As of January 1, 2019, we have closed our forums. This is a decision we did not come to lightly, but it is necessary. The software our forums run on is just too out-of-date and it poses a significant security risk. The server software itself must be updated, and it cannot be without removing the forums.
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There are other changes as well.
Why? Well, the world has changed. And change with it, we must. The lyrics to "We Go On" for IllumiNations say it best:
We go on to the joy and through the tears
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Moving on with the current of the years.
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To a new day, we go on.
It's time to move on and move forward.
PassPorter is a small business, and for many years it supported our family. But the world changed, print books took a backseat to the Internet, and for a long time now it has been unable to make ends meet. We've had to find new ways to support our family, which means new careers and less and less time available to devote to our first baby, PassPorter.
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If you miss us, you can still find some of us online. Sara started a new blog at DisneyParkPrincess.com -- I strongly urge you to visit and get on her mailing list. She IS the Disney park princess and knows Disney backward and forward. And I am blogging as well at JenniferMaker.com, which is a little craft blog I started a couple of years ago to make ends meet. You can see and hear me in my craft show at https://www.youtube.com/c/jennifermaker . Many PassPorter readers and fans are on Facebook, in groups they formed like the PassPorter Trip Reports and PassPorter Crafting Challenge (if you join, just let them know you read about it in the newsletter). And some of our most devoted community members started a forum of their own at Pixie Dust Lane and all are invited over.
So we encourage you to stay in touch with us and your fellow community members wherever works best for you!
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My DS, 8, was diagnosed with cluster migraines this week. I'm told they are very rare (0.1% of population) and very hard to treat. I'm scared but hopeful the next round of headaches won't occur for another few years (can occur as often as days apart or as few as decades apart). Does anyone know anything about how bad the pain is? If there are signs I should watch for that may help in preventing the headaches? I've read that these are called suicide headaches and are so painful they are compared to childbirth or worse. I'm very scared because I can do so little to help. We have 2 weeks until the new neurologist can see him.
Just a side question, my son had 2 seizure type episodes last year (June & Oct), could these be related to the headaches? I know that's a question for the docs but all I've heard is "I don't know". DS basically has the docs stumped and I'm standing by helpless. Does anyone have experience with migraines or seizures? Should i be asking specific questions? Do you have any resources?
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Welcome, So sorry to hear about your son.
I have migraines but not cluster type.
For me the pain can range from mild to " take me to the ER" the really bad ones are few & far between. Learning the triggers is the first defence. Mine come from not eating, some of my regular pain meds can trigger them & some food items. They can also just come for no reason I can figure out yet..
Everyone is different & once you know what can bring them on you will have better control.
A few years ago I was diagnosed with chronic daily migraines. I used to be on medication to prevent them but the med side effects were worse than the migraines!
Learn his triggers and write them down to create a list to give to the doctor. I hope your new neurologist works out. It took me several to get a diagnosis.
My DS11 gets cluster migraines. It is not fun, he has only had two episodes one was over a week and the other was 5 days. He has had CT scans and an MRI and theya re both normal. Nothing would help with the pain and since he is too young for most migraine meds our Peditrician tols us to try giving him a motrin with benedryl since alot of migraine meds have an antihistime in them ayway and for the most part it does help, there are days he just has to go to bed because the pain is so bad but most times that combination helps break the cycle. Good luck to you and your son, hope you get some answers, will be thinking of you...
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My DS11 gets cluster migraines. It is not fun, he has only had two episodes one was over a week and the other was 5 days. He has had CT scans and an MRI and theya re both normal. Nothing would help with the pain and since he is too young for most migraine meds our Peditrician tols us to try giving him a motrin with benedryl since alot of migraine meds have an antihistime in them ayway and for the most part it does help, there are days he just has to go to bed because the pain is so bad but most times that combination helps break the cycle. Good luck to you and your son, hope you get some answers, will be thinking of you...
Poor guy! Thanks for the advice. I'll def ask the doc. Unfortunately he's had 2 headaches in 2 days this week BUT caffeinated pop has helped both days. My DS has had a CT scan once after a seizure but no MRI. Should i ask for one? Or do you think it's too much and not worth it?
Poor guy! Thanks for the advice. I'll def ask the doc. Unfortunately he's had 2 headaches in 2 days this week BUT caffeinated pop has helped both days. My DS has had a CT scan once after a seizure but no MRI. Should i ask for one? Or do you think it's too much and not worth it?
Have you asked your doc if he thinks the tests are necessary? He would have the best insight into what is needed, I'd think.
Have you asked your doc if he thinks the tests are necessary? He would have the best insight into what is needed, I'd think.
I have asked the family doc and he says he to see a neurologist. His original neurologist didn't think it was necessary but that was before the headaches. We are going to see a new one so we will see what she says. I'm starting to feel like a broken record with all the same questions and no new answers!
I have asked the family doc and he says he to see a neurologist. His original neurologist didn't think it was necessary but that was before the headaches. We are going to see a new one so we will see what she says. I'm starting to feel like a broken record with all the same questions and no new answers!
I feel so bad for you. I hear situations like yours all the time. Please keep your chin up, and know you can always come here for support!
Me! I've had cluster migraines for 13 years. You are accurate in that they make one suicidal - no doubt about that. As far as treatment, there really isn't one. Sadly, we just have to ride it out. And as far as preventing them, there isn't much to do there either. I kept a journal for a long time trying to find my trigger, and never did. The randomness is part of the madness of it. I'd say I average 2 a year, but I've gone thru spells of getting several in a month, and I had one stretch of almost 2 years with none. They come on very suddenly! I usually wake with them, but I have had one come on while I was sitting in a restaurant.
I can tell you what has helped me ride them out better.
For me, not walking is important. Even getting up to get ice I think made things much worse for me. Most times it feels better to rock back and forth.
Also, sitting straight up with pillows behind my head. Lying down increases the pressure in my head.
The single most important thing I've learned is this: keep a regular sleep schedule! Changing your body's clock is a definite trigger for a cm. I recently changed my work schedule rather abruptly and this brought on a cm. Go to bed and get up around the same time every day, even on weekends. I'm a real nightowl and used to stay up late weekends, but now I am so afraid of another cm, I am obsessed with keeping in my sleep schedule within an hour minimum. If you do end up staying up late, it is more important to wake when you normally do than to get more sleep. This may be tough to enforce for your son's age, but if he starts the habit now, he'll likely suffer less later. He can always nap that afternoon, or go to bed earlier the next night. Even on weekends, I set my alarm only 30 minutes later than on weekdays, specifically for this purpose. For my upcoming Med cruise, I've developed a long period of steppping down my waking time in order to adjust to the 5-hour time difference.
The pain: it feels as if someone has taken a long nail, pushed it through my left ear, lodged it behind my left eye, and then randomly bangs on it with a hammer. It feels as if my eye will push out of its socket, like it has nowhere else to go because it is being pushed from behind. Mine is always on my left side – my right side feels perfectly normal. I just sit and hold my hand over my eye the whole time – hours – crying and yelling out (and I typcially only cry at chick flicks).
On a recent Dr Oz show he said that CM sufferers should use nasal spray with capsaicin in it (the stuff in chili peppers). Sinus Buster and Sinol are brands I've seen online. I havne't found it in my local store though. You can get Sinus Buster on Amazon.com.
As far as the seizures, I haven't read anything about that before, so I'd say it may or may not be related.
I do not have any real resources, just stuff I've read online. A good overview: Cluster headache - MayoClinic.com. If I come across anything new, I'll let you know. Please feel free to pm me if you end up having more specific questions later.
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Lumieregirl-I feel soooooo bad for you! That is just terrible! Thank you for the insight. When my son gets headaches he holds his right eye and cries. I will def try the pillow thing! The sleep schedule is hard because of his activities but if the hour window helps I def will try it. The only problem is making everyone realize what we are trying! I don't have him every weekend so we will have to wait and see.
I will look for the sinus spray but not sure if DS will let me try those. He freaks out if he has to take medicine for anything. I finally convinced him to take 1 adult advil when he feels a headache coming on so he can try to sleep through part of the headache. Again we will see!
On a recent Dr Oz show he said that CM sufferers should use nasal spray with capsaicin in it (the stuff in chili peppers). Sinus Buster and Sinol are brands I've seen online. I havne't found it in my local store though. You can get Sinus Buster on Amazon.com.
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Thank you for that wonderful post. I hope you find a solution to the pain very soon.
I wonder if the capsasin is why I LOVE Wasabi. It just seems to make you feel no pain.
Haaa - yeah it is funny now that I hear about the chili thing, it make sense, but i wouldn't have come up with it on my own. Everytime I have a bad congested headcold, the hot & sour soup from the local chinese restaurant does the trick. That is $2 well spent - that'll clear your sinuses in a jiffy
As for the headaches, I try not to feel too sorry for myself - I know other people deal with daily pain. At least these episodes are relatively spread out.
The last time I had a really bad cluster headache I'd been waking around 8am forever and then got up at 5am one morning (and hadn't slept well the night before, anticipating the early, busy day). That day I felt fine, but woke with a cluster the next morning I should have known better ...
I don't think 30-min to an hour makes much difference, but a big change like I did just messes with your internal clock too much.
I proably wouldn't have been keen on nasal spray at his age either. I wonder if you sprayed it into a warm, wet washcloth, and then let him just breathe that in - maybe that would work.
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PassPorter's Free-Book to Walt Disney World It’s hard to believe anything is free at Walt Disney World; but there are actually a number of things you can get or do for little to no cost. This e-book documents over 200 free or cheap tips to do before you go and after you arrive. You could save a considerable amount of money following these tips. Perhaps more importantly; you can discover overlooked attractions and little-known details most people whiz by on their way to spend money. Click here to see free sample pages from the e-book! Get this popular e-book free of extra charges when you join the PassPorter's Club for as little as $4.95. A club pass includes access to all our other e-books; e-worksheets; super-size photos; and more! This e-book is also available for separate purchase in the PassPorter Online Store for just $5.95.
Another cluster migraine sufferer here. I was diagnosed with migraines when I was about 12, after passing out in a shopping mall from the pain. They tried dozens of medications, nothing really working and they had me keep a diary. However, over time I started noticing that certain headaches were very different then the other ones that i was getting. After many doctors, they said that I was having cluster migraines as well as migraines. My grandfather was a cluster headache sufferer all of his life as well.
I have gone through years of only having regular migraines, and then suddenly out of no where the cluster hits and as Lumiregirl said, the pain is centered behind the eye, and most of the time I feel like ripping my eye out. There really isn't anything that works, my doctor has told me antihistimes as well to reduce some of the sinus pressure which can help a bit, one doctor used to give me sedatives just so I could pass out.
For me they always start at night, I will feel the onset when going to bed, and the way I know it is a cluster over one of the usual migraines is that I get restless, and the pain is excuriating on one side, if I fall asleep it is not for long and I have had them last as long as 24 hours.
They do come like clockwork though, for a long time I would get maybe 1 a year - same time, during the change of weather period, usually in Spetember becuase I remember it would always happen right after the start of school. Once I had the kids I did get my frequent migraines but the clusters stopped for many years, then every once in a while they would start up, then stop as fast as they started.
Its strange that you brought up the subject becuase after not having one for many years (and I will tell you that I would take a regular migraine as bad as they are over the cluster any day) suddenly four months ago I suddenly started getting them again, like clockwork at the end of the month, the strange thing is that it happened always during "that time of the month"- doctor has me keeping a diary again, but so far it has been every month at that time and then the rest of the time...knock on wood nothing, but I have to say I have been dreading that time when it gets close. I have been out of work each month for a day becuase I just cannot function. I will agree though laying down does not help, sitting up doesn't help, I find the rocking back and forth just comes naturally...not sure why.
I am so sorry that your son is going though this, but definitely keep the diary, I have found every doctor that I have gone too has always preached the diary, not that we have figured out any triggers but it does help catch certain symptoms or clues that one is coming. I hope that the doctor can give you some more information and advice, and hope that he does not have another one for a long time.
Haaa - yeah it is funny now that I hear about the chili thing, it make sense, but i wouldn't have come up with it on my own. Everytime I have a bad congested headcold, the hot & sour soup from the local chinese restaurant does the trick. That is $2 well spent - that'll clear your sinuses in a jiffy
work.
I think it was somehow intuitive, I just discovered that, when I eat Sushi, if I put a little too much Wasabi on, it creates a little almost painful feeling followed by a great clarity and absence of pain. Or maybe it just feels so good when the pain stops! I know...wierd!!!
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