Unxeplained headaches vision loss

[Carebear863]

am a 29 yr old female having severe headaches and migraines daily and recently my vision has been acting up. There are frequent periods where my vision goes completely black or tunnel like for several seconds. I have weakness in my legs and have fallen from it. The back of my head and neck has a strained feeling and hurts when I bow my head. I wake up with a headache, I go to bed with one and have one everyday all day. My cardiologist says its not cardiac related. Can someone help lead me in the right direction of what could be wrong with me? I am getting really scared. I also cant seem to stand bright light and have problems focusing on anything. Am I going blind?
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[Susie1978]

Sorry it took so long to get back to you had a bad headache yesterday so i wasnt able to get online.I don't know of other ways to diagnose ptc other then a spinal tap. I know that I had an MRI of the brain and it showed a partially empty cellua sac and that alot of times points towards ptc. They put me on Diamox but that doesn't work for alot of people and even with me still being on the med. I have to get spinal taps. I think that in the last 3 years I have had about 15 spinal taps thats alot. They can't really do them anymore because of so much scar tissue build up on my back (because of the taps).

                   If you do get diagnosed with ptc alot of times LP's (spinal taps) are the only way to release the pressure at first. They now want to put a shunt in so that my pressure can correct itself because diamox no longer works for me and has some bad side effects.  Have you been to see a neurologist? Alot of family practice Dr.'s don't know much about this condition.  It took along time for them to figure out what was going on with me. I also have Chiari Malformation and that may be the cause of my ptc.  I hope that this has helped in some way, its so hard when you know there is something wrong but the Dr.'s can't figure out what it is.  Don't get discouraged and keep pushing the doctors. My family doctor told me that alot of the neuro doctors have to be pushed to keep looking...He said if you have to go to 3 or 4 before you find one that listens to YOU then do it its your health they are playing around with not theirs. Don't give up on yourself you are worth fighting for...I know I was ready to give up a few times and to be honest there are days that I still do but I have 2 kids to live for. Sorry that this is so long but wanted to help as much as I could....Please keep me informed as to what is going on and I'll help in any way I can.... I hope today you are feeling better

         Susie

[decbaby61]

I sent you message but dont think you got it.  I just found out about this condition yesterday nd after looking at website, I think I have this.  I have at least 20 of the sysmptoms and it gets worse as the day goes on (am best when first wake up in morning).  What meds do you take for this?  Website says if you really think you have this NOT to have spinal tap because it makes it worse, so any other way to diagnose it that you know of?   I am convinced I am going to have to find cause of my neck pains, headaches, and eye pain and vision problems myself as doctors cant put all the symptoms together and come up with anything.  They just want to prescribe more meds and I am definitely anti meds-  Had to take them for last three months but dont want to be on any more--too many side effects!   Any info you can give would be GREATLY appreciated.  

decbaby61

[Susie1978]

Your symptoms sound so much like mine that I actually signed up just to reply to you. I had all of the same symptoms about 4 years ago the pain had gotten to the point that I couldn't even get out of bed and ended up with double vision so bad that I couldn't see anything. The doctors at the er did a spinal tap and found that I had psudeo tumor cerebri (which is increased spinal fluid) It causes pressure on the brain and optic nerves. If that is the cause of your symptoms a lp will help with the symptoms and there are meds. that can keep the pressure down also.  I hope that you feel better soon... if you have any questions please feel free to ask.
             Susie

[decbaby61]

Have you had an MRI of neck or head?  Go see a neurologist ASAP and get one-- as well as tests that Dr. Lacuesta recommends.  And they may also want you to get an
Opth exam if all of above come back normal.  There are certain types of migraines that
specifically affect your vision so it just may be simple as that.  Dont mess around---go to neurologist right away.  Keep us posted!  

decbaby61

[Vanessa Lacuesta]

Hi,

Do stay calm.I personally do not think you are going blind. A consult with a neurologist is what you need for a complete assessment and evaluation. Headaches need to be properly assessed especially if associated neurological symptoms are present.A scan may be requested as well as an EEG to rule out any vascular problems and seizures as the underlying cause of your condition. You may discuss with your physician the possibility of a basilar migraine.This may be a strong dfiferential in your case.

A prompt consult will be able to guide you and prevent further worsening of your symptoms.