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 have read so many of your posts late into the night as I sit at my computer doing research for my son who was diagnosed with PTC 11/09 after 6 months of eye pain, constant headaches, and difficulty reading.He is 19, a college freshman, and had to withdraw from school due to the inability to read/study with the deep aching eye pain. Thankfully,he has never had papilledema or vision loss, but this likely delayed the diagnosis. Many doctors and specialists later, an opening pressure of 320 on LP confirmed the diagnosis. The cause? baseball collision in highschool or 12 weeks of Accutane.Nobody knows. He is currently on 3000mg. of Diamox, 20mg.Lasix, and 50mg. Indocin at bedtime. Still cannot read for more than 15 minutes. He played every sport in high school, is very fit and athletic, and according to all his doctors... is a very rare patient.
I want to thank you all for your help and encouragement over the last 4 months. I feel like you have become my friends. TJ, I am so happy for you. You give me hope.Judie, I hope your college daughter is still doing well after her VP shunt.I pray for you all... I have no idea what is in our future. I so want my son to have his life back. He is a classical pianist and at least he can still fill our home with his music as that does not hurt his head!!!
I want to thank you all for your help and encouragement over the last 4 months. I feel like you have become my friends. TJ, I am so happy for you. You give me hope.Judie, I hope your college daughter is still doing well after her VP shunt.I pray for you all... I have no idea what is in our future. I so want my son to have his life back. He is a classical pianist and at least he can still fill our home with his music as that does not hurt his head!!!
Im sorry your son has to suffer with this illness.It so hard to see young people with it. I am an old lady now(49) and have lived. But your son will again. It does take timeand many new directions have to be taken but it will ok.
A few tips for your son regards his eyes. I to have a lot of eye pain but have paps, but these still work.
1)Eye drops for dry eyes. He might not have dry eye even tho it is quite common among Ih people, butit does help a lot.
2) Alternate warm teabags and cold cloth. Take about 15mins to do it.
3)Sunglasses! not only for outside and the sun! I read and do computor work with sunglasses.Also tv if I watch alot. He will have to take breaks when he is reading.Also, large print books but not all of tthem. Some ,I find ,are too bold in black print.
Just a few ideas for him.I hope we will be able to help you bothFeel free to ask any questions or just have a chat.Nice to meet you! Cath
Thank you and bless you.
As far as I am concerned you are high one million mom! I am glad you finally joined. I am sure there are a few others lurking out there. I am glad you found comfort in reading our posts and decided to join.
This is a tough illness, period! Your son is young and needs to find a way to cope with it as who knows how long it will be until they really figure it all out. Not sure how much of my journey you read but I would do it all over again for how I feel know. And yes it is ok to ask who my NS is. Dr. Shafa, UCLA, Ronald Reagan Hospital, Los Angeles. He is GREAT! If you really want to come all the way here send me a message and I'll give you his contact info.
I would also like to extend an offer. I know what your son is struggling with. Like Cath, I am a bit older than your son but enjoyed a great education and fantastic VP level career before my DX. I am also a guy and as you know that is pretty rare..(like I am the only guy here of almost 300 members). My offer is to you and your son. If you would like to learn more about what I have been thru in the last couple years with respect to this illness and just want someone to talk to, I would be happy to talk to you and/or your son on the phone or via email. Just send me a msg if you are interested. If not I am very willing to put my 2 cents in here are DS.
In many ways I feel fortunate that I only have the last half of my life to deal with this crap vs your son staring his whole life in front of him having to deal with this nasty illness. Please let me know if there is anything I can do to help him.
I truly feel for you,
TJ
Just read your post and I am so glad you joined. It really is incredibke the support that caregivers also need. And everyone here is so wonderful - caring and sharing -
As you know from my posts, Caiti is 25, and was in 1st year university when she had to stop her studies. She has lost 2 years and is determined to go back in September. WHile her VP shunt was successful, and she is HA free (yeah!) she continues to have abdominal pain and I think all the bacteria in her intestines was destroyed with all the meds over the years. We have been seeing a General Surgeon, and he is going to do a laparoscopy around her belly button incision to see if there is a small hernia as a result of the VP shunt - apparently this is quite common according to our NS.
It's so weird - Caiti was on the same dosage of Diamox and Lasix as your son is currently on. She was able to stop cold turkey after shunt surgery with no withdrawal pain. She did however go through a tough withdrawal on the pain meds.
How do you stand with respect to an action plan? One of the first things I did was start a journal of all hospital and doctor visits, with my notes, and have kept that handy. I also registered us with the IH Foundation and gave them permission to access Caiti's records related to IIH to furthur their research and financial support.
I'm so glad you felt comfortable enough here to introduce yourself. As a caregiver, I know how exhausting it is to try to be 'up' all the time, and be encouraging. I think I overdo it sometimes, but honestly, sometimes I wish it was me that had all this pain, not her, and I guess I still ask the question -why Caiti??
We'll all get through this - It may take some time, but we will!
Judie
I echo the sentiments already posted - welcome, congratulations for joining and bless you for all that you do and deal with on daily basis when dealing with your son's disease and symptoms. Your reading and joining DS, as other caregivers before you have done, must give your son such an amazing amount of comfort - you may have noted how many of us wrestle with the issue of people not having a realistic idea of what our disease is truly about, but you have immersed yourself in a community of patients - how wonderful! For that, I give YOU a high five! :)
Anyway, as for your son's desire to read and study, I can truly empathize. When I was diagnosed I took off from work (which IS school - I am a teacher) for the entire month of June because I could not read, write or look at a screen (TV or computer) without severe pain. I thought I would lose my mind, but then I remembered something wonderful: AUDIOBOOKS. I don't know if your son has an iPod or some other mp3 device, but he may find some solace in the spoken word.
I, personally, needed ann escape in my time of need, so I downloaded purely fiction, but if your son is looking for some education, you can see if there are any cool courses on iTunes U (http://www.apple.com/education/itunes-u/) - they are all free downloads of college professors' courses from universities all over the place!
Note: It still took me a long time to get through a book (I would often have to re-listen to a passage), but I felt like my brain was working again while my eyes rested.
Best wishes to you and your son!