Pressure in head/CNS lupus?

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Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 10/15/2009 12:02 PM (GMT -7)   
ok. I had 2 seizures at age 15 with 2 yrs treatment with carbatrol and haven't had any since. I wasn't diagnosed until earlier this year but started having major probs sept of 08 however this does not include the seizures etc. Can you have vasculitis one time and then it go away? I was never tested for lupus then because I didn't show signs of psychosis my neuro said. I have had abnormal EEGs since then however. I do get headaches now and like the one I have at the moment is alot of pressure and makes me feel very "out there" and almost floaty feeling. I tend to stare off a lot and cant concentrate. Can this be CNS involvement or what? My drs and I are still trying to put the pieces together. The only thing the MRI and CT showed were mild mastoiditis. Anyone had these problems? Hope you all are well. -Lupie Britt
 
 
*Lupie Britt*
 
-UTCD(Lupus)- 
Plaquenil- 200mgs x2 in the mornings; Naprosyn- 500mgs twice a day; Flonase Nasal Spray- twice daily; vitamin- once daily; Protonix- 40mg once daily; Dexamethasone suspension for ulcers; occasional excedrin migraine.


Raven1954
Regular Member


Date Joined Sep 2009
Total Posts : 31
   Posted 10/16/2009 4:08 AM (GMT -7)   
Lupus vasulitis or cerebritis as the rheumies like to call it(all the same thing),Seem to have different manifestations for everyone,like all things lupus,the great shape changer. Had never had any cns symptoms for 25 years,then started having severe sinus headaches,which never had before either,then out of blue had a stroke while watching t.v. After all tests,found the cerebritis,plus huge mass,encompassing whole side of left lower face,in every sinus cavity there was.2 surgeries for that,plus i.v. cytoxin for cerebritis.Headaches and nausea,loss of balance,focal seizures all come with the cerebritis for me. I take oral phenergan 3 times a day to deal with the nausea,really helps,headaches unreal,time my phenergan with pain meds.hope this helps. God Bless, Namaste Raven1954
sle since 1986, cerebritis,pre diabetic, peripheral neuropathy,mvp cataracts,degenerative disc dx. liver failure due to tylenol for to long,Meds: prednisone,inderal. synthroid,tegretol,nasonex,phenergan,dalmane,valium for fibromyl. dilaudid q8 for pain,cytoxin iv every 6 months,asa daily,albuteral inhaler,frequent antibiotics. Learning to live a differant life now, cpap for sleep apnea.Life is not a journey to the grave with the intention of arriving safely,in a pretty and well preserved body,but rather to skid in broadside,thoroughly used up,totally worn out and loudly proclaiming-WOW,what a ride!!!


Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 10/19/2009 1:03 PM (GMT -7)   
Wow. Im sorry about all that Raven that is alot to deal with. I read about the severe sinus headaches and it caught my eye, I get this pressure in my head as I described in the last post and was wondering if yours are anything like mine? Its just so much pressure all over my head but concentrated in my temples and forehead. Its usually just pressure but I do get some sharp pain with it at times and dizziness/out of it feeling and parts of my head can be tender to the touch. I tend to space out a lot which is what I have heard happens in complex partial seizures but im not sure if there would be any connection. Hmmm.....
 
 
*Lupie Britt*
 
-UTCD(Lupus)- 
Plaquenil- 200mgs x2 in the mornings; Naprosyn- 500mgs twice a day; Flonase Nasal Spray- twice daily; vitamin- once daily; Protonix- 40mg once daily; Dexamethasone suspension for ulcers; occasional excedrin migraine.

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