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...
3 years ago I became abruptly, mysteriously ill with symptoms like fatigue, brain fog, feeling of weakness, dizziness, etc. A massive work up was essentially unrevealing. I have been unable to work as an RN due mainly to fatigue and visual symptoms (something called ambient focal disorder). Along the way I was given high dose steroids which did not help. About 1 1/2 years ago I saw a NO for my visual symptoms and a coincidental finding was PTC. An LP showed an OP of 32. I was treated with Diamox which decreased the edema on my optic nerves but some still remained. Last fall I stopped taking birth control pills as well as Imuran (an immunosuppressant I had been given on the theory that I may have an autoimmune disease) and after that my eye exams showed no more papilledema and I was able to wean off Diamox by last winter.
After much thought, my husband and I decided we wanted to have a third child. We do have concerns about managing my chronic fatigue and caring for a new baby but have good family support and figure we can get through it. I became pregnant this summer and found out last week that I had a missed miscarriage and had a d&c 4 days ago. I am disappointed and sad but not devastated. We are fortunate to have two healthy children already and miscarriages are common.
Today is a whole other day, I seem to have had a hormonal type crash and have a cold, and have been quite emotional. Unfortunately I happened to have a follow up appointment with the NO today and she saw +1 edema on my right optic nerve. I told her about the recent pregnancy and associated weight gain (I am about 20 pounds over weight total and had gained about 7 of that during my first trimester - just ate whatever seemed palatable with my nausea!). She told me that our plan would be just for me to lose weight, no meds right now and said I shouldn't be pregnant since I have a 100% chance of having PTC during pregnancy and that she recommends adoption.
I realize that pregnancy is an additional risk factor, but it seems to me that a lot of people are able to do it anyway! I was viewing it as a calculated risk and thought perhaps we'd need to have a perinatologist involved if my PTC gets worse and perhaps I might need medication (hopefully not) or something later in pregnancy.
Does anyone have any experience with this or advice for me? I am just so sad and confused. Perhaps I shouldn't push my luck as I am already fortunate to have two great kids but I do want a third and as we all know, maternal instincts are strong and don't have to be rational...
Thanks.
After much thought, my husband and I decided we wanted to have a third child. We do have concerns about managing my chronic fatigue and caring for a new baby but have good family support and figure we can get through it. I became pregnant this summer and found out last week that I had a missed miscarriage and had a d&c 4 days ago. I am disappointed and sad but not devastated. We are fortunate to have two healthy children already and miscarriages are common.
Today is a whole other day, I seem to have had a hormonal type crash and have a cold, and have been quite emotional. Unfortunately I happened to have a follow up appointment with the NO today and she saw +1 edema on my right optic nerve. I told her about the recent pregnancy and associated weight gain (I am about 20 pounds over weight total and had gained about 7 of that during my first trimester - just ate whatever seemed palatable with my nausea!). She told me that our plan would be just for me to lose weight, no meds right now and said I shouldn't be pregnant since I have a 100% chance of having PTC during pregnancy and that she recommends adoption.
I realize that pregnancy is an additional risk factor, but it seems to me that a lot of people are able to do it anyway! I was viewing it as a calculated risk and thought perhaps we'd need to have a perinatologist involved if my PTC gets worse and perhaps I might need medication (hopefully not) or something later in pregnancy.
Does anyone have any experience with this or advice for me? I am just so sad and confused. Perhaps I shouldn't push my luck as I am already fortunate to have two great kids but I do want a third and as we all know, maternal instincts are strong and don't have to be rational...
Thanks.
however, I think that someone was doing you a favor. I agree. you should not be pregnant. you really are pushing your luck. you are so fortunate to have two healthy children and really, you should stop there. some people on these boards have never had children and their IIH is so bad they need a shunt, and they worry about the same things. you are in a much better position than they are. your papilledema is in remission as long as you keep your weight down and avoid too much female hormones. (birth control pills and pregnancy) others are not so fortunate. you want to be able to be a good mom to the two kids you have. please take care of yourself and focus on your blessings. I know, I have two kids myself and it is hard to take care of them when I am sick. I got sick during my last pregnancy. it has been absolutely horrific, really, being sick having a toddler and an infant and a very unhelpful husband. in the middle of it I discovered my son was autistic and then that he also has IIH.
now, I'm a lot better after jaw surgery. but my main complaint has been brain fog and fatigue. I do not think your IIH is in remission, actually. I think that when you are thinner and off the hormones your pressure is lower and you don't have papilledema, but I think your fatigue is from a pressure that is still too high. you might benefit from exploring the possibility of sleep apnea contributing to your daily symptoms. my son and I both have it.
I am sorry to tell you this but I know you wanted an honest answer. this is just what I think. I am so sorry for this sadness in your life right now. :-(
It would be simpler if IIH could explain all of my symptoms, and it certainly does sound as if it causes similar symptoms for you. When I first became sick 3 years ago, a couple of weeks into my illness I developed vertigo and went to the ED where they did an LP looking for Guillian Barre. The MD did not measure my OP at that time but apparently the CSF dripped out in a normal way. So looking back I assume that I did not have PTC at that time but developed it later. Does that sound right, based on what you know?
What kind of jaw surgery did you have? Was it related to your OSA? I have not had a sleep study done as I score very low on the risk factor assessment. When I was hospitalized back in late 2010 the unit I was on was conducting a study on sleep apnea so I know the night nurse observed me for a short period of time and said I did not have any OSA but of course that is much more informal and brief than a proper study.
I am so sorry to hear how your life has been impacted by this and that your son has it as well. Are you able to work? I miss my job a lot, in some ways that is my biggest loss. And perhaps part of the reason why I am more focused on wanting to expand my family as I am now a stay-at-home-mom by default (which undoubtedly is a blessing, too).
I know I'm not in the best place for decision making at the moment so I am going to give it some time. It's even harder to think with this darn head cold anyway!
this is my story:
http://www.ihaveiih.com/t1168-i-m-doing-much-better-now
what you need to realize is that Sleep Medicine is a BABY specialty. docs think they understand sleep apnea but they do not at all. the Epworth Sleepiness scale is useless. sleep apnea in children was not described until 1976! most sleep centers cannot detect mild OSA, so they think it does not exist. what constitutes risk for OSA has thus been misunderstood.
read this:
http://doctorstevenpark.com/sleep-apnea-basics/upper-airway-resistance-syndrome
I think all of us with IIH go through a period of mourning what life was supposed to be like, because life with IIH is so hard and after watching people on these forums for the last year and a half, it just doesn't seem to ever go back to baseline, even if you get some improvement. at some point you have to look at things realistically and plan for the future. because sometimes things get a lot worse. most of us lose our partners. they can't handle it. could you manage three kids if your husband left and your IIH was worse? I often think that I should never have had children, because with the sensory problems I am left with even though I am fantastically improved, the chaos of kids is very uncomfortable. at the time, I thought that the problem was just Graves disease and that I was better after thyroidectomy and should be fine to have kids. in retrospect, the IIH started with the Graves and just went into remission with the thyroidectomy.