Ask the Expert - Hydrocephalus Episode 2: Headaches and Hydrocephalus

[@video198712]

As an adult who was born with Hydrocephalus in 1968 (i'm 56 now) I have many, many headaches over my life. i know the differences between a regular headache and a "shunt headache"). A "normal" headache that everyone gets are a dull ache, take two Tylonol (not Advil or Ipprovin (sp") because the chemical in Advil is a blood thinner, and it goes away and doesn't come back. A bad "Shunt headache" goes away and comes back often very severe. I compare a shunt headache to a bad migraine headache that won't go away and it makes your muscles weak. My currant neaurosurgeon asked me recently "Do u know the difference between the two headaches?" I wanted to smack her, i mean like I said I've had hydrocephalus and shunts all my life of course i know the difference and I have diagnosed myself (successfully I may add) since I was 12 but people or should I say my family never listen to me until it is too late and I am found unconscious because of the pain when I already knew it was the shunt.

[@cindylynnhirsch5692]

This was so amazing to hear that there are others who suffer with headaches daily. I am on my third shunt in 6 months and have had a headache for more than a year. Thanks for sharing.

[@iSkywen]

Hi. Please tell me, what problems did you have with your shunts? What kind of headache do you have? I am on my second shunt in 2 month, but i have headache like a depression or migrane and dont know what will i do - change shunt or treat depression

[@cindylynnhirsch5692]

Инар Керилов we all experience different kinds of headaches. I had overall pressure headaches. My ventricles collapsed on my shunt catheter and it slipped past my ventricles. I had been overdraining and had slit ventricle syndrome.

[@pandey_87_ji]

​@@cindylynnhirsch5692how are you feeling now dear?? R u okay

[@demarkusgivens428]

31 full years of it went all those years only having three surgeries total and two revisions complications came due to a concussion a year ago in turn my shunt got displaced and since it been so long since my revisions they took the catheter from the first and routed it with a second shunt. Which I’ve also got to see in 31 years how far the technology of the shunt came deeming its flow features magnetically adjustable versus the opening of the head again to make an adjustment for fluid flow. Amazing isn’t it.

[@pandey_87_ji]

Make more session like this.. 4 years ago. It's to long duration i think.. Make new one and new question please it's request.. Because being a patient we want more nd more quaries about this.. Because internet have limited information about this😢😢 Please i hope you can read my comment

[@marksawicky4485]

I'm forty and have had mine since I was 3 months old. Amazed of how many other people that suffer from this as well. I have had mine revised several times from just the stent to the valve and from my stomach to the valve, but never the valve. I've been through several doctors and none want to replace the valve due to a cyst that may cause issues. My headaches are so bad now that I literally black/pass out that would resemble a seizure and doctors say it's non shunt related because they've done all their shuntogram, ct, shunt series. I could go on and on. I hear people live with this and are doing better but I also here people doing worse than myself. I just wish there would be easier answers to all this.

[@pandey_87_ji]

I hope you are good now.. r u fine??

[@h0ckeyd]

I was told by a rather arrogant registrar in September that I simply must know the difference between a shunt headache and a normal headache. I often don't. I do know a post-shunting headache....it's rather more like a fever headache but that's about it. I do suffer from headaches an awful lot though.

[@pandey_87_ji]

Before shunt u have headache or not??

[@TinthiaClemant]

I just met with a neurosurgeon. Even though my MRI shows hydrocephalus and my symptoms speak to this disease, the doctor said my symptoms are psychosomatic and that I need a neuropsych evaluation. 😢

[@TinthiaClemant]

@@beauleosparky Thank you. It does help to know that others share my journey. ❤️

[@pandey_87_ji]

​@@TinthiaClemanthow r u now? R u got shunt revision or not?

[@TinthiaClemant]

@@pandey_87_ji I found a neurosurgeon at UMass Medical and I’m almost 100%with my new shunt. 🤩

[@amandaallen9460]

I'm in the middle of day 2 of my worst shunt headache in YEARS!! CT was April 17th and follow up with my Neurosurgeon is on this coming Wednesday morning at 830 at his office..

[@pandey_87_ji]

And what was the reason behind headache ??

[@suzannemcdowell6448]

I was shunted 3-25-2019 I suffer everyday with headaches. I eat asprin daily to get a bit of relief. I gave an excelkent neuro surgeon but not a neurologist.

[@iSkywen]

Hi. Please tell me, what problems did you have with your shunt? What kind of headache do you have? I am on my second shunt in 2 month, but i have headache like a depression or migrane and dont know what will i do - change shunt or treat depression

[@pandey_87_ji]

How r u feeling now??

[@pandey_87_ji]

​@@iSkywenr u fine?

[@larryf9201]

Great Doctor as he did my last surgery (third vent) as now all I have is migraines still on a daily basis but nothing like hydrocephalus headaches. I also agree with medications making headaches worse. I really enjoy this video as I have lived my whole life in this video. So it's so true.

[@pandey_87_ji]

Hope you doing well and good health.. r u okay now?

[@duanejourney5665]

I just got an MRI that showed the swelling, etc. I've been struggling with blurry double vision in one eye, headaches, major change in my walking, concentration is an issue, balance is off (kind of like I'm on a boat sometimes), Stomach issues. I've seen two doctors over the last 8 months or so. Finally and got a Ref for MRI. They are now saying they all think Hyrdocephalus. But I have not got in the Neurologist yet (waiting list). This video is so helpful. I'm very nervous about this whole thing. It's been taking over my life.

[@gingerbread7113]

Same here but Ive been headache free for 6 years now. I take 500mg water pill twice a day. I didnt want a shunt

[@pandey_87_ji]

​@@gingerbread7113water pill?? Who recommended you?? What compostion of medicine you have taken??

[@pandey_87_ji]

8 month without treatment of hydrocephalus?? Are okay buddy??

[@rbcreations2]

Thank you so much for explaining this. I help run Arachnoid Cyst Awareness. Fenestration of the cyst or shunt placement are the treatments available when the AC becomes problematic and backs up the CSF in the brain. There are a lot of NLs who will prescribe Diamox for long term use because the NS will see the patient getting better with medication. It doesn't help that outdated medical textbooks say ACs are incidental findings and do not cause symptoms. I've been helping people for 20 years now and have seen Diamox used for long term treatment too many times. Thanks again, Royalyn Hayes

[@pandey_87_ji]

Is diamox safe for long time uses??

[@reanmacchabee4151]

Need for operation?

[@marissarivera7962]

I’ve had a shunt since I was about 3 but then it broke around the time I was 6 or 7. I was having seizures before my shunt was put in. I am 18 now so I’ve had mine for over 11 years.

[@curtyowellmedicaladventures]

Do you know if there is a correlation between High ICP being caused by lower Barometric Pressures. I am a weather geek, and some of my weather friends jokingly call me "The Human Barometer", So I'm interested to get your take on the matter.

[@SagittariusQueen]

I got my first vp shunt at birth, 2nd when I was I was a few days old because of a staff infection. 3rd shunt was 13, I am now 32. I'm having a headache right now. I've been in bed resting all day. I love lavender oil. It really does help me. I hate that I'm out of it.

[@tinahawkins3261]

I was told that if they took off the water and put in a shunt that I would be worse off because I was born with it and my body has adjusted to it. Now my question is that true or do I need to get a different option?

[@krystalwesley7043]

Diamox is a short term meds I did that for a long time.

[@pandey_87_ji]

Any side effect??

[@alexlegrove8184]

Had my second shunt since i was 7,I'm due for another

[@dacodagordy3894]

I take Nortriptyline every night before I go to bed and I Do have hydrocephalus I’m 19 years old I take that Medication for my migraines and headaches

[@travisgardner4091]

And does it work?

[@pallavisreetambraparni6995]

Does it work? I also have hydrocephalus. I was first diagnosed with it when I was 12. I had a vpshunt placed and it worked for 27 years and then it broke and I had to have two brain surgeries to have it replaced at the age of 39. After two brain surgeries in 2016, I am battling with debilitating headaches and have been placed on topiramate and menitine. Both have worked for a few years and now lost effect. Now I am on a new medication and it seams to be okay.

[@pandey_87_ji]

Doctor prescribed this??

[@bronx22baring20]

My son has a congenital hydrocephalus,he has shunt also, is it normal that sometimes he seizures when he is sick like fever or stomach ache?

[@adeluca6186]

Hello, I’m male 39 years old diagnosed with Aqueductal stenosis I almost get surgery two months ago. But my third dr opinion said no to have the surgery because I would not respond good. Any advice from you guys, I suffer with headaches every day but neurosurgeon said could be migraine

[@pandey_87_ji]

And how are you now?? Are okay?

[@gingerbread7113]

I was diagnosed at 38. I tske 500mg water pill daily.

[@pandey_87_ji]

Which water pill u taking about buddy??

[@gingerbread7113]

@@pandey_87_ji Acetazolamide

[@gingerbread7113]

@@pandey_87_ji Acetazolamide

[@joycecorwell848]

So that just a hopeless an like women learn to learn to live with it! See wow Dr make there money off of you an don't care of your daily living effort