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Gavin
09-14-2006, 11:28 AM
Hi!
My son is Gavin, shunted for hydrocephalus at 1 week old due to IVHs, has been getting occasional headaches (maybe 5 or 6 since he turned three), I think I am noticing they happen when we have storms passing through. Sometimes he vomits. I don't 'feel' like there's any valve or clog problem, because he's unhappy for a few hours then just fine again. Is this normal? Could he have a migraine? Is it caused by the storm's low pressure? Should I call the NS? Does tylenol help? Any other med help?
:confused:
Gavin's mom (Jen)




LIZARD
09-14-2006, 11:38 AM
Hey, Jen. :)

Yep, that's exactly what it is. Very normal; no need to call the nsg. The shunt acts like a barometer, and when there is a wild pressure change (or even a small one, depending on the individual patient's sensitivity), the result is often sudden, severe headache, with or without vomitting. I had them for years and now I get simple partial seizures from them. Give me the headaches any day. :rolleyes: :o

My experience is that Tylenol does absolutely nothing. I don't take it for any kind of pain anymore, just fever (for which it's the best stuff in the house). The best thing to do is to have him lie down on his shunt side for about an hour or so. This helps to equalize the gravity and level the pressure.


LIZARD, comin' up on 40 years ( :eek: ) of living with hydro

kathleenandjoe
09-14-2006, 12:07 PM
Because it is new, and we do not know your son as good as you . . . I would call the NS just to get checked and error on the side of caution.

Plus it might put your mommy heart a little more at ease. There are many NSs that do not believe in the whole weather-related shunt problems. Most do not experience this so there is little support for it.

I am absolutely not saying it doesn't exist though!

I would call if it were Becca - especially to the point of vomitting.

Hugs,
Kathleen

LIZARD
09-14-2006, 12:21 PM
There are many NSs that do not believe in the whole weather-related shunt problems. Most do not experience this so there is little support for it.

I am absolutely not saying it doesn't exist though!

I gotta tell ya...I am so glad my nsg isn't one of these, but this attitude really ticks me off. I think it's actually fair to say that most of us have some reaction to the change in pressure, although it depends largely on the individual person, as well as type and severity of the hydro.

Kathleen is right; call the nsg if you think it will reassure you, but if it stops once the weather has passed, that's likely all it is.


LIZARD :)

Gavin
09-14-2006, 03:24 PM
I'll see how he feels in the morning. He seems fine now, and it is raining. This is all so confusing, lol! Especially trying to get a three year old to tell me how he truly feels! :rolleyes:
How would you describe a weather related headache, Liz? I *think* he was trying to tell me it hurt in the center of his forhead....
Jen

LIZARD
09-14-2006, 05:39 PM
I'll see how he feels in the morning. He seems fine now, and it is raining. This is all so confusing, lol! Especially trying to get a three year old to tell me how he truly feels! :rolleyes:
How would you describe a weather related headache, Liz? I *think* he was trying to tell me it hurt in the center of his forhead....
Jen

It can vary a lot. I used to have anything from forehead pain to a sinus-like pain or pain behind the eyes, to a lower back pain to a localized, dull pain in the valve itself. I do occasionally still get the valve pain. In the case of severe pressure change, I wouldn't be able to stand up for long. Lying down helped a lot.

I can relate to your frustration over not knowing what's going on inside his head, too. My 12 yo son has Chiari and autism, and if he had head or neck pain, it would be hard to know unless it was really severe, I think. :(


I hope this helps some. :)

LIZARD :)

Jennifer
09-14-2006, 08:53 PM
Hey

Thanks for writing me, I would call the neurosurgeon, just to make sure he doesn't need a CT scan or anything.

suecr
09-14-2006, 09:35 PM
Hayley often is affected by storms and altitude. She is our little barometer. Gets cranky, sometimes lethargic and emesis, then better. Her NS and others I have talked to have seen, and agree with this effect. The last time she was in the ER, all the nurses said whenever there is a full moon, they get a lot of shunt failures as well. All these forces affect hydraulics, the most powerful force on earth...

MegNJaxMom
09-15-2006, 06:58 AM
I would agree with the "stormers". Megs does that too. She is the crabbiest child when a storm (little or big) is approaching. She is 2, so I also know how you feel about wanting to know what they are feeling and getting no where! Right now if I ask Megan if she has an ouchy she always points to her stomach, even if she just fell and bonked her knee or head, or or or! I would, though, call this time just to make sure... Our ns assured me that lots of his patients see the same storm reaction. Good luck, and I hope he is feeling better after the rain.

MarghanMom
09-17-2006, 09:37 PM
Storms do it for Marijke, too. Summer time is the worst, as our part of Texas has near daily afternoon thunder showers in the summer. She gets head-achey and her behavior becomes rather erratic (largely, I suspect, because of the pain). We just dose her up with motrin and hope for the best. . .

WmM3
09-21-2006, 11:27 PM
Forgive me if anything I post in this reply repeats information from others. For several years I have noticed that my HA activity worsens each fall season as early as August lasting until late november. it also seems to follow barometric pressures both high and low seem to trigger HA activity.

In addition: Last summer on the 4th of July my programmable shunt was actually scrambled when a lighten strike came down very near me. I was not struck directly but the ground strike was so close that it fried the transformers and surrounded me and others near me in a blinding white/yellow flash of light that was simultaneous with the thunder clap. It actaully moved my setting, jamming it between 2 settings. So most assuredly I do know that weather force can have some affect on our shunts; the only question is how much.

BTW--luckily the shunt was able to be reset without replacement though at first it looked like a surgery situation.

MegNJaxMom
09-22-2006, 06:54 AM
WOW! A lightening strike that close to you.... I would have been petrified! That is interesting though, something I had NEVER thought of!

KathiDG
09-22-2006, 08:49 AM
Forgive me if anything I post in this reply repeats information from others. For several years I have noticed that my HA activity worsens each fall season as early as August lasting until late november. it also seems to follow barometric pressures both high and low seem to trigger HA activity.

In addition: Last summer on the 4th of July my programmable shunt was actually scrambled when a lighten strike came down very near me. I was not struck directly but the ground strike was so close that it fried the transformers and surrounded me and others near me in a blinding white/yellow flash of light that was simultaneous with the thunder clap. It actaully moved my setting, jamming it between 2 settings. So most assuredly I do know that weather force can have some affect on our shunts; the only question is how much.

BTW--luckily the shunt was able to be reset without replacement though at first it looked like a surgery situation.

Wow...that's crazy. I just had a programmable put in August 18th. Medtronic Strata. Before now, I never noticed any kind of headache with weather changes, I just had headaches ALL the time. Now, I have practically no headaches, but I do notice I start feeling it some with storms that come in...I know that's all it is because as soon as it passes, I get better. Rather annoying, but as long as it's not an everyday occurance...

Anyone have any headache/shunt issues with SNOWSTORMS? I'm from Wisconsin and kind of leary about the winter coming....

Jennifer
09-22-2006, 09:19 AM
Hey Gavin's mom, I think they maybe normal headaches because I got one at work one day, and told them that I had a shunt and they gave me an extra break and I sat down for a little bit and then it went away. I am 22yrs old and with him being young I might consider calling the ns just to be on the safe side. Anything I can give you advice on let me know.

Gavin
10-24-2006, 12:12 PM
Thank you all for your advice, I swear sometimes I feel like my brain is not big enough to make these decisions! All the emotions get in the way... I wish I had the Hydro!!
After a week or so, I did call the NS. He invited us to visit the ER, I declined, knowing how miserable that is, and I felt certain this was not really an emergency! I just wanted to see him. So, a week or so later, he finally set us up with a Ct scan. Well, about 3 weeks and several irate phone calls later, he finally got in touch with me to comment on the scan. And then, he didn't even have any previous scans on hand to compare with! OMG, I was so PO'd. He then suggested I should just get another done, and bring it to an appointment. Grrr! At this point, about a month has gone by, and the headaches (I am now calling them migraines!) have decreased to about 1 a week. So, I decided to skip the NS, and make an appt with a highly reccomended neurologist in Manhattan (I live in NY). That will be on Nov 7th, I hope he can tell me a good NS to see! I am so done with our current guy, he's such a you know what.
Gavin is actually home from school today, it's cloudy and he woke up at about 5am!! to watch movies! I am in the process of gathering all records, scans, etc (I am such a bad record keeper, I am sure I only have half his scans!). I do have a copy of the most recent scan, and from what I can see (as if I were a neurologist!) his ventricles are alot smaller than they used to be. They used to be pretty big, even when he was just fine. So now, I am beginning to worry about overdrainage, ugh!
Sometimes I wish someone else (like DH! ~yeah right!) could handle the details and let me just concentrate on worrying!!!

RACHEL SHMUEL
10-15-2007, 12:19 AM
Hi!
My son is Gavin, shunted for hydrocephalus at 1 week old due to IVHs, has been getting occasional headaches (maybe 5 or 6 since he turned three), I think I am noticing they happen when we have storms passing through. Sometimes he vomits. I don't 'feel' like there's any valve or clog problem, because he's unhappy for a few hours then just fine again. Is this normal? Could he have a migraine? Is it caused by the storm's low pressure? Should I call the NS? Does tylenol help? Any other med help?
:confused:
Gavin's mom (Jen)

Hi Gavin's mom, my name is rachel and my son just turnd 4 he had his shunt placed when he was a week old and just for the past week he has been having migraines i calld his NS and they sent me to the ER but there were so many people that i didnt end up getting the CT done today but tommorow we are going for the CT and ill know more and maybe able to give u some information stay strong

Ishmad23
10-22-2007, 08:08 PM
My husband had his 4th shunt replaced in August. He's had a shunt since he was 29 years old. He is now 58. The cause of his hydrocephalus is really unknown as it was latent. It may have been caused by a fall. The last shunt was 3 years ago and he bounced back to his regular self in about two months. This time, however, the shunt was replaced a bit higher than the last one on the right side of his head. His vision has improved but he can't really multitask so he can't go back to his high school Math teaching job yet, he also has been experiencing a numb feeling on the left side of his body: the shoulder, arm, thigh, chest and neck. He doesn't feel any pain. Just dull and weak numbness. It hasn't gotten any better as time goes by, it seems to stay the same or become worse. Has anybody experienced any such symptons? If so, what can he do about his numbness? His doctor said that it may be due to brain injury and to be patient. He also suggested physical therapy if it doesn't get any better in a few months. He just doesn't like the feeling. Is this normal? Please advise.

GINIRAE
08-04-2009, 10:06 AM
Hi, my name is Ginger. My husband had a car accident in 2004 which busted his head open. He started stuttering, having severe headaches, ringing in the ears and confusment. This was over a 3 year period so I kept making excuses why he was doing these things (he was tired, excited, stressed etc.)
Finally it got so bad that I made him go to the doctor in 2007. Turns out he had hydrocephlus and needed a shunt. So far, this shunt doesn't seem to be working. He is still having all these same symptoms, some are much worse and he has totally lost his short term memory. Does anyone else suffer with these symptoms. I wonder that he went so long with this being untreated that maybe it caused permanant damage. The NS we are dealing with is not giving us any answers. They've took away my husband's drivers license due to seizures. We had to switch doctor's just to be able to get another CT scan. He hasn't had one in a year 1/2. (not since 1 month after the surgery) Aren't you supposed to have one about every 6 months? Can anyone help us. We are desparate for someone to understand what we are going through. Some of the doctors we have seen, treat us as though we're crazy.
~Ginirae

glittergirl
08-04-2009, 01:34 PM
WOW! I have had a vpshunt for exactly 1 year ago today...EVERYTIME the weather changed esp. storms I get REALLY bad Headaches as well! When the weather is beautiful out & sunny I feel great! I have mentioned this to my NS but nothing was said? I actually was looked at like I was crazy:( I believe that weather DOES have something to do with it-Almost like a arthritis thing?But honestly, as I said it has been a year ago 2day & i have had soooooo many headaches since this shunt was put in???? I am currently thinking of undergoing another surgery to just take out the cyst I have-So i would hopefully have NO shunt again ! For its a REAL Pain in the butt having a shunt inside you for the rest of your life:( goodluck with your son-i hope you find answers 7 if you do on this PLEASE let me know:)


Hi!
My son is Gavin, shunted for hydrocephalus at 1 week old due to IVHs, has been getting occasional headaches (maybe 5 or 6 since he turned three), I think I am noticing they happen when we have storms passing through. Sometimes he vomits. I don't 'feel' like there's any valve or clog problem, because he's unhappy for a few hours then just fine again. Is this normal? Could he have a migraine? Is it caused by the storm's low pressure? Should I call the NS? Does tylenol help? Any other med help?
:confused:
Gavin's mom (Jen)

Rachel Adams
08-05-2009, 02:30 PM
hey Gavins mom
my name is Rachel and i know what your son is going through and no doctors will comment on what he is facingbecause they do not know. if it is not in their books they don't know.
anyway YES i belive teh weather does have an effect on the shut. I get really bad headaches and or my insion hurts when the weather changes. I have a neice that has had a shunt since 1 week old and her mom says she seems to be more fussy with weather changes too.
I have dealt with shunt problem since 1989 so if I can help you out in any way let me know
rachel

Jedp
08-09-2009, 05:38 AM
I had a shunt inserted many years ago...1967! It was revised when I was 13 and still have the same one.
I find that in times of both high and low atmospheric pressure I feel pain around the eyes and sinuses, am lethargic and feel pain sometimes around the shunt area. Also when I am in an aeroplane that is descending very quickly, as when I flew to Kenya and Tenerife, I was sick for the first day of the holiday!
Does anyone else suffer from these 'flying' headaches who have shunts?
Jed

shirl rat
09-26-2009, 08:09 PM
yes every time the pressure in the atmosphere changes your child may feel the effects .i have found that motrin helps some with son but other than that rest is the best thing to go with it.

Kat'smomma
11-05-2009, 10:42 AM
I know this is an old thread but You could have easily been talking about my almost four year old child. She has hydrocephalus and was shunted at about 11 months old. About the age of 2 years old she started getting headaches a couple times a month. Some she would just cry that her head hurt, other she would scream in pain and vomit. Each of these would last a few hours then she was fine. We looked for answers for over a year. Finally after switching doctors (ped's not NS) for a third time we got answers. My daughter was diagnosed with Cyclic vomiting syndrome , We soon were off to the neurologist. She now takes a migraine medicine on a daily basis and her cycles have decreased to 1 or 2 every six months.

grevonsgirl
02-22-2010, 10:22 PM
hi can someone help me out, i was just wondering if my daughter would qualify for ssi, she was born 30wks early and she has hydrocephlus and has had two surgeries. she has a shunt and they are now saying she might out grow that one and have to have surgery again. does anyone know if she will be able to recieve ssi, i have applied and got denied twice, but i am now going to a hearing soon and hoping to win, does anyone out there have any advice i would apprieciate it thanks.