Hey Karen I just read your comment and we have the same thing. Anything that you could share with me could really help I am so tired of LP's and meds I am considering the ventricloperitoneal shunt but am really scared.
I don't know if this will help but for over a year I have had this never ending migraine about 2 months ago I was told I have PTC (pseudotumor cerebri). I don't know that much about it yet other then spinal taps take the migraine away for a few days and that the meds really suck. might be some where for you to start the only bad part is the only way to find out is to get a spinal tap done to messure the pressure. I hope you feel better trust me I feel your pain. - Krista87
hi I've had those same symptoms for years now.. I'm 41. I had the head pressure, which worsened when standing, funny numbness, coldness on the top of my head, what also felt like sinus pressure, a blocked nose, tinnitus (ringing in the ears) popping of my ears etc.. but recently with the onset of anemia from excessive menstrual bleeding I started having visual problems.. I'd lose vision on standing or I'd see wavy like lines for several seconds. I went to the ER where they saw some swelling on my optic nerve.. I went to the ophthalmologist who dilated my eyes and voila.. papiledema.. I then had an LP and CT scan.. the LP show increased inter cranial pressure and the CT was normal. I also had an MRI which was normal... I was diagnosed finally after 10 years with pseudotumor. Mind you I had my eyes dilated also back when I was complaining and there was no swelling. You need an LP to diagnose pseudotumor.. but yes there are tons of diseases that could cause these symptoms. A vast array of autoimmune diseases, but if you've had an MRI and CT scan that will rule out much of it.. You need more tests. I now need a sleep study and I wished they would take my anemia in consideration as a serious cause of this. I am overweight so they think that may be the chief factor. The visional obscurations started with the anemia tho. I know B12 deficiency is a cause for this. Right now they are treating the high pressure in my head. I was told not to go on roller-coasters which will surely blind me.. I'm not sure about flying on airplanes, but high altitudes are also a no no. I am being started on diuretics for now but may have to undergo futher LP taps.. I sure hope I can reverse this as it can lead to blindness if coupled with hypertension which i also have
I hope all of you find out what is causing your symptoms
I saw the ENT a week and a half ago.. she x-rayed my sinuses and said I have a raging sinus infection... the mucous is just clogged and trapped up in there. So I am on an antibiotic for 3 weeks, took a steroid dose pack for a week, an expectorant, and a nasal spray. So far the headaches are better but not gone completely yet. The doc said to use Afrin nasal spray right before my plane takes off when I fly next week, and I bought some "EarPlanes" ear plugs for the flight too in hopes of preventing misery! I hope the sinus problem is the simple answer to my headache problem.. we shall see.
I just received my results from a CT scan and have to go and see a neurologists - I was having headaches as well. but these felt worse than your normal "head ache" I'm actually on this forum to see if anyone can tell me exactly what this mean - check out my diagnosis "Mild periventricular area of increased T2 signal as well as subtle focus of subcortical white matter increased T2 signal involving the right frontal lobe....Cannot exclude white matter disease.
So my advice is to get you a CT scan to make sure nothing is going on in the brain that might be causing those headaches - Everything I read about white matter disease is scaring me blind.
I'm having similar issues myself. Will check back in with you guys once I get a new doc appt as well. I am currently out of sick time :*( Just to note, I have regular/low blood pressure, 32 y/o female, no prior history of migraines but have been diagnosed as having them. I have pressure in my head and can feel it behind my eyes and the back of my head when I stand up quickly, also when I stretch in the morning. My gums bleed easily and seem redder than normal but my dentist says I they are healthy, no gingivitis etc. I currently take Valium and Ibuprofin to help with the discomfort but it does not eliminate it. I also get numbness and tingling in the back of my head and have been going to an osteopath for manipulation to see if he can unkink something. 3 treatments so far and no luck. Sure does feel good though....*sighs* On a final note, all of this seems to have started after I was sick with Pneumonia/Bronchitis and had several dental appts...
I have been having the EXACT same problems you describe and I did have to fly with this problem. I passed out on the plane but I'm not sure if that was the medication I was on or what (They first thought I had a sinus infection so I was on medication for that) I have had this since July. I have been to the GP,dentist, eye doctor, ENT and neurologist. They have done many tests and tell me I have migraines. They have given me several pills to try and help with the pain but nothing helps. I have been on Topamax for about 3 weeks and that is not helping. Out of desperation I'm trying massage/chiropractic therapy. It is helping some but not completely. PLEASE post on your next apt. and I'll do the same. I go back to the neurologist in a week. The strange thing is I could count on one hand the total amount of headaches I had before this and I'm 42 ! Hope you get some answers, I'd love to know what they tell you !