Re: Shari -PTC info

[Guest guest]

Ya'll...............

Sorry to whine about PTC on a "breast implant" board! I just wanted to elaborate more to help Shari or someone else decide if it is or isn't what they are having going on!!!

PLEASE don't take this the wrong way, because I am in no means doubting your neuro problems AT ALL, but you were saying you can't believe your docs haven't mentioned PTC to you... and at least to me, your situation doesn't sound like PTC.

I know it's rare, but they are aware of this these days. (I was diagnosed in the 90's, and it most docs still weren't familiar with it yet. Things were different then.)

Strictly concerning Pseudotumor Cerebri -I would find it hard to believe someone could have it these days (with doctors being aware of it) and them not know you had it for 2 years. In fact, can't imagine someone having had it 2 years and not being 100% blind or dead without having had therapeutic spinal taps and/or Diamox.

I know you said you can't handle hearing your son play, but the fact you're able to get up and take care of him and SEE him doesn't sound like PTC for so long... I mean, I was in bed unable to walk for 6 months. I couldn't even bathe myself, much less take care of a child.

And it did take a few months to get that way, but it was only maybe 3-4 months. During those months the first signs were the mental issues, fainting, migraines with nausea.

Then once the onset comes on, the brain pressure is that of people who have been in car accidents who have brain swelling -and there is minor brain swelling they can see on MRI. You can imagine what that feels like. I know migraines can be debilitating, but with PTC ---it's like a migraine times a hundred.

All you can do is scream to let the pain out. Until you get relief from a spinal tap or Diamox -it's screaming 24/7 unless you take enough medication to just knock yourself out and stay so doped up that you can't NOT sleep. Drugs don't help. You are literally inconsolably in pain. Migraine drugs don't work on a PTC migraine, either.

Your eyes cross and swell shut from all the cerebral spinal fluid built up in your brain. You get papillaedema (swelling in the optic nerves) so bad that you can't be in light AT ALL. My peripheral vision was lost almost immediately. My vision stayed 14/20, but my blind spot enlarged. ---It's not just blurred vision, it's vision LOSS.

We had to put tin foil on the windows, close the blinds, and tape black poster board over that, with curtains closed over to keep any ray of light out of my bedroom. You literally just have to live in pure darkness and silence. When I went to the doctor, they shuffled me into a dark room to wait because I couldn't be in waiting room light. (I also kept on a black out mask over my eyes, and kept a black windbreaker over my head.)

I couldn't drive for over 2 years, then when my vision got to the best it was going to be I have driven around town for the past couple (when able), but it's very hard and I only do it when I absolutely have to because I feel it's dangerous. It sucks too much energy out to have to be so cautious to make up for what I lack.

I forgot half my life. It wasn't quite a bad as people with amnesia, but you literally forget things like who you were friends with in school, or places you've been, things you've done ---until something clicks and these things come back to you. Even now 8 years later I'll be watching TV or will be right in the middle of something and I'll get a thought and look over at my husband and say "We went to such and such park and did this or that!!!" I'll run into people I went to school with, they'll come up and say "Hi Brigite!" and I say "I have absolutely no clue who you are." They'll be like "I'm offended! We were best friends in junior high!" (etc) Then I remember, but it took a lot of reminders to get back the past. Again, not quite like amnesia, but similar.

And my short term memory -forget it. I forget what I did this morning by night sometimes. I really have to think about things to remember them. My calendars are all full of reminders for simple things.

If you had PTC ---someone probably would have known it by now. Maybe mine was just a bad onset, but I swear I think it's typical. Maybe (I think ?) the other person who had this will also tell you what her onset was like and you can compare it to hers, too, but I've read mirror stories to mine with PTC cases.

As you already know, only a spinal tap can confirm diagnosis for sure, though, and if you aren't intimidated and/or think these symptoms sound like you still and you want one---I wish you much luck with this and HOPE it isn't what you have. It's a long painful road... not that it's any worse than what anyone else has with other health issues they think you have. It's all horrible.

Having said that, many of the symptoms (motion sickness, debilitating migraines, eye pain) seem to be typical of many neurological problems. My friend with MS has the same symptoms, minus the blindness and severity of the pain. It isn't just a PTC thing. If you aren't comfortable with the things your neuro has diagnosed you with, keep seeking other opinions until you're satisfied they aren't missing anything!

You might also want to consider having an eye exam by an OPTHAMOLOGIST -not just an optometrist. They use stronger stuff to dilate your pupils (it burns like acid in your eyes) and look into the back of your optic nerves for signs of swelling. I get them done every 6 months. It's my first line of defense to watch for early signs of fluid in my eyes. It doesn't confirm a PTC diagnosis, but if you have PTC you WILL show signs of it in your eyes. It may be an easier route to help rule PTC in our out than a spinal tap. (My eyes are all full of scars now.)

What ever it is ---I know it's so hard going through a neurological diagnostic process, but hang in there!!! You're in the prayers of many.

Brigite

In a message dated 7/9/2006 10:29:06 AM Eastern Standard Time, halvey70@... writes:

well - I have an appt next Tues - I am gonna bring it up.... whether or not they will test me we will see....takes a spinal tap I guess to see it and I am finding it really hard to believe after all I have read that no doc has ever mentioned it after my years of headaches suffering.... especially since it doesn't supposedly show on the tests they have done....

sad but true.....hmo probably....

[Guest guest]

My PTC actually started with a mild headache, felt like a sinus headache, and severe doubled vision. I was more concerned about the doubled vison at that point so I went straight to the eye doctor. He could see right away that my optic nerves were very swollen and suspected PTC, which I had never heard of at the time. Of course I had to go through all the MRIs and CAT scans and all that later just to rule out any other problems, tumors, etc. I think it was about 2-3 months after that I started to have the debilitating headaches, vomiting, bouts of blindness, etc. Now my memory is almost completely gone, I can't even remember my kids birthdays or how old my husband is, even if they remind me I forget it again within 2 hours. For me that's almost worse than the headaches.

If anyone suspects they have PTC I think the first place to go is the eye doctor, the optic nerve is normally swollen with PTC. Lumbar punctures (spinal taps) can be very dangerous if done by an inexperienced doctor, not to mention very painful, I wouldn't be in a hurry to ask for one unless I saw some optic nerve swelling first. Everyone's PTC is very different, some people have it very mild and others very severe. Contrary to what the doctors say, it's not only overweight women who get it, I know men and children and underweight women who also have it. And I've yet to see a case resolve itself because of weight loss. I wasn't overweight when I got PTC and I've lost weight since then and it's still gotten worse. I think the doctors don't have answers for us so they try to blame US for being sick, by saying we're overweight or whatever else they can come with...just so they don't have to admit they don't know anything and they can get us out of the office and send us another bill. That's much easier than trying to help us. That's my take on it anyway.

If you had PTC ---someone probably would have known it by now. Maybe mine was just a bad onset, but I swear I think it's typical. Maybe (I think ?) the other person who had this will also tell you what her onset was like and you can compare it to hers, too, but I've read mirror stories to mine with PTC cases.

[Guest guest]

hi all

in reference to the PTC discussions.... didn't mean to stir anyone up about it.... I have had severe debilitating headaches for years but the last 4 months or so have been getting gradually worse and worse..... last week my hubby had to take off work as I was bedridden for three days - didn't bathe, etc.... eyes are getting worse - my vision isn't that great anyways - nearsighted rx -3.75 in both eyes.... need an eye exam as it has been almost 2 years... been putting it off due to $$, etc.... getting blurred vision with the headaches, dizzy spells, and of course the massive seizure episodes..... don't know if they are related to the headaches or not but I tend to think so as the headaches leading up to them were progressively getting much worse for several weeks.... no meds would work - not migrane, not morphine... nothing..... Took a shot last week of 100mgs of demerol w/ 25 of phenergren - along w/ toradol - didn't even take the edge off..... not even a little... cryed for days. No screaming - not yet but almost there....no blindness but lots of visual type disturbances... seeing little dots moving around... one eye blurred and one not... weird things like that. I just had never heard of PTC and looked into it and it looked weird that it had never been brought up by my docs w/ my complaints.... see pain mgt spec once a month, neuro, etc.... not by any means saying I have it - just saying it looks like I may be headed into some of the symptoms and thought I would look into it and ask my docs about it.... nobody has ever been able to tell me any other reason.... all this pain - every day - no explanation.... just pill pushing from these guys.... I want answers - not more rx's. I find it really odd that I have been worked up blood for everything, no allergies, no sinus issues now, no tumors, not migranes.... been to the ER 4 times in the last 9 months NOT including the seizure thing - just the headaches - test after test... x-ray after x-ray.... nada

I am rambling but there just has to be some type of answer here and not narcotics for the rest of my life... there is a reason why this is happening and they can't tell me.... it's so frustrating. I stopped taking the b/c pill as I thought that may be it - nope that didn't help either.

oh well - maybe someday I will get an answer

shari

[Guest guest]

Brigite, Please tell us more about the PTC support group . . . How did it come to be formed and how did they find they had tubes in common? . . . Or are did the tubes come after the diagnosis? PTC sounds truely awful! . . . I take it that you have flares where it gets really bad, then subsides with a spinal tap or the medication. . . How frequent are the flares? I'm wondering if Shari's first seizure was the legitimate one. Then, after bumping her head that the swelling precipated the rest? If there could be loose silicone in her brain that her body is reacting to. One thing . . . regular MRI's don't necessarily show migrated silicone . . . One silicone sister had silicone granulomas that could be seen as well as felt. . Yet the MRI didn't detect them. . . An old test, xerography, could see migrated silicone, but those machines were pulled

about the time the implant problems became public. COIL MRI machines are better than the regular machines, but not perfect. Rogene

[Guest guest]

Most symptoms lessen or reverse upon explantation and detoxification.

Lynda

At 12:01 PM 7/9/2006, you wrote:

>My PTC actually started with a mild headache, felt like a sinus

>headache, and severe doubled vision. I was more concerned about the

>doubled vison at that point so I went straight to the eye doctor. He

>could see right away that my optic nerves were very swollen and

>suspected PTC, which I had never heard of at the time. Of course I

>had to go through all the MRIs and CAT scans and all that later just

>to rule out any other problems, tumors, etc. I think it was about

>2-3 months after that I started to have the debilitating headaches,

>vomiting, bouts of blindness, etc. Now my memory is almost

>completely gone, I can't even remember my kids birthdays or how old

>my husband is, even if they remind me I forget it again within 2

>hours. For me that's almost worse than the headaches.

>

>If anyone suspects they have PTC I think the first place to go is

>the eye doctor, the optic nerve is normally swollen with PTC. Lumbar

>punctures (spinal taps) can be very dangerous if done by an

>inexperienced doctor, not to mention very painful, I wouldn't be in

>a hurry to ask for one unless I saw some optic nerve swelling first.

>Everyone's PTC is very different, some people have it very mild and

>others very severe. Contrary to what the doctors say, it's not only

>overweight women who get it, I know men and children and underweight

>women who also have it. And I've yet to see a case resolve itself

>because of weight loss. I wasn't overweight when I got PTC and I've

>lost weight since then and it's still gotten worse. I think the

>doctors don't have answers for us so they try to blame US for being

>sick, by saying we're overweight or whatever else they can come

>with...just so they don't have to admit they don't know anything and

>they can get us out of the office and send us another bill. That's

>much easier than trying to help us. That's my take on it anyway.

>

>

>

>

>

>

>If you had PTC ---someone probably would have known it by now. Maybe

>mine was just a bad onset, but I swear I think it's typical. Maybe

>(I think ?) the other person who had this will also tell you

>what her onset was like and you can compare it to hers, too, but

>I've read mirror stories to mine with PTC cases.

>

>

>

[Guest guest]

whats PTC ?

[Guest guest]

Pseudotumor Cerebri...

[Guest guest]

Shari -I wasn't worked up! LOL I promise! I was just telling you more info for you to compare and see if that's a venue, and recommended the eye exam (as also recommended). They can see it in your eyes if you have it and that's an easier route than a spinal tap.

Birth control pills ----another issue. BC pills can CAUSE Pseudotumor Cerebri. Which is a possible link to PTC and blood clotting disorders. If you have PTC, you can't take ANY BC pills AT ALL. Not one out, not shots -NOTHING. So if you're already prone to neuro problems, BC is probably not a good idea for you at all -so ask your neuro about it before ever taking it again!

Good luck!!!

Brigite

In a message dated 7/9/2006 4:51:57 PM Eastern Standard Time, halvey70@... writes:

I stopped taking the b/c pill as I thought that may be it - nope that didn't help either.

[Guest guest]

Shari,We'll keep praying you don't have PTC! . . . It sounds like you've been having a horrible time though. . . I know it would be a relief to get some answers . . . But I'm positive you don't want this! . . . Please give your loving hubby a hug for us and tell him how much we appreciate the loving care he gives you!Love,Rogene