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...
I am just at the begining stages of getting diagnosed. I have been seeing 'lightning' in my left eye since march/april. I finally was able to get a referral to the eye doctor and went on tuesday. I went through all the eye tests they do on everyone and when they were looking she looked for a long long long time. I figured something was up. I have never had a eye doctor look into my eyes for that long of a period of time. she had another doctor come in and look then showed a student what was going on. I began to cry during this. I was told I had papilledema. I was worried at this point. I was immediately sent over to get a mri which came back normal. I am obese. I am sitting and waiting on a referral to the neurology clinic here where I live. I have not had severe headaches. I have had horrible panic attacks for a good year now, kept telling my doctor that I feel like something is physically wrong with me, that my body is reacting to something that it was not just mental, but she put me on prozac anyways. I have had hypertension since I was 17 but its been under control ever since. I am suppose to get a LP here in the next week or so whenever I can get into the neurology doctor. I am curious if its possible to have this without the headaches? I also have been having horrible ear pain for months now on and off. thanks
First thing to do is, calm down. panic is going to get you nowhere and just make you feel sick. Try and approach this by stages.
So, you have had the MRI and the next step is the lp. ( more about that in a min).
It does sound like it is possible that you do have IIH but it could be a secondary case of it. By that I mean, your weight could be a significant cause of it.And, maybe, just maybe, when you lose the weight your symptoms may recede.
The initials IIH stand for ,Idiopathic Intracranial Hypertension.
I means, of no know origin.I means with in the brain. The H, for raised cerebrospinal fluid, not blood pressure as many think.
Some of us, know why we have it , others, like myself, no idea.
When you say an eye dr do you mean a Ophthalmologist? Because that is the kind you need. An ordinary optician will not do.
They found paps. Paps is short for papilledema, swelling of the optic nerve and a symptom of IIH, as is, ear problems
It can range from hearing, a constant ringing, to hearing your heart beat when you put your head on the pillow, to a swooshing noise.A lot of us also have ear aches that are not real. Well, the pain is but it is not an infection but more the pressure with in the brain putting pressure on the inside of the ear.
If, after the lp they think you do have IIh, they will start you on a medication called Diomax, which will help this symptom a lot.
Yes, there are some who do not suffer the headaches that most of us do. I call them LUCKY! I would not wish this hd on any one, so its great that you are not having them.
I would agree that, maybe , your panic attacks could be related or as a response to IIH. Lots of us, have some many things wrong with us till we get to diagnosed. Then things start to fall in to place.
When you have a date for your lp, come back to us and we can give you some tips and the benefit of our experience. They are not as bad as you may think. Some, like my last one, was a breeze. Really!
We are here for you and will do all we can to help and support you. Read some older posts, they are full of info .It also helps you to get your head around all this. There is a lot to take in but go slowly, step by step, ok? Cath.
Be glad you don't have headaches! The ear pain is/can be part of high pressure symptoms. Some people don't get headaches.
When you get your LP you can be sedated if you want. For some people they don't hurt at all, for others they are the worst. Make sure they do it under fluroscopy (live x-ray) so they can see what the are doing and only have to puncture once.
I dont remember a thing.. a little sore after, but I was fine.
Glad everything worked out! Let us know how it goes- Laura
The facility that did my LP required that I had someone to drive me home, and they even wanted my boyfriend with me for 24 hours after the procedure. I don't know if this was just a precaution taken by this facility, or if this is common practice.
It is best to be as flat as possible for as long as possible after your LP, so if you can have someone with you to bring you beverages (lots of caffeine and lots of water) and food (if you have an appetite), it would be a good idea. I was told to only get up to go to the bathroom -- nothing else, so my boyfriend was a life-saver for me that day.
Good luck to you!
~mg
When my mom heard they were doing an LP on me she started flipping out, and after hearing the not so good stories on here about it, all I can say is, my neuro in Malaysia must have been good! I pray that you get a good person also to do yours. Best wishes! It will be worth it afterwards to know what the OP (opening pressure is). And chances are it will at least temporarily lessen your symptoms.
~Elisa