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...
Hey there!
I've just sort of been hanging out on the boards for the last three months or so, and I thought it was time to say "hi" to everyone. ^_^
I'm a 5 foot, 23 year-old female, married, was hoping to start a family soon, am attending college, and am in poor health (chronic asthma, chronic mild/moderate eczema, food/environmental allergies, and other conditions that my PCP is currently exploring). I have been sick for most of my life, but was only diagnosed with IIH/PTC in August of 2015.
My symptoms for IIH became noticeable in June of 2015, I thought I just had a headache due to a history of migraines, and put off seeing the doctor for a month. I was initially diagnosed with a sinus infection and a tension headache, and sent home. The following week, my eyes began to cross with no explanation; I had a previously scheduled appointment with my allergist, informed her of what was going on, she addressed it as if it was caused by a sinus infection. Two weeks later, I ended up at an optometrist's office for the eye crossing and was immediately sent to another specialist who did further imaging and sent me for an MRI. I was then sent to a neurologist at the beginning of the following week, with no update as to what was happening and was informed that I potentially had IIH and would need a lumbar puncture to confirm. That Thursday, it was confirmed, I was put on 500mg of Diamox, increased to 1500mg within the next month, and sent home. After moving states with my husband, my current neurologist prescribed me Topamax because the side effects of the Diamox were too much to cope with daily. Currently, we are planning a discussion within the next week to figure out the next step before any surgeries since the Topamax does not appear to be working and I am still having blurring/swelling in my optic nerve.
It's been nerve-wrecking reading over all the information, or the lack of information, that there is on IIH, and it's been a struggle for my husband and I now that we're dwindling out of options for treatment that don't involve surgeries.
~Best of luck!
Mmidl
I've just sort of been hanging out on the boards for the last three months or so, and I thought it was time to say "hi" to everyone. ^_^
I'm a 5 foot, 23 year-old female, married, was hoping to start a family soon, am attending college, and am in poor health (chronic asthma, chronic mild/moderate eczema, food/environmental allergies, and other conditions that my PCP is currently exploring). I have been sick for most of my life, but was only diagnosed with IIH/PTC in August of 2015.
My symptoms for IIH became noticeable in June of 2015, I thought I just had a headache due to a history of migraines, and put off seeing the doctor for a month. I was initially diagnosed with a sinus infection and a tension headache, and sent home. The following week, my eyes began to cross with no explanation; I had a previously scheduled appointment with my allergist, informed her of what was going on, she addressed it as if it was caused by a sinus infection. Two weeks later, I ended up at an optometrist's office for the eye crossing and was immediately sent to another specialist who did further imaging and sent me for an MRI. I was then sent to a neurologist at the beginning of the following week, with no update as to what was happening and was informed that I potentially had IIH and would need a lumbar puncture to confirm. That Thursday, it was confirmed, I was put on 500mg of Diamox, increased to 1500mg within the next month, and sent home. After moving states with my husband, my current neurologist prescribed me Topamax because the side effects of the Diamox were too much to cope with daily. Currently, we are planning a discussion within the next week to figure out the next step before any surgeries since the Topamax does not appear to be working and I am still having blurring/swelling in my optic nerve.
It's been nerve-wrecking reading over all the information, or the lack of information, that there is on IIH, and it's been a struggle for my husband and I now that we're dwindling out of options for treatment that don't involve surgeries.
~Best of luck!
Mmidl
Yes, there are not a lot of options for us, but Sophiasmom response where her jaw adjustment caused her to go into remission is an example of different things other than medicine people go into remission.
There are several postings I have read where women who got pregnant went into remission because their PCP was hormonal. My PCP started in June of this Year and the reason they say is because I went into menopause and was overweight (a whopping 30 pounds). "If you lose the weight you may go into remission". Well, I have lost 22 and 8 to go. My symptoms haven't changed much.
Anyway just because the meds are not working does not mean something else won't put you in remission. I say have that baby! :D
PipPipHurray: I've seen that! There is a lot of useful information floating around these kinds of boards that the doctors don't even think to suggest. I will be looking into the Facebook support groups as well, thank you for the suggestion. ^_^
I have been looking into other options, besides medications and surgery, and there just doesn't seem to be a lot of hope to go into remission without going broke in the process because of the surgery/surgeries it would require on top of testing (I'm a full-time college student that is only able to work part-time, and my husband attends school full-time while trying to work full-time, it's a mess, and the financials work out terrible with our insurance).
I have read a few posts to the same effect, so family planning is not completely out of the picture, just delayed a little more until we can figure things out a little.
Here's to hoping! =D
read about UARS:
http://doctorstevenpark.com/sleep-apnea-basics/upper-airway-resistance-syndrome
also research by Barry Krakow on insomnia and sleep disordered breathing:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3490361/
and interesting paper on CFS and IIH:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3899735/
my opinion is that you probably have sleep disordered breathing that has gone undiagnosed, and which is causing your "CFS" which is really an increase in ICP. this has increased to the point you are now diagnosed with IIH. however, the ultimate cause is likely your narrow jaw. it is worth looking into. I wrote a paper on the relationship:
http://www.ncbi.nlm.nih.gov/pubmed/?term=25456788
and have blogged about it on Dr. Park's site:
http://doctorstevenpark.com/obstructive-sleep-apnea-and-intracranial-pressure-part-2
keep in mind that most sleep labs will miss mild sleep apnea. it's a huge problem from my perspective.
I would get your PTC sorted out before trying to get pregnant. I got worse during my last pregnancy, and I've never heard stories of people getting better during pregnancy. pregnancy is a known trigger of PTC. and the last thing you need when you are sick is a squalling baby and not being able to rest when you need to. it's a nightmare. I passed my jaw anatomy on to my son and now he has PTC too.
PTC is associated with Lupus and antiphospholipid syndrome. make sure to get tested for these. treating them may help treat the PTC.
I also have autoimmune issues. strange thing is that whenever I was on CPAP/BiPAP my ANA would go negative. then it came back when I stopped PAP. like the sleep disordered breathing was doing something to trigger the autoimmunity.
I understand about the Insurance and the Money! :( My medical insurance just keeps going up and my deductible is ridiculous! I've already been out almost 3 grand due to this disease and I haven't even met my deductible yet. I thought for sure I would by now.
Yeah, I sounded real hopeful the other day didn't I? LOL not so much today. I get a lot of support here and Sophiasmom has been awesome on answering questions. Facebook is great for emotional support, venting and good ideas. There are meds out there people try I never heard of that helps them take the edge off. I hope your having a good day today!!
Thank you so much for all the articles, it always helps to have more information. Your theory on sleep apnea is quite interesting, and you've published work on this, which is amazing in itself. I look forward to reading more on it!
I was diagnosed with asthma as an infant (less than 1 year old), and have been on a nebulizer/inhaler of some sort since then, so it's possible that one condition was mistaken, or the symptoms of one condition was mistaken, for another.
The CFS was primarily brought on by a bought of the Epstein-Barr Virus, both of which have become chronic conditions. Which contributes to the autoimmune issues. I am currently waiting to be tested for rheumatoid arthritis, but have a low functioning immune system which makes me prone to developing allergies and intolerances as well as have difficulties fighting off infections. My eczema tends to flair up fairly badly and cause whole immune reactions that are difficult to settle down and last for weeks/months (I am currently going through a two week round of oral steroids, antibiotics, two topical steroid creams, and antihistamines on top of my normal regime of allergy medication to quell the flair I am in presently before testing for the RA.).
I do intend to get the IIH/PTC sorted out before pregnancy. It's a personal philosophy of mine that I have to be able to take care of a child to have a child, and if I am on medication/in a financial situation because of this condition that prevents me from doing so, then it's better to wait. ^_^
I definitely feel you there. I'm at almost the same amount in the last 6mo because of all the testing, and the fact that my insurance only allows me to get my medications from one pharmacy or else they won't cover any of it.
We all have our days! Lol
My sister always tells me her favorite Winston Churchill quote when I get all dark and gloomy, "If you're going through Hell, keep going." She explained it to me the first time saying, there's gotta be another side, and end to it, but you have to have to keep on going to find it.
I've tried some meds in the past for anxiety, but they just made things worse; everyone has what works for them though.
I hope that your day starts going a little better! =)
mononucleosis does what? causes massive tonsillar hypertrophy. which does what? precipitates obstructive sleep apnea. once it begins, it can be a vicious cycle. because the obstruction leads to suctioning of stomach juices up into your throat which perpetuates the tonsillar inflammation, and the OSA goes on. I believe this is the actual cause of the CFS that can follow mono. it's right in front of their faces but they just don't see it.
when you have abdominal surgery how do you have to sleep afterwards? on your back. and if you don't normally do that, it can precipitate a worsening of your sleep apnea. this can spike your ICP. you might have been prone before, but after having to sleep on your back for awhile you might get into a vicious cycle. because sleep apnea begets more sleep apnea due to the swelling in the throat from stomach juices getting sucked up. so, yes, I think any kind of surgery that lands you sleeping on your back could precipitate OSA and IIH if you are prone.
pregnancy can worsen IIH, so even if you didn't have to go off the Topamax, it could be bad. sorry about your biological clock. mine did the same thing. I didn't know until much later in retrospect that the IIH was trying to come on for years before I had kids. I was OK after #1. but #2 nearly destroyed me. and taking care of two kids is like living in hell when you have IIH. be careful.