Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Hi everyone! I am a 28 year old mother of 3. I have extreme anxiety disorder, pcos, and factor IV none of which has given me any major problems except of course the anxiety which is pretty bad. I visited my regular doc about 5 months ago because I was having extreme head pressure, and ear pressure so bad it felt like I had a ear infection even though I didn't. He said it was just my allergies/sinuses and that it would go away when the weather got nicer. It never did. I also get headaches on the right side of my head. It moves but is always on the right side. It can be right above my eye, behind my eye, and more recently sharp pains moving from my temple to behind my ear. I decided to schedule a eye doc appointment because I then started seeing flashes/sparkles in my vision. Its especially when I stand up or go from light to dark. It will also sometimes get darkish and I will see almost like a static and I'm extememly sensitive to light. It can be pouring rain and I still need sunglasses. During the exam he noticed I have pappilledema. I am ordered for a MRI next Tuesday. With my health anxiety I am of course freaking out!! I've convinced myself I am going to drop dead at any moment! He had to explain to me that it could be a tumor which of course made it skyrocket! I visited my regular doc that same day and he's pretty convinced its Pseudotumor but of course we won't know until all the testing comes back. To even think about getting a spinal tap sends me straight into panic mode. Don't know how I'll ever survive that one! Can anyone tell me if my symptoms do sound like Pseudotumor? I'm just really freaking out right now! Thanks for any feedback!
do you have sleep problems?
you do have to just get through the spinal tap without freaking out, because any type of valsalva will spike your ICP and change the results. a valsalva is created when you cough or sneeze or push going to the bathroom, however it is created when you cry also. this will spike your headaches. try not to cry. don't hold your breath. just hyperventilate and let the tears run down.
make sure they do the spinal tap under fluoroscopy as that will make it easier. I have done very well with mine, so it doesn't have to be terrible.
my son had spinal taps under propofol anesthesia.
if you wake up with a racing heart, it is probably because you are being essentially waterboarded in your sleep by your upper airway collapsing. think about how you might feel during the day, if you are spending 8 hours of your life being waterboarded in your sleep?
I'm glad you had the septum done, but you should have also had turbinates reduced and the rest of your airway evaluated. there are three places the airway collapses; nose, palate, and behind the tongue. you can try Afrin at bedtime to keep your nose clear in sleep, and don't ever sleep on your back. you can prop yourself to try to stay off your back.
read this to see if you fit the profile:
http://doctorstevenpark.com/sleep-apnea-basics/upper-airway-resistance-syndrome
btw, a deviated septum is evidence of a narrow airway. the bony jaws in humans are shrinking. when they are not big enough, the soft tissue in the throat develops as it was programmed to do, despite the jaws not being large enough to contain the tissue. as a result, the nasal septum buckles, the nose develops a bump at the bridge and the tip hooks. this is not normal anatomy, it is abnormal and evidence of small maxilla and mandible.
this is what I had to do:
http://www.ihaveiih.com/t1168-i-m-doing-much-better-now
Hi nikki,
Sorry you are going through so much, i know how an anxiety disorder can throw a wrench in your plans to calmly get through things. A little tip that helps me is during the quiet worry times i say the words ..im not in immediate danger right now, nothing bad is happening to me, i can rest. Ive had ptc for 15 years and i agree ask for fluroscopy guided spinal tap, the tap itself is not too bad.Theres a short sting of the local freezing injections before the tap but not that bad so dont worry there. You wont really feel the actual tap once the freezing sets in. You will probably feel instant relief from the headache for a while. Though the 1st week after may involve laying down if they withdraw extra fluid it sometimes causes a temporary low pressure headache when upright. So take some time off after and rest. Ask your neuro to scan your transverse sinus vein as johns hopkins has had some success with stents placed when there is evidence of narrowing there. If you look up johns hopkins ashleys story on youtube there is more info there. Take care, and if you have had 3 kids the spinal tap is not even on your radar its like a nudge from a sweet little kitten compared to that! Only thing to remember is wear full coverage boyshort type undies since the gown is open at the back and make sure not too high waisted so your lower back is accessible. They use red surgical scrub in order to see the area has been cleaned and they do not like getting it on clothes so i wear black boyshorts and tell them i dont care about the dye. I usually call ahead to check how each hospital does it and it aleviates my concerns so i know what to expect.
I'm still recovering from the spinal tap. All I can say about that is the actual procedure was easy but the recovery was difficult, for me. Have lots of love, help and support, and patience. The doctor told me 24 hour recovery. It's been almost a week. Don't expect to feel normal again right away. I wish they'd been more honest up front about the possible recovery period. I kept panicking that something was wrong, but for some people it really just takes time and lots of fluids and rest.