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Topic: Does this sond right to you?? (Read 583 times) |
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christie
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Does this sond right to you??
« on: Jun 15th, 2003, 8:05am » |
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My 8 yr old daughter suddenly suffered horrific headaches for 3 months at the beginning of the year, Then they stopped. My paed diagnosed cluster headaches and warned us they could come back at any time.
April and May were fine, but now, although she has NO headaches, she is totally exhausted the whole time, though she sleeps well. She has really lost her spark and also complains of tummyaches. Does any of this sound likely to you? I'm at the end of my tether and really worried about her. Many thanks.
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Donna
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Re: Does this sond right to you??
« Reply #1 on: Jun 15th, 2003, 8:19am » |
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First of all, we need to know as much as you can tell us about her headaches......how long each one lasted, any warning signs that one was on its way, what she did during the pain, was she ever awakened from a sound sleep? Things of this nature.
How did the doc determine that they were clusters? Did he prescribe any meds?
I am so sorry that your little one is having this problem A parent feels so helpless and desparate. No child deserves this.
We will help as much as possible, but of course, your doctor is the one to make the final call.
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christie
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Re: Does this sond right to you??
« Reply #2 on: Jun 15th, 2003, 8:37am » |
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thanks Donna - they came on around Xmas with her waking at night 2 or 3 times and screaming . Then they started happening during the day too, and when she had one, she'd go go deathly pale for about an hour. I'd give her paracetomol but it didn't really help , and not a day went by at school for about 6 wks when she'd suffer - many times me going to bring her home. She never vomitted though, and the pain was always on the right side of her head.
The paed did a ct scan and took lots of bloods and put her on beta blockers. She took these for 8 wks but they didn't help and I wasn't happy she was on them really. As they disappeared as suddenly as they came, i 'think' this is where diagnosis came from
Then they stopped quite suddenly at the end of March and she's been fine since. But about 4 wks ago she got VERY tired and seems to have no energy, though she has no headaches at all. She's now getting 3-4 nosebleeds and tummy pains each week too. Does any of thing to cluster headaches at all that you know of? Really appreciate all advice and feedback.
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eyes_afire
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Re: Does this sond right to you??
« Reply #3 on: Jun 15th, 2003, 8:57am » |
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Hi Christie. Your description of the head pain sounds like it MAY be cluster headaches. But, stomach pain and nosebleeds are not primary symptoms of cluster headaches. You need to check with the doc about the stomach pains and nosebleeds.
I think tiredness happens from cluster headaches. But you probably shouldn't assume that the tiredness is associated with the headaches since your daughter hasn't had any recently. Personally, I have a lot of sleep disruptions whether I am actively having CH or not. The pain of cluster headaches is incredibly horrific... worse than you can imagine.
In this situation, you need to be cautious. You should not assume that those other symptoms are related to CH. If you haven't done so, please see the doctor about the stomach, nosebleeds, and tiredness.
--- Steve, one of many...
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Mark C
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Re: Does this sond right to you??
« Reply #4 on: Jun 15th, 2003, 9:07am » |
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Welcome to the board.
I hate this disease....it's just not right for anyone to suffer so much, but for a child...it just makes me sad.
IMHO, its sounds like it could be CH as far as the HA's are concerned. I will attach a good HA diary here so you can keep track of the HA's.
My first suggestion is too find a pediatric neurologist who is familer with such cases....and that is really hard everywhere. Good docs are hard to come by, but there are some good ones. Keep at it. I also would suggest O2 for possible aborting the HA's. Look here for he latest on that. A fine O2 page it is too, good job Steve. It works and is benign for the most part.
As far as the fatigue, I am not sure I can relate it to CH the way you described, but like I said I am not sure. More extensive testing, blood work etc. may be necessary for a correct diagnosis. Nothing is more difficult to handle than a sick child.
Good luck with your baby and I wish you PFDAN's,
Mark
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Kasey4
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Re: Does this sond right to you??
« Reply #5 on: Jun 15th, 2003, 10:38am » |
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 I am so very sorry your child has to go through this. I started at age 13 (took till age 24 before I was diagnosed).
I can't add more to the advice about except to say that "out of cycle" (if she does indeed have clusters as diagnosed) I don't believe it is normal to be tired. I would get her to a specialist asap.
Good Luck!!
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Ree
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Re: Does this sond right to you??
« Reply #6 on: Jun 15th, 2003, 10:59am » |
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I posted to this important topic and it disappeared... I must have hit preview instead of post... anyway
Our daughter same ageish just 9 in May was suffering with several sharp headaches a day... We took her to a neuro that balked at the thought that she might have CH even though my hubby suffers from them and I am a Migraine sufferer... $250 bucks later he said bring her back in a few months. Fired!!!! I might let my ins. co. waste any more cash on that guy... My daughter did not get any headaches through April and May and now June. She also gets tummy aches and nose bleeds. No nose bleed since we turned off the heat in our house...
We have also had my daughter to an endo. she suffers from pre-pubesent (sp??) issues... Could your daughters problem be hormonal??? She could be tired due to meds... did the doc put her on a preventative...? you can email me atree16angel@aol.com or AIM at Ree16Angel good luck ree
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Frank
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Re: Does this sond right to you??
« Reply #7 on: Jun 15th, 2003, 11:14am » |
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Is your daughter taking preventative meds? If so, they might be the cause of her energy being zapped.
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catlind
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Re: Does this sond right to you??
« Reply #8 on: Jun 15th, 2003, 11:37am » |
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Hi Christie,
I'm very sorry to hear of your daughters troubles 
It sure does sound like it could be cluster headaches with the way you describe them. One of the distinguishing characteristics of clusters is that they wake you up from a sound sleep. The other is that you can not sit/lay still.
I don't know about the nosebleeds and tummy pains, but the fatigue could be from many things. It is possible that she is also suffering from mild depression. The horrific intensity of these headaches could easily cause her to be down. I agree with others, and think you should have her checked out for the nosebleeds and tummy pains.
I wish you all the best, stick around and read read read. There is a wealth of information here that can help you both deal with this if it's CH.
Cat
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christie
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Re: Does this sond right to you??
« Reply #9 on: Jun 15th, 2003, 1:07pm » |
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thanks so much for all your replies. In answer to a couple of questions - no she is on no medication now, but during Jan - March she was on propranolol which i'm sure made her tired. But the meds say it wouldn't have long term effects at all.
We are due to see her paed neuro next Monday, but i really don't care much for him!! Problem is that we're on the south coast of England not the US like most of you guys. I thinks our docs are a bit behind yours!!
Neither my husband nor I suffer from any type of Headaches nor Migraine, so I really feel out of my depth.!! Her school have been very supportive but are so concerned about the change in her that they wrote to my GP. Thanks for listening.
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badpunkchick
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Re: Does this sond right to you??
« Reply #10 on: Jun 15th, 2003, 1:23pm » |
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it sounds like your daughter might be a little depressed now... which is typical after going thru something like that... make sure you speak to her doctor about options on how to treat both depression and prevent these beasts from messing with her too much. lithium is a mood leveler and a preventative drug for ch.... i refused to take it cuz i watched my brother take it for years for bi-polar mood disorder... you lose your happy peppy moments and are just mellow all the time... but don't take my advice as pure medical knowlege. discuss it with the doctor and weight the pros and cons for your daughters individual case. keep an eye on her and tell her that you love her everyday.
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Mark C
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Re: Does this sond right to you??
« Reply #11 on: Jun 15th, 2003, 3:04pm » |
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on Jun 15th, 2003, 1:07pm, christie wrote:
Problem is that we're on the south coast of England not the US like most of you guys. I thinks our docs are a bit behind yours!! |
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Hang on there Christie  things might be better than you realize. There are a couple of Brits who are on the leading edge of Clusterheadache research. Look here for information on how to contact the good Dr. Peter Goadsby who just may be the world's leading expert on Clusterheadaches. Here is a link to The Institute of Neurology, UCL
National Hospital for Neurology & Neurosurgery where the good doctor is head of the Department of Headache, Brain Injury & Rehabilitation. Here is one sample of his work....good stuff.
Professor P J Goadsby, BMedSc, MB, BS, MD, PhD, DSc, FRACP, FRCP
England ain' that big!
Good Luck, PFDAN's
Mark
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Big Dan
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Re: Does this sond right to you??
« Reply #12 on: Jun 15th, 2003, 3:24pm » |
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... damn... sorry to hear about the youngin' Christie, hope it's not clusters...
... I'll be prayin' for her...
-Big Dan
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Elaine
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Re: Does this sond right to you??
« Reply #13 on: Jun 15th, 2003, 10:27pm » |
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It doesn't sound right to me. If it was my daughter I would take her to a nero ASP and see what he says. I wouldn't fool around with areg doctor a Nero is what she needs.
Hope you find your answers! That nose bleed worries me! Also the turning white! Just don't sound right!
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katethecelt
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Re: Does this sond right to you??
« Reply #14 on: Jun 15th, 2003, 10:31pm » |
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Christie,
I don't know anything about the med your daughter took during her last cycle. Look for info on rare side effects.
Her exhaustion despite sleeping enough hours indicates she is not getting the right kind of deep, restorative sleep she needs. Make sure and discuss this with her doc. I think she can take Benadryl and/or Dramamine, which may help her sleep better.
One of my sisters had nose bleeds regularly as a child and still does occasionally. No one cause was found, but a humidifier helped as did allergy meds. She had allergy testing done.
Under Message Board Topics, there are message boards for children and supporters. I'm sure you will find even more info and great people to help.
Don't forget the OUCH websites too.
I hate it that your child is suffering and will send many good thoughts and prayers to all of you.
Kate
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christie
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Re: Does this sond right to you??
« Reply #15 on: Jun 17th, 2003, 12:39pm » |
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thanks again for all this, and particularly the Uk info. I'm only about an hour away from there so i've sent them an email.
Still rather confused about whether her current symptoms, though thankfully much better in the past 2 days, are anything to do with clusters. Though it does unfortunately , sound like she did have clusters earlier this year.
Really can't bear the thought of them returning at all, particularly as starts a new school in September. It'd be awful if she had to miss loads again at a new place..
Thanks to you all.
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Charlie
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Re: Does this sond right to you??
« Reply #16 on: Jun 17th, 2003, 9:44pm » |
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Welcome Christie and I'm very sorry to learn of your daughter's troubles.
The description of the headaches sounds like clusters to me. They will wake one out of a sound sleep while very few others, if any, will do that. If it’s clusters, she is not exaggerating the pain. There is said to be none greater.
Perhaps the lethargy is from something else. Many drugs for clusters have that as a side-effect. I used Propranolol as well (also known as Inderal here) to very good effect. It will slow one down a bit and I took it only during attacks. If it's determined that she has clusters, here is Simon Bower's letter that I urge you to print and give to friends and relatives. It's the best we have to help others to understand:
http://www.ouch-uk.org/ch/note_colleagues.cfm
Here is a technique that was very effective when I had my attacks. Younger people seem to grasp things like this better than we most of the time. Good luck and let us know how you make out:
Dr. Wright's Circulatory Technique
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best of luck - Charlie Strand
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BlackDog
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Re: Does this sond right to you??
« Reply #17 on: Jun 17th, 2003, 9:53pm » |
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Christie, all I can offer is to pray for your daughter, your husband and you. Welcome.
Darren
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Callico
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Re: Does this sond right to you??
« Reply #18 on: Jun 18th, 2003, 12:33am » |
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Christie,
I too am concerned about your daughter's current complaints. I think we are all agreed that the HAs sound like clusters, but her current symptoms are not CH related directly. Depression from what she went through could be one answer, but it sounds more like chonic fatigue syndrome. I went through that a couple of years ago, and it was no fun at all. It also sounds somewhat like my brother's allergy to milk. CFS seems to be related to allergies at times. PLEASE don't let anyone stop you from following up on this ASAP! CH doesn't cause permanent physical damage, but allergies do. Mind you, I am not a Dr., so I may be full of mud. Just MHO.
We're praying for her, and for you as well.
Jerry
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KingOfPain
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Re: Does this sond right to you??
« Reply #19 on: Jun 18th, 2003, 12:55am » |
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Sure hope your little one gets over whatever this is soon.
Keep your Dr. informed all the way.
Not much more to add that hasn't already been said by others.
Good luck,
KingOfPain
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MarkHW
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Re: Does this sond right to you??
« Reply #20 on: Jun 18th, 2003, 9:33am » |
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I am sooo sorry.
I am a chronic cluster sufferer and also have migraine (since I was 3). Both my sons have migraine also.
The stomache aches and nose bleeds could be migraine related. Children often have stomache aches instead of or in addition to head pain with a migraine.
I'm not a neuro and am just guessing, but it sounds like maybe both cluster & migraine. The waking up screaming with a headache sounds like cluster, but the other symptoms including being tired (migraine sleep doesn't give you rest) sounds very much like migraines.
Another thing to consider... I rarely get migraine any more, but do get it after some medications. Could be that the medications triggered the bout of migraine.
Good luck!
Mark
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christie
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Re: Does this sond right to you??
« Reply #21 on: Jun 24th, 2003, 10:13am » |
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Hi all - here's the latest.....Saw the paed yesterday and he haas now decided he wants to run an MRI scan after all. He said the ct result is 'not definitive' and an mri would be. Should happen in a couple of wks.
If this truly is 'clusters' - what on earth could show up on an MRI?
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Woobie
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Re: Does this sond right to you??
« Reply #22 on: Jun 24th, 2003, 11:16am » |
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I'm sorry to hear about your daughter. I hope you find out what's going on.... soon. And I hope it's not Clusters. Not a baby..
OK.. so the MRI thing. I think if you have clusters, it will be normal. A CT scan will also be normal, i believe. I think they do those scans to rule out other possibilities... which is good.
My husband had an MRI and a CT scan.. both were "normal" and he definately has Clusters.
Man, i hope she gets better. I cannot imagine what you both are going thru.
Praying for you,
Tina 
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