Aa
Fluctuations in pressure with pseudotumer cerebri
Hi,
I was diagnosed with ptc a year ago. Since then I have been taking Diamox & Lasix to bring down my pressure. I am seeing a neuro-opthamothogist for this. He says my pressure seems to be staying down more than up from what he can tell by looking in my eyes 1x every 2 months. He tried to drop 1 Diamox per day but as soon as the next day my headaches were more severe. I tried for 2wks. but couldn't take the pain so he upped me again. I may do pretty well and then I'll have many days in a row with that horrible pressure in my head then it will get better again. My concern at this moment is I am currently been having one of those runs but this time I am having more severe pain. When I lean my haed back the pain is worse, the area around my occipatal bone seems to be the place where if I press will send pain up to the top of my head. When I turn my head to the left or right that area seems to send it to the sides of my head. Could my pressure be fluctuating more than what he thinks and is it common to do better for a while then go backwards. I have recently lost 60 lbs. and he said that should have made a differnce but has not given him what he thought it would. I did take lupron in 92' and have found some info. linking this as a possible link. I'm just a little concerned by this recent increase in pain. Any comment would be helpful.
Thank You.
I was diagnosed with ptc a year ago. Since then I have been taking Diamox & Lasix to bring down my pressure. I am seeing a neuro-opthamothogist for this. He says my pressure seems to be staying down more than up from what he can tell by looking in my eyes 1x every 2 months. He tried to drop 1 Diamox per day but as soon as the next day my headaches were more severe. I tried for 2wks. but couldn't take the pain so he upped me again. I may do pretty well and then I'll have many days in a row with that horrible pressure in my head then it will get better again. My concern at this moment is I am currently been having one of those runs but this time I am having more severe pain. When I lean my haed back the pain is worse, the area around my occipatal bone seems to be the place where if I press will send pain up to the top of my head. When I turn my head to the left or right that area seems to send it to the sides of my head. Could my pressure be fluctuating more than what he thinks and is it common to do better for a while then go backwards. I have recently lost 60 lbs. and he said that should have made a differnce but has not given him what he thought it would. I did take lupron in 92' and have found some info. linking this as a possible link. I'm just a little concerned by this recent increase in pain. Any comment would be helpful.
Thank You.
Thank you Dr. Glen for your info. After I posted my question & the holiday was over I called my Dr. After making it thru that weekend which was my worst pain yet, I was tols to up my Diamox to 4 a day again & call if it got worse. I was told I couldn't be seen for 6 more days. The pressure was relieved slightly after about 3 days but by no means good. The pain in the back of my head was unreal & I had pressure in my ears like when you go down a hill and need popped! I went to see him today and my visual field was the worst one yet and the last 5 or 6 have been fairly good. He did freaked wanting me to have a spinal tap right away, I was alone and live an 1hr & 1/2 away. I'm going in 2 days, which by the way is my first tap so I'm a little nervous since he gave me no info. I will be better off asking the doctor who will do I guess! I was very upset with him, I think when I called last week he thought I was just having worse headaches & didn't take it serious and now he's having a fit that it's changed so quickly. I don't know what to expect next but I'm told that their are only 2 neuro-opth. in Pittsburgh so I'm not sure what my options would be? If anyone has any suggestions or comments I'm open for them. I'm like eveyone else curious!!!!
Dear Beth,
Sorry to hear about your problems with PTC. I was diagnosed with PTC about 18 months ago (more correctly I had to diagnose myself since the specialists I had seen refused to believe I could have PTC). I ran the typical gamut of medications and multiple lumbar punctures, ending up with a lumboperitoneal shunt earlier this year. First, let me say that for the most part the medical literature is grossly inadequate in guiding physicians in managing care for patients with PTC. In addition, many physicians are poorly trained to deal with this condition and, as such, this reflects in the care the patients receive.
Your intracranial pressure may be fluctuating a great deal more than your neuroophthalmologist believes. Additionally, weight loss is not the great panacea that many physicians believe it is. While some patients with PTC do improve after losing weight, many do not. The increase in pain may be a sign of increasing CSF pressure and should be reported to your physician.
Sorry to hear about your problems with PTC. I was diagnosed with PTC about 18 months ago (more correctly I had to diagnose myself since the specialists I had seen refused to believe I could have PTC). I ran the typical gamut of medications and multiple lumbar punctures, ending up with a lumboperitoneal shunt earlier this year. First, let me say that for the most part the medical literature is grossly inadequate in guiding physicians in managing care for patients with PTC. In addition, many physicians are poorly trained to deal with this condition and, as such, this reflects in the care the patients receive.
Your intracranial pressure may be fluctuating a great deal more than your neuroophthalmologist believes. Additionally, weight loss is not the great panacea that many physicians believe it is. While some patients with PTC do improve after losing weight, many do not. The increase in pain may be a sign of increasing CSF pressure and should be reported to your physician.
Dear Beth:
Sorry to hear about the symptoms your having with pseudotumor cerebri. As you know, the only "cure" for this treatment is usually loss of weight. The amount of weight is usually patient dependent and some patients need to loose more than others. It sounds like you have lost some weight with little help. We have found, like others, that weight loss usually helps. There are some patients who, for some reason do not respond to weight loss and even some who do not respond to the usual medications. Yes, pressure can fluctuate and we have some patients whose headache will reappear when things begin to esculate. Our worry is loss of vision and if the papilloedema is increasing then other measures will have to be considered. As with an illness, especially the chronic illnesses, there are peaks and valleys. As long as you can tolerate the occasional pain and your vision is not affected (e.g. papilloedema) then the worrisome part of this disease is lessened. As your opthalmologist is following you closely, this is good. I would let him/her know about the increasing pain.
Sincerely,
CCF Neuro MD
Sorry to hear about the symptoms your having with pseudotumor cerebri. As you know, the only "cure" for this treatment is usually loss of weight. The amount of weight is usually patient dependent and some patients need to loose more than others. It sounds like you have lost some weight with little help. We have found, like others, that weight loss usually helps. There are some patients who, for some reason do not respond to weight loss and even some who do not respond to the usual medications. Yes, pressure can fluctuate and we have some patients whose headache will reappear when things begin to esculate. Our worry is loss of vision and if the papilloedema is increasing then other measures will have to be considered. As with an illness, especially the chronic illnesses, there are peaks and valleys. As long as you can tolerate the occasional pain and your vision is not affected (e.g. papilloedema) then the worrisome part of this disease is lessened. As your opthalmologist is following you closely, this is good. I would let him/her know about the increasing pain.
Sincerely,
CCF Neuro MD
You are reading content posted in the Neurology Forum
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
