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ClusterBusters

tonic

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  1. 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!
  2. 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).
  3. 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....
  4. 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....
  5. 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.
  6. 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?
  7. tonic

    Registrate your pain

    What program do I need to open and run this?
  8. That link is not working for me, but it looks like one I saw on another thread. Thanks for thinking of me!
  9. tonic

    New - From NZ

    Leonhart, thanks for that link regarding children, I'll go off and read it soon. I am booking my son in to see the pediatric neurologist to specifically discuss diagnosis, I really hope that will lead us on the path to helping him. He doesn't have light sensitivity, in fact if the headache is on the milder side he will seek out a loud tv show to distract himself. When they are bad he just lies down and rolls about crying for me to stop it. Fortunately they are short lived for now and if we can get a diagnosis and access to oxygen then we may be able to prevent him from suffering as others like you have.
  10. tonic

    Registrate your pain

    This sounds like it could be very helpful. I am hopeless at getting paper or the computer fired up to record these sorts of details, but I do make time and date type notes on my phone. I would definitely be interested in using an app to record more detail.
  11. tonic

    New - From NZ

    Leonhart, can I ask about your headaches when you were a child? Did they start off frequent and severe or did they start as less and get worse as you grew? My sons are every 3 or 4 months and several over a few days (the longest has been 5 days), but they appear to only last up to half an hour at the most. I am hopeful that they won't escalate as he ages but would like to know if others have found that they do. CHfather, thanks for the encouragement, you have been more than welcoming and very helpful!
  12. tonic

    New - From NZ

    Hi there, I joined this forum a couple of days ago looking for support to help with my 10 year old sons headaches. We are in NZ also (Tauranga, where are you?), so am interested to hear how you have found getting a diagnosis and support here. I learned from trying to get help for his autism that sometimes you have to go kicking down doors until someone eventually listens and believes you! I suspect I will need to go the same route with his headaches also.... It is so tiring fighting to get help form the people who are supposed to be helping you. Anyway, I read an article somewhere online about a NZer who was able to get oxygen for his CH, do a search on google for something like 'getting oxygen for CH in NZ'. He described how he went about it and where he eventually got the oxygen. It seems this may be the best option for us also, but I need to get advice on using oxygen for a child first, and talk to the pediatric neurologist about the situation. So, welcome! And I will be interested to hear more about your experiences getting support here in NZ. Toni
  13. 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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