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,
This is my first post on this board, so I will put just a bit of info. I have been having a headache since February, Dr's didn't take me seriously until I started having complete double vision at the beginning of May and my right eye literally stopped being able to move. My first LP opening pressure was 47 (!!) and they brought me down to around ten, and a few days later they did another one and I was at 27 and they brought me down again. In addition to the headache I had already had for months, I then also had a low pressure headache. I was started on 3000 mg of Diamox and am now on 2000mg of Diamox and 50mg of topamax. I was in the hospital for 12 days, but have been home since June 5th.
I see a neuro-ophthalmologist once a week now, and my optic nerve went from being very very swollen and concerning to looking much better and just a little swollen. My field tests are better each week and they are no longer considering putting in a shunt. They do think I might have a little bit of permanent nerve damage in the very bottoms of my eyes though, but hopefully it won't impact my vision too much.
My problem though, is that every time I go to the dr. they are saying that everything is getting better, but my headache is SO MUCH WORSE! I feel worse now then I did in the hospital. I feel like there is more pressure in my head now than there was before, like my head is going to explode. I have a TON of pain behind my ears and I feel like I have a super tight headband on, and then my temples also really hurt. This is the same headache I have been having since February, only worse! It is the same whether I am lying down or standing up, and nothing seems to make it better. All the Dr. says is "give it a few weeks, or its a low pressure headache" or he just ignores it altogether.
Is it common for the headache to get worse? What do you guys do to make it better? I just have no idea what to do right now.
This is my first post on this board, so I will put just a bit of info. I have been having a headache since February, Dr's didn't take me seriously until I started having complete double vision at the beginning of May and my right eye literally stopped being able to move. My first LP opening pressure was 47 (!!) and they brought me down to around ten, and a few days later they did another one and I was at 27 and they brought me down again. In addition to the headache I had already had for months, I then also had a low pressure headache. I was started on 3000 mg of Diamox and am now on 2000mg of Diamox and 50mg of topamax. I was in the hospital for 12 days, but have been home since June 5th.
I see a neuro-ophthalmologist once a week now, and my optic nerve went from being very very swollen and concerning to looking much better and just a little swollen. My field tests are better each week and they are no longer considering putting in a shunt. They do think I might have a little bit of permanent nerve damage in the very bottoms of my eyes though, but hopefully it won't impact my vision too much.
My problem though, is that every time I go to the dr. they are saying that everything is getting better, but my headache is SO MUCH WORSE! I feel worse now then I did in the hospital. I feel like there is more pressure in my head now than there was before, like my head is going to explode. I have a TON of pain behind my ears and I feel like I have a super tight headband on, and then my temples also really hurt. This is the same headache I have been having since February, only worse! It is the same whether I am lying down or standing up, and nothing seems to make it better. All the Dr. says is "give it a few weeks, or its a low pressure headache" or he just ignores it altogether.
Is it common for the headache to get worse? What do you guys do to make it better? I just have no idea what to do right now.
how old are you? do you have any sleep problems?
I am 24 years old. I have insomnia. I have always had trouble falling asleep but it is for sure worse since all of this stuff has happened.
I saw my Dr. today and he has decided to bump up the topamax to 100mg and now they are thinking maybe they should put a shunt in. This is just getting so frustrating, I just want this stupid headache gone.
maybe treating your sleep apnea would help. apneas raise intracranial pressure, and OSA is known to be a cause of IIH and papilledema. the recent research on insomnia points to it being secondary to sleep disordered breathing. most docs have no clue about this.