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tonic

Cluster Headaches or Migraines - having difficulty getting a diagnosis

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Hi there, I came across this forum whilst researching headaches and thought I could ask some opinions.

 

My son (10 yrs old) has had terrible, short-lived headaches since he was about 5 years old. I thought they were going away but seem to have settled into a routine of 3 or 4 times a year.  Each time he has 1 to 3 a day for a few days, but I am having difficulty getting any clarity as to what is happening.  The doctor and pediatrician I have seen say that they are migraines, probably caused by hitting his head when he was five.  However, the headaches only occur for about 15-30 mins and he generally needs to be moving around when they are at their worst and not in a dark still space which seems unusual for migraines.  I also didn't think migraines repeated a few times in the course of a single day. When I ask whether they could be cluster headaches the doctors both said yes, they come in groups so they are clusters. It is like they don't know these are two different things.  I really want clarity as I am willing to put dietary changes into place if these are migraines but it will be difficult for him (he is autistic and food is tricky) so I don't want to go through a period of making everyone's life miserable whilst he adapts if it is not likely to help.

 

So, if I am wondering if you think it is worth me gently confronting the doctors to get them to look at this again?

 

My boy has sensory differences, one of which is that he has a pretty high pain/discomfort threshold.  When he gets unwell, sore throat etc he tells me but keeps on going as per normal and I usually think it must be not too bad.  Then one of the others in the family get it from him and we are wasted, in bed, utterly miserable. Very rarely he gets what he calls a normal headache, and he will often tell me at bedtime and on further discussion it turns out he had it all day and there was really no sign to me that anything was going on with him. So, when he gets one of these headaches behind his eye and he is sobbing, begging me to stop the pain, rocking and hitting his head I can tell it is not a normal headache pain. The first one in the group, and the ones that wake him at night are the worst, he can't settle to be still, he is crying and begging me to fix it and occasionally he is nauseous. After the first one the day time headaches are not so bad, he still cries but he can often lie still if he can watch loud tv, it seems the noise and lights distract him a bit.

 

Each time they start we give him ibuprofen or similar. I am not sure if they help (which would indicate these are not cluster headaches) or if the pain only lasts a short time anyway. I am too scared to leave him in this much pain without doing something to find out if it is the meds acting or if the pain stops on its own. I can't tell if his eye is teary or his nose blocked as he is crying, so both are happening anyway.

 

As t he is having only about 4 groups a year, and they usually last 2 - 5 days,  I haven't wanted to put him on preventatives without knowing we were treating the right thing. I really need some understanding so I can do the best I can for him, I need to know I didn't overlook something and he suffered these attacks through his childhood unnecessarily.

 

So, do these sound like cluster headaches? Should I try again with the doctors or try to see a neurologist? He has had an MRI and it came back normal, which seems to have set the doctors minds at rest, but not mine!

 

Thanks for taking the time to read my long post!

 

Toni

 

 

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Toni, it must be terrible for you to see your son in so much pain.  In my opinion, I think you have done a beautiful job thinking about this and you have written about it very clearly.  Sure sounds like clusters.  I'm not sure how much difference a cluster headache diagnosis as opposed to migraine diagnosis will help with treatment at this point (except for oxygen, as I discuss below).

 

From what I have read, only briefly, about diet and migraine, the same possible triggers to avoid, such as some cheeses, chocolate, nitrites, and MSG, also apply to CH.  But those things generally only affect people with CH when they are in cycle -- they don't bring on cycles.  I am skeptical of general dietary claims related to CH (and migraine).  We have people with all sorts of relatively "pure" eating practices, who still get their CH cycles and attacks.  Lately, a couple of folks have said they believe that a low-histamine diet helps them when they are in a CH cycle, and that does make sense for CH, since histamines are involved in CH.  I guess all I'm saying is that an anti-migraine diet might also help with CH . . . or it might not make much difference, whether your son has migraines or CH.

 

Of course, I have no idea what medications you son, or any ten-year-old, could use.  Medically, some of the baseline treatments for CH are the same as the standard ones for migraine -- verapamil as a preventive and sumatriptan injections for aborting attacks.  The major difference in treating CH is that inhaling pure oxygen is very effective to abort CH attacks, but not nearly as effective for migraine.  If you could somehow get oxygen and have him try it as soon as an attack starts, you'd of course know whether it works and you'd have a good diagnostic indicator, too.  You can see more about oxygen for CH here: https://clusterbusters.org/oxygen-information/

 

The "vitamin D3" regimen seems to help both people with CH and people with migraines.  https://clusterbusters.org/forums/topic/1308-d3-regimen/

 

Just two last thoughts.  (1) In some places, doctors seem to believe that there's such a thing as "cluster migraines." (I have to say that just anecdotally, this seems to be more true in the UK than it is in the US.)  But there really isn't such a thing, so, yes, it is reasonable for you to assume that your doctors don't know what CH is.  (2) I don't think that primary headache conditions like migraine and CH can be attributed to hitting one's head, although I suppose that if these started when he was five and that's when he hit his head, it could be more than coincidence.  I'm just saying that it could be coincidence, it could not be coincidence (neither of which really matters to you since he has the condition now and it doesn't really matter what caused it), or it could be that there is something going on that was not detected on the MRI.

 

I am the parent of a person with CH.  My kid was older than yours when her attacks became serious, although I think she had them before she was two years old.  It's tough to deal with, and I wish you the very best with finding a treatment that helps.

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Hi Toni!

 

I would add to CHF's post that you should get his pediatrician to send him to a Pediatric Neurologist. He is young and has other issues, so I am suggesting pediatric.One with headache experience would be best.

 

I have Autism and Asperger's in my family. Autistics need that 'special' someone to treat them. To understand them. For them to open up to. A pediatric neuro would be easier to find than a pediatric headache neuro. If that can't be accomplished because there is not one, then a regular headache specialist neuro. 

 

Mine started as 20 minute long hits. Meds cannot help in that short of a time frame very well.

 

If he can get O2 that would be heavenly. No meds work as well as O2 in killing a headache. Yes, there are triptans, but I would try to post phone them for a later date, when he is older.

 

They certainly sound like Clusters to me.

 

You will be glad that you found us. You are being a very good advocate for your son.

 

Hugs!!!

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Hi there, thank you so much for the replies and for taking the time to read such a long post!  I feel encouraged just to have made contact with others who understand, it feels lonely at times trying to work out how to help my son when others just don't understand the situation.

 

We saw a pediatric neurologist a couple of years ago to assess if his earlier head injury was the cause of the headaches. She felt it likely was but there is really now way to be sure. I will contact her again and see if she can assess him for cluster headaches.  I don't know if we could get access to oxygen, it is not something I have heard discussed here in New Zealand, but she is probably the person to ask.

 

At the moment the fact that they are short headaches means to me that the use of strong medications is not necessary, but I want to be prepared for if they escalate rather than wait til then and be scrabbling for to work out what could help him.

 

I know hyperbaric oxygen therapy is used to help some medical issues, does anyone know if it has been tried to reduce the frequency of attacks?

 

Thanks again, I shall spend some time reading through posts and learning!

 

Toni

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In general, hyperbaric oxygen has some effectiveness for aborting attacks, but it's not effective as a preventive -- or not effective enough unless the patients are "desperate." http://cep.sagepub.com/content/early/2014/04/10/0333102414529672  https://clusterbusters.org/treatments-options-choices-and-more/medications-for-cluster-headache/hyperbaric-oxygen/  I don't think researchers are even trying it anymore.

It's important for you to know that inhaled oxygen is the most effective and most side-effect-free treatment there is for aborting CH attacks in adults. Used properly, it will abort most attacks for more than 90% of people with CH.  Many doctors, even neurologists, are not aware of this, even though it is well documented (see the JAMA study in the oxygen page I linked you to in my previous post).  I have no idea what factors might be in play for someone as young as your son.  If a physician acknowledges the effectiveness and superiority of oxygen therapy but says it's not good for a ten-year-old, I'd accept that.  But if the physician is not familiar with oxygen therapy, or somehow dismisses it, I would keep looking for a better doctor.  It's a completely crazy (and crazy-making) aspect of CH that the best abortive treatment for CH is not known by many or even most doctors (including neurologists), and that even if they do know about it or are made aware of it, they still don't prescribe it.

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Thanks CHfather. I will address the use of oxygen with the neurologist, it does sound like the best option for us. I probably won't get to see her for several weeks as waiting lists are usually long. I will keep researching till then and let you know what happens.

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Toni', I posted this at another thread, but I'm putting it here, too, to make it more likely that you might see it:

>>> I just came across this recent discussion of treating CH in children.  Of course, all that can be seen is the abstract, but it supports the "standard" CH meds -- oxygen, verap, and sumatriptan.

http://www.ncbi.nlm.nih.gov/pubmed/27377982 <<<

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Hi again, we have been fortunate to get a quick appointment to see a Pediatric Neurologist this Friday! I have printed out information on the Vitamin D regimen to ask about doses for a child. I have also printed out information on O2 to take and discuss.

 

I am wondering if there are any other articles you suggest I print out and take?

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Great news! 

I would think that you might at least bring a citation to that pediatric article I linked to a few posts previously.  I can't find a full-text version on the internet, but maybe the doctor will have better journal access.  Even the abstract will inform the doc of core pediatric treatment standards -- oxygen, verapamil, and sumatriptan.  I don't think you yet have a formal CH diagnosis (as I'm remembering).  I don't trust a neurologist to even know what CH is, let alone diagnose it, so I would consider bringing (1) something that lists CH symptoms (and perhaps contrasts them with migraine symptoms), and (2) maybe keeping a headache diary over the next few days.

Wishing you great progress! 

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Thanks, I'll take that abstract and some more info about CH. I have a record of his headaches over the past couple of years.  He is fortunate to only have them about every three months, so I have recorded how many a day and for how many days each time. I'll let you know how it turns out. 

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Hi again, I thought I'd let you know how we went with the pediatric neurologist. She thinks my boy is having migraines.  I am a little skeptical/annoyed but willing to go with her expertise unless it becomes obviously incorrect.

 

Her view was that:

  • his headaches are far too frequent to be CH (he gets them about every 3 months or so), she felt that CH would only occur once or twice a year and would be at a consistent time of day, which his aren't,
  • they do not last for a long enough period (they tend to occur repeatedly for a few days, less than a week),
  • we haven't been able to confirm any eyelid drooping, teariness etc because he is crying, and she would expect to see a blood shot eye on the pained side and maybe one sided sweating,
  • migraines are far more likely in a child, she hasn't ever diagnosed CH buthas many patients with migraines.

 

She did feel it was strange that he will seek out the distraction of the tv if the headache is not severe, not usual for a migraine.

 

So, for now I am happy to try and get more information from my son. Next time he has a headache I will video him and try to photograph his face/eye.  Hopefully he will have a milder one that doesn't result in crying so I can clearly see if there is any extra tearing, bloodshot etc on that side. That way I will feel more confident to either accept migraines as the diagnosis or have more info to try for a CH diagnosis.

 

She has advised us on some dietary changes to reduce migraines, but as we are due to move house in three weeks I think those can wait until life is more settled again. I showed her the D3 regimen and asked for advice reducing it for children, but she was a bit horrified at the amounts even for an adult and it was obvious she hasn't much knowledge on the use of these supplements. He already gets many of these daily so I will read up on children's limits and increase what he is getting.

 

So, we will wait and watch and see what happens.  For now he is coping with the headaches but if they increase in length (either for each headache or for the length of the cluster) I will be pushing to have more done.  Through the process of getting him diagnosed for autism I learned that I have to take information to the right expert to get the diagnosis, not just go with what the first person told me. He has an odd form of autism and so doesn't fit the norm and until I found the right specialist I was getting shuttled about without any success getting a diagnosis. So, now I find it difficult to work out when to accept what I am told and when I should keep digging myself, generally I keep digging until I am convinced which must be annoying to the health professionals I see.... :P

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Thank you so much for this report.  I have been wondering how that appointment went, and I'm sure that others have been, too.  There's a lot to quibble with in her diagnosis, but at least none of it is plain wrong.  (I'll say more tomorrow about my quibbles.)

 

Did she look at any previous blood test results to see what his current vitamin D level is?  Most basic panels include that information, and it would of course be helpful for knowing whether taking more D3 would be advisable.  Yes, many docs are horrified by the amount of D3 in the regimen, but in part that's because the recommended daily allowance is far lower than it should be because of a math error in the original calculation.  For adults, 10,000IU/day is regarded as safe, and the amounts that have to be taken to induce toxicity (which is reversible just by stopping taking the D3) are huge, over long periods of time.  (As I'm sure you know, more than a few people have suggested some possible linkage between low D levels and autism. I'm only observing this, not trying to get into your business on that subject.)  You can find information about D3 dosage levels for children here: https://www.vitamindcouncil.org/about-vitamin-d/am-i-getting-too-much-vitamin-d/

 

I guess it's also a little puzzling to me that it seems that all she gave you were dietary recommendations for migraines.  It appears from those few articles that we could find that verapamil and sumatriptan are recommended treatments for pediatric CH.  They are also treatments for migraine.  So I wonder why, just in case her diagnosis was wrong, she wouldn't have given you some meds that treat both conditions. There could have been many good reasons to err on the side of caution and see first what the dietary recommendations accomplish. I just feel like too often docs, who aren't the ones suffering, don't really take that suffering into account when they prescribe.  Even if it's "only" migraines, it clearly is causing suffering for your son.

 

I feel the same general sense of frustrated dissatisfaction that I think you feel, and also the same "maybe she's right" sense that I think you are feeling about the diagnosis.  Wish it was clearer or simpler.  And wish I could be more helpful.

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Toni,

My quibbles, which I said in my last post that I'd mention, are really about your doctor's overreliance on "typical" CH characteristics.  If you look at this journal article, based on a survey of more than 1100 people with CH, you can see that variations are not uncommon.

http://clusterheadacheinfo.wdfiles.com/local--files/file:us-clusterheadache-survey-1/US-clusterheadache-survey.pdf

 

Again, I'm not saying she's wrong; just saying that I'm not convinced.

 

One interesting thing in this survey is that 35% of the respondents said their CH started before they were 20 years old.  I'd bet that the incidence of CH being diagnosed in people under 20 is much, much lower.

 

The study shows that for almost 20% of people, attacks do not occur at the same time of day, and that for 40%, they don't come on at the same time of year (or at least not in the same month).  Redness of the eye is a common, but not necessary, symptom, and sweating is even less common.  I think that for many people, their CH periods were pretty short when they started getting them.  I agree that it's more common for non-chronics to have a couple of cycles a year, not a cycle every three months . . . but I have no idea whether that's diagnostically significant.  I also don't know what's typical of migraines.

 

"Migraines are far more likely in a child, she hasn't ever diagnosed CH but has many patients with migraines." Of course . . . but of course maybe she's never diagnosed CH in children because she always thinks they're migraines.

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"Migraines are far more likely in a child, she hasn't ever diagnosed CH but has many patients with migraines." Of course . . . but of course maybe she's never diagnosed CH in children because she always thinks they're migraines.

 

Yes, I thought that too!

 

Thanks for your input, I will take a look at the survey and may forward it to her if I think it will help. She annoyed me by reminding me that not everything I read online is accurate. I know this is true, but I also know that I would be lost with my son's issues if I hadn't spent the time reading online. Also, I kind of resent the implication that I can't tell if the information I am reading is quality or drivel. But I am probably being over sensitive as this tends to be the response to any online information I take to professionals, yet how else am I supposed to help my son? Rely on them alone and assume they have a working knowledge of rare issues they haven't come across before? 

 

Anyway, that's enough of me being stroppy! Thanks for your helpful feedback, I now wait to see what else I can learn from his next bout of headaches. I almost hope they happen soon so I can feel like I am making progress towards helping him.  Of course, I'd prefer I spent hours doing research for nothing and they never return again....

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Tonic,

I was misdiagnosed for 20 years. NOT ALL CH are the same! Keep pushing his doctor! Go to another doctor to get second opinion. My CH follow the normal guidelines of migraines mostly because I get both at the same time. Question for you, does your son have a bad headache (migraine) which can last all day in which he gets multable real bad hits for a 30 to 90 minute durations during the headache?

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Tonic,

I was misdiagnosed for 20 years. NOT ALL CH are the same! Keep pushing his doctor! Go to another doctor to get second opinion. My CH follow the normal guidelines of migraines mostly because I get both at the same time. Question for you, does your son have a bad headache (migraine) which can last all day in which he gets multable real bad hits for a 30 to 90 minute durations during the headache?

Hi Mit12, thanks for your input! He gets short headaches, usually about 15-30 minutes long, rather than long ones. I am happy at the moment to take pictures/video next time he has one and take a good look for any of the visual signs such as teary eye, blocked nose, etc. I have also read about a swelling at the back of the neck so will look for that also.

 

If I see no other signs that can be used to diagnose CH I will progress as if they are migraines all the while watching and recording and implementing things such as  the vit d3 regimen once I can get the levels altered for a child.

 

At the moment his emotional outbursts caused by the autism cause him more distress that the headaches, as they occur daily rather than every few months. So, they need to be my priority day to day. We are also moving house in 2.5 weeks so hopefully we will get through that before the next bout so I can focus on them fully and decide whether to push for a CH diagnosis or not.

 

I really appreciate all the support that has been given to me. It has really helped me feel less alone in this (my husband is very supportive too, but it is not the same as having people who really understand, as he is often not around when we are dealing with the headaches).

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I have never seen swelling at the back of the neck described as a CH symptom.  Not saying it isn't . . .

You might consider emailing Batch, the fellow who developed the D3 regimen and who follows it very closely.  He is a great guy -- a true CH hero, in my book -- and it's almost certain that he will respond to any questions you ask him.  He might not know anything about D in kids, but it's worth asking him, I think.  Email him from here: https://clusterbusters.org/forums/user/17422-batch/

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Perhaps it is just too early, but I cannot find the original statement about a knot or swelling at the back of the neck!!!

 

In my experience, yes, you can get what is often called a 'Cluster Knot'. Often at the base of the skull on the CH side. It hurts and does not respond to massage. It can cause pain in the neck to accompany the CH head pain. Not fun.

 

For me, as a cycle progresses, the knot gets worse. On occasion neck pain is the first sign that a hit is coming.

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Thank you for this correction, spiny!  The original statement from Toni is in the first paragraph of the next-to-last post on page 1 of this thread. 

Do you think the "Cluster Knot" would be detectable visually -- do you think there's enough actual swelling (as opposed to just tenderness) for that?

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When I am in episode, the back of my neck/base of skull (occipital) on the side of my headaches gets very tender - I get an occipital nerve block, and that really lessens the severity and frequency of my headaches. There is variability in how effective it is from episode to episode, and from shot to shot - sometime I notice a huge difference, other times not so much. I also get temporal nerve blocks as well, usually at the same time. Both are "high volume", which uses the max dose of whatever cocktail your doc uses (there are minor variations in recipe). The only other block that I know of for cluster is the sphenopalatine, which is and "up the nose" drip affair, and it hits in the inside corner of your eye/nose sinus area - haven't gone there yet, but I probably will some day when I get even more desperate that I am now -----

 

Yet another thing to discuss with your ped neuro - all the best luck, and I hope your child finds relief soon.

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Hi again, thanks for the info on the 'cluster knot'. I remember reading something about it somewhere.... but I will take note to ask him about it.

 

An update, my boy had four headaches last Friday. He was very tearful and clingy for a few days before so I will watch for that  in future.  He says he can't tell when they are coming on but it may just be that he doesn't recognise the pattern yet so I will keep looking for one. The headaches were all short lived, about 15 minutes I think. They were also on the milder side, he wasn't crying this time but was groggy acting which happens when the pain is interfering with his thoughts and actions.

 

I was able to check his eyes, no sign of weepiness or redness on the sore side.  The first headache he had a congested nostril on the opposite side and at a later headache he had the nostril blocked on the same side as the pain ....so that really doesn't help. The last headache woke him up and he got quite distressed about the light in the next room being on, so it seems that light bothers him if they happen at night but not in the day...

 

So, once we are settled into our new home in a couple of weeks I will look at addressing the dietary changes the doctor recommended for helping with headaches (it looked a lot like a low histamine diet to me) and get on to the vit d regimen. We are pretty busy getting ready to move and last night a rat chewed through a water pipe in the ceiling so we woke up to water dripping through the light fittings. We have pulled up the carpet to dry it and will need to get it relaid and the ceiling replaced, painted etc hopefully before we move out in 10 days time! Damn rodents!

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