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BsMom
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Oxygen? Lithium?
« on: Sep 22nd, 2003, 2:39pm »
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Hello all!  I have a 12 year old son who has been going through REALLY ROUGH 55 days!  It all started one night with a DIRE headache and vomiting all night.  Ultimately, he was diagnosed with Viral Meningitis as a result of a spinal tap.  He was hospitalized for 6 days.  And, he has been having these headaches, vomiting, nausea, feeling like crud EVERY DAY since that time.  
 
He has had several ER visits, numerous doctor visits, as well as another hospital stay that lasted for 9 days!  He's had a total of 2 Catscans, 1 MRS, 1 Upper GI, 3 Spinal Taps, a zillion blood tests and a variety of doctors trying to find the cause.  But, still, the doctors cannot find what is causing the "sickness".  He has not been able to start 7th grade yet this year and I know that is rough for him b/c before this illness he was such a fun loving child who loved school and being around his friends.  
 
Well, to make a long story short, today we visited yet another doctor.  This time a neuro surgeon.  After a few minutes in his office, he said he really believes what my son is suffering from is cluster headaches.  He symptoms indicate it:  daily headaches several times a day, nausea, vomiting, blood pressure that rises, heartrate increases, fever, feeling like crud.  He said he would talk to his neurologist and his pediatrician and get their thoughts.  He mentioned that ch's are treated with lithium.  
 
After 55 days of illness, this is the first time anyone has mentioned cluster headaches.  I wonder why?  I mean he has been seen by 3 neurologists.  They concluded that his illness was caused from stress.  His pediatrician even prescribed Prozac to give him energy!  Of course I didn't give it to him.  
 
I just don't understand why it has taken this long for anyone to suggest cluster headaches.  And, I wonder about the treatments.  In reading some of the posts it looks like oxygen is another treatment.  Does anyone have thoughts on the various treatments available.  
 
My son wants to be "normal" again.  It's been a ROUGH 55 days!
 
Any guidance would be greatly appreciated!
 
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Re: Oxygen? Lithium?
« Reply #1 on: Sep 22nd, 2003, 3:00pm »
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Oh man, stories like this break my heart.  It's so hard just being TWELVE, but to add this stuff into the mix?  Well, it's just not fair.  My heart goes out to you and your son.
 
Lithium is used by a number of sufferers here, but it's usually combined with Verapamil.  They work together as a preventative.  I don't know, though, if I'd give that to my child.  To my husband, yes, but to a child?  I'd sure go the oxygen route, it's SO much safer when it comes to side effects.  
 
You should take the cluster quiz at the left there.  Vomiting is not real common with clusters unless it's a reaction to meds.  But it could be that that is his little body's reaction to the violent pain though, too.  It's so hard to tell.  Poor guy, no wonder he feels like crud. Sad  
 
All of the other symptoms do fall into the cluster category - the increased heartrate, the temp spike, etc. all typical.  Are they waking him in the night?  is he on ANY meds right now?
 
Our OUCH website has some resources for kids.... here's the link:  
 
http://www.clusterheadaches.org/resources/kids.htm
 
Read everything you can, but be a watchdog for him with regards to the meds these doctors try to throw at him.  If he's a small child, weight wise, make sure you adjust dosage accordingly.  In other words, if he's less than adult size, he doesn't need as much of the med - check with doc on that.  Good for you for not giving him Prozac!!  You're his best defense, Mom - learn all you can and please, feel free to keep asking questions here.  We may not have answers to everything, but we usually can point you in the right direction.
 
Please keep in touch, ok?  And...hang in there.  
 
hugs,
Margi
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Re: Oxygen? Lithium?
« Reply #2 on: Sep 22nd, 2003, 4:10pm »
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Thanks for the reply.  Yes, they do wake him at around 2 a.m.'ish.  Luckily not every night, but probably 3 out of the 7 he crawls into my room and wakes me up b/c he is crying and puking and just wants the pain to stop.  And, of course, being a mom it just breaks my heart not to be able to do anything for him.  So, I am so hopeful that the neurologists and pediatrician will all concur that this is clusters and will at least try to treat him because nothing else has worked and none of the test have shown anything.  My son and I both feel that his old pediatrcian and some of the neorologists treat us like we are crazy or that he is faking this whole sickness for what reason I have no idea or that stress is the cause.  I know these things are not true b/c I've tried everything to get him out of the house with bribes of things he used to LOVE to do and he just doesn't want to do anything.  And, just like some of the posts said, he hasn't had any sleep b/c of those darn headaches!  Well, here's to hope for some treatment for him!  I will take the quiz too.  Thanks!
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Re: Oxygen? Lithium?
« Reply #3 on: Sep 22nd, 2003, 4:37pm »
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Sad  poor lil guy.  
 
You COULD try giving him benadryl or dramamine to help him sleep through the night - that helps a lot of folks here and they're both available without prescription.  Again, adjust the dose according to his weight.
 
And, I hear you when you talk about trying to bribe him out of the house, to confirm to yourself that this pain is real that he's feeling.  I'd probably do that too, but I would also doubt that a kid that age could fake this kind of pain.  Again, the vomitting is out of character but the dramamine would definately help with that.  
 
Another thing you could try with him is the Water treatment (water x 3 button on the left).  Make sure the water is cold.  Warning with this treatment is to only try this if you're sure there's no underlying kidney or liver problem.  If he's sick to his stomach a lot, this will help to rehydrate him, as well.  Sometimes doing the water treatment can break a cycle, because it changes the balance of salts in the system.  Whatever you do though, don't do the water program if he does go on lithium.  The water thing broke 2 of my hubby's cycles for him and, although it doesn't work anymore, it does help keep the pain down to a dull roar sometimes in the early stages - but that's because it's always ice cold.  It almost numbs the roof of his mouth - where the sinuses come close.  Ice is great for pain relief for a lot of people.
 
One last thing, keep pushing docs here.  Get him some oxygen, a.s.a.p!!  It really is the best/most popular abortive.    Sometimes we supporters have to have really sharp teeth, in order to get our sufferers the attention they need.  We don't "do" waiting lists around here.  Clusters require urgent care.
 
 
 
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Re: Oxygen? Lithium?
« Reply #4 on: Sep 22nd, 2003, 9:38pm »
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Margi gave you about the best advice so I won't repeat what she said...I also had meningitis though and I can imagine it can bring on Cluster Headaches... The pain I had with the meningitis lasted a long time as well as the inflamation to my brain... The doctor prescribed Celebrex for inflamation.  It took 6 weeks for the heavy symptoms to go away and it took me about 2 years to recover thoroughly.  If he has started having clusters you need to have the doc that diagnosed tell you who to bring him to... My daughter shows signs of some form of headache and her dad is a CH sufferer.  We are hoping it isnt CH.  We took her to a Neuro that wasted our time.  Fight for your son and let us know if there is anything we can do for you... Take information from this forum if you need to.  Good luck and God bless I will pray for your little guy.  love to you Ree
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Re: Oxygen? Lithium?
« Reply #5 on: Sep 25th, 2003, 8:18am »
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I concur.  with Margi & Rea.  And I do very much understand your frustrations with the doctors & doctor visits.  My Cammie has been suffering for over a year now and we still are only at a "prelimanary diagnosis" of CH.  It would seem they are not gods afterall.  
 
I would like to add to Margi suggestion regarding Benedryl or other Anti Histamine (even the knock off Benehist).  (2) tablets contain the same amount of histamine that is the active ingrediant in Somanex & other sleep aids w/o the fluff & high price.  Also, one of our Neuros has started Camie on an Antihistamine regime (Periactin, in fairly large dose) twice a day.  The idea is that the Periactin actually resides in the receptor sites for Histamine which is the theorectically the reaction to the headache resulting in pain (I believe I understand this correctly).  The downside is that it also blocks seritonin (sp?).  However, since starting this therapy...Camie's severity is lessened which means he is not vomiting which means I can give him the Bextra (which has had marginal results if any at all).  I just now got the O2 back into the house.  But the O2 was also very effective during our last cycle.
 
As far as the Lithium (or any psychotropic drugs), I am so far avoiding them.  While Cammie isn't pain free, he is managable right now.  However, you should know the Periactin does affect his personality (blocking seritonin (again sp?) is a downer).
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Re: Oxygen? Lithium?
« Reply #6 on: Oct 7th, 2003, 4:46pm »
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BsMom... Cry nothing worse than reading about a child having to endure this kind of pain...you have some great advice here....PF vibes to your brave little man....keep us posted on how he's doing..
 
Cathy  Cry
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Re: Oxygen? Lithium?
« Reply #7 on: Oct 7th, 2003, 10:37pm »
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Cry
Wow....that is a real heartbreaker.    Such a shame. It's bad enough that we adults endure this, but so damn unfair that a child has to suffer.
 
I just don't know if I could handle that.  
 
Stay on top of those docs, and make sure they take care of that precious child.  You already got some good advice from the above posts.  Settle for nothing but the best for your son.
 
Please keep us updated on his condition.  There is great support and much love on this site.  Someone always here.......so please keep posting and let us know if there is anything we can do.
 
Lotz of love and pf vibes coming your way........
 
Jean
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Re: Oxygen? Lithium? UPDATE on Brandon
« Reply #8 on: Dec 22nd, 2003, 11:35pm »
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Great News!   Smiley  After convincing the neurologist to PLEASE  try and treat Brandon for cluster headaches, they prescribed him a daily oxygen treatment at home along with the prescription Verapamil, his headaches went away after a couple of weeks of treatment.  He has been back at school for 4 weeks now and is slowly catching up with no sign of the headaches!  To this day, I truly believe they were cluster headaches and  hopefully, they will stay gone for a very, very long time.  But, should they return, at least there is hope for treatment as the oxygen and the Verapamil worked wonders for him.  His neurologist is still not convinced they were cluster headaches.  When I ask him why not, he says b/c if it was clusters, it would have been Brandon's first "attack" and for it to have lasted well over 2 months would be very unusual.  So, then I got to thinking back over the last couple of years, wondering if Brandon had a previous "cluster headache" attack that could have been his first cluster headaches.  There was a time a couple of years ago where he laid on the floor of his room vomiting and being sick with head pain. At the time we just thought he had a virus and it was making him sick, but in hindsight,  I guess it could have been a cluster attack?  He was better in about a week.  So, does anyone out there have any insight into this?  
 
Based on what I've said about Brandon's condition/history, could he in deed have clusters?  From what I've read, if it is clusters, won't he always have them?
 
Thanks for your responses.  Thanks to everyone for their thoughts and prayers during the Brandon's illness.  
 
Amy
« Last Edit: Dec 22nd, 2003, 11:38pm by BsMom » IP Logged
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Re: Oxygen? Lithium?
« Reply #9 on: Feb 12th, 2004, 2:44pm »
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Hello,
My heart goes out to your son. I am a male of 32 years of age and began having cluster headaches at the age of thirteen. It is even harder for children to cope with this illness  
because of their level of activness and their capability of not understanding what is happening to them.  I was diagnosed at the age of 31 with cluster headaches. So your children are on a much faster path of help than I had. That is the good thing. However, you as parents need to educate yourselfs as much as possible for the more you know the less you will have to depend on your physicians making a bad move in your childs therapy. The one thing you should know, never get to excited about long periods of time without headaches, for Clusters come and than are followed by a period of remision, it is during these times you may set yourself up for deep depression for when they return. I have not heard of many CH sufferers actually curing their CH.  You can make the headaches easier to cope with with proper treatments however you need to investigate the amount of experiance your physician has in the area of Headache. Neuro's often claim of this knowledge but however I have found out the hardway that this is not true. Ask your physicians questions like, Have they recieved training in the area of headache, how many patients have they worked with that have suffered from ch, ect.  Question everything!!!!!!!  Adults with ch are probably easier to medicate than children because adults can handle the heavier meds that children can not. I am currently Taking Verapimil 160 mg a day, not much relief may have to up the dosage. I also am taking depakote 500 mg a day, this is deffinately not working. I also take Imitrex  
Injection for abortive measures only, this works every time I have one that cannot be stop any other way. However I am not sure if your child can use Imitrex for it is a strong medicine that has side effects. Imitrex is also available in pill form. I wish your  and everones child well through their struggle of life, this will be the most painfull experiance they will ever have to deal with. Did you know that a cluster headache produces pain equivilant to having a limb amputated without any pain medicines? God bless your children.
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Re: Oxygen? Lithium?
« Reply #10 on: Feb 12th, 2004, 2:53pm »
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Bsmom,
When brandon has this head pain does he have tears streaming out of  one of his eyes, does his pain appear on one side of his head and cosistantly on one or the other side.
does he get nasal congestion or nasal dripage?
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Re: Oxygen? Lithium?
« Reply #11 on: Feb 12th, 2004, 2:57pm »
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Yes, the pain would be on one side or the other and his eye would tear.
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Re: Oxygen? Lithium?
« Reply #12 on: Feb 12th, 2004, 3:51pm »
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It deffinately sounds like cluster headaches to me and sorry but the chances of him ever completely preventing the headaches are slim.  You need to be more agressive with his doctor and have him explore more into the possibility of CH. If  
he or she won't, find someone else. Keep searchin for a doctor that will help you. Your chances of brandon fighting this thing is only as good as the docter whos helping him fight it. Becareful of lithium it is a very Heavy drug, and for some people has changed their lifes to the worse.  Oxygen has been a highly recomended therapy among fellow cluster heads. I have tried it and it does work, sometimes. This seems to be the case with most meds sometimes it works sometimes it don't.  The sooner they rule out any other possibilities the better, that way they can concentrate on his clusters, if infact he has them, sure sounds like it to me though, I have been suffering for 19 years now so I know what a cluster headache is. Every symptom you described is a cluster sympton, but does not rule out anything. Hugs for brandon, tell him he is special and that this will make him a strong man for the rest of his life. Keep asking questions bsmom , that is your best defense! good luck, Adam
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