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...
So, I've called my neuro's office this morning bc I started getting the horrible pain behind my good eye, with corrective glasses. I have a lazy eye and can barely see out that eye. so, I called and left a message for my nurse. The doctor had told me after my LP he wanted to add another drug to the mix of drugs that I am already on. I will try anything and everything before a shunt. She just called me back and is like well I am about to go home for the day but I will give him this message. Most likely you will hear from him MONDAY! I told her I am in quite a bit of PAIN!!! I can tolerate a lot but I am almost to my wits ends because I had such a relief from the LP and such a good day yesterday and now the pressure is horrendous just in my left eye and left ear. IDK what to do... she(((( (the nurse doesn't understand at all!!!!!))))) then she is like your allergies says your allergic to sulfa drugs and he was probably going to put you on Diamox. I have tried to explain I was taking 2 antibiotic that where sulfa drugs and I came down with the flu and started Tamiflu.. By the 3rd day of being on Tamiflu I broke out in a horrible rash. The third day of Tamiflu was the 8th day of these sulfa drugs and I didn't even take them all. So, my point to the nurse is I do not believe the rash was a sulfa rash I believe I am allergic to the Tamiflu... correct? anyone else agree with me here. Is there anything else I can do for the pain. I took Tylenol yesterday for my back pain from having the LP so I don't wont to take to much Tylenol or ibuprofen. Ive already used heat and what not... I guess I just have to keep trucking through it and hope my neuro doc calls me back before he goes home today and hopefully, hopefully, hopefully he will call me in something or raise the dosage of my Topamax!!!
if you woke up like this all of a sudden this morning after feeling great yesterday then you have to consider that something happened while you were sleeping.
Certainly if the pain is that intense you cannot wait until Monday. I don't like to take pain meds either but if it is that bad this is no time to deprive yourself, see if Tylenol or something takes the edge off. Hopefully you can get someone to prescribe some vicodin or Percocet for you. Options for doctors are the ER of course, or you could call your neuro clinic after hours and have a neurologist paged. It could be your own neuro or whoever is on call. Whether you get anywhere with that is a gamble but it's a pretty easy thing to try.
In regards to your vision though...you can barely see out of one eye? Is that a brand new thing? Because if it is you need to be seen immediately.
He said, If was already experiencing pressure this quickly then it raised a concern that he thought he was going to have to address with me anyways. He thinks that my PTC came from vision problems to begin with from birth and no one knew enough about PTC back then so they treated me for the lazy eye and so on. and tried to correct it with glasses. He wants me to go see my eye doctor again ASAP even though I have an appointment for 3 months away. bc he says that the eye doctor and him have already spoken about that I do need eye surgery to prevent further vision loss.
He just increased my Topamax over the phone this evening and said he would call and check on me in about week or so to see how I was doing.
you have, as Mary would say, a neuroidiot. see this reference, and I know there are a few others I can't find right now, on the determination that the risk benefit ratio of trying Diamox in a sulfa allergy patient is definitely in favor of trying it. based on scientific evidence and published in PubMed. show this to him.
he gave you nothing for pain??
the ONSF might be a good idea, certainly better than a shunt, if you have these issues with your vision. however if you have other symptoms don't give up or let them give up on you once they do the ONSF. make sure you address sleep apnea.
http://doctorstevenpark.com/sleep-apnea-basics/upper-airway-resistance-syndrome
it can be subtle and present very differently from the typical and I can almost bet your neuroidiot has never heard of UARS.
Will it hurt to take either a Tylenol or a ibuprofen this far out from the LP procedure? my discharge paper work said to be careful about taking them bc it could cause not to clot and then I would have to go back in for them to patch it. That's why I been sucking up the back pain.
ONSF is optic nerve sheath fenestration and it must be what he meant.
As far as the back pain, I have been good to take OTC pain relievers after LPs without issues to help the pain. The first two days I take lower dosages like if I normally take two Advil, I'll take one and I haven't had an issue with not clotting and having a low pressure headache start. Ice is usually the most helpful for me. Keep ice on your back to keep the inflammation down and eventually it will calm down as a whole. With my last LP I was on ice for two whole days and then popping Advil like crazy as I had to go back to work and couldn't ice. Just be careful as Advil/ibuprofen can raise your pressure. I can't take Tylenol so I am a little stuck. If you start to think you are getting a spinal or low pressure headache you can stop the Tylenol or Advil and try to treat it at home for a good while by lying flat, caffeine, and hydration. That will give the blood thinning effects of the Tylenol or Advil time to get out of your system and give the blod patch a better chance of working if your docs would decide to do one. I had a small leak from a LP and a spinal headache for three weeks and my neurologist at the time was testing the theory that leaving me that way and refusing to allow me to get a blood patch would cause a remission of IIH. He was wrong. So one can never be to sure what a doctor will decide to do. I hope that helps with how to handle the LP pain. Most people clot just fine. The reason I didn't with that one was it was a blind tap with a med student doing it after four tries and several repositions of the needle once they got it in. I don't even want to know how big if a whole the put in my spine on that one. My other one wasn't an issue at all. It sounds like you LP was pretty simple so I would imagine you will be fine to do what you need to to find relief for your back at home. Some of the more med minded folks might have more ideas for you but that has been my experience.