell you all about it. Some of your symptoms seem like what would have happened to my daughter if she didn't have the shunt in right away. Has anyone mentioned this to you? I think it saved her but it sure did cause some other trouble. write back if you want to know more, I have been through all of this for 3 years now. Good luck
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