Advice ?

[Concerned mom]

My son’s clusters started again today! He has been free since Dec 24th.  My son is 18 and in College. He is taking verapermil 80mg x3,  magnesium 400mg x 2,  D3 10,000 daily since Dec (last checked in January - 80), B-2 100mg x2 and 81mg aspirin (he has a congenital heart condition). We live in Massachusetts and spring always seems to trigger a cycle. Thinking of adding the melotonin 10mg (although it makes him very tired and has difficult waking) or Benadryl? I’m thinking Benadryl because he said he feels his allergies starting.  I believe I read he should take 25mg before bed, how about during the day? His clusters typically come when he wakes and sometimes again at 1 or 3 pm.  Appreciate any thoughts, Thank you. 

 

[CHfather]

Yes to the Benadryl, I would say.  For in cycle and in allergy season, the recommended is 3 25mg doses during the day and 50mg at bedtime.  That's a lot for someone trying to go to school (or pretty much anyone). I guess see what level works, if it does work.  

It's my understanding that it's very important for him to be taking the whole D3 regimen.  http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

[doctorssuck]

    I found a certain type of music that is giving me relief. I think it is helping my ch by keeping my timing systems in check. I play this music 24/7. This music is a 9 hour long youtube video by relaxdaily. He has a few other shorter(3 hour) videos and one of them seems to trigger my chs. My Meds quit working for me about a year ago and this music has helped me through it. I still get a few weak attacks but nothing like it use to be. The music is good for studying too.

[MoxieGirl]

Hi,

If Melatonin is making him groggy in the morning, but you/he thinks it'll help, have him take it earlier in the evening. I know they say 'before bed', but 6pm, 7pm 8pm are all before bed. It means the grogginess may wear off before he wakes up. I had this same issue with a medicine once, and the doctor recommended I take it earlier till I found that time in the evening when the morning grogginess went away.  

Only a small percentage of my attacks happened while I slept, like your son, most of mine were during the day and evening. I found that when my stress dropped, that's when I was most likely to get hit. I wouldn't get hit very often at work, I think because I was so worried about getting hit at work it raised my stress levels enough to keep the beast away. But when I'd get home and relax, or even on the drive home, BAM! the beast would come. Weekends were often the worst. 

So, if your son is noticing this pattern too, see if he can try some stress management techniques to keep his stress more balanced. I found that if I always had personal projects to work on, things to keep me focused with deadlines outside of work, it kept my pressure up outside of work and balanced my stress. I couldn't reduce my stress at work, but I could bring my stress outside of work up a little. Then, I'd have times in the evenings or weekends when I'd shut down and destress, times when it was Ok to get hit because I could manage it. Not a perfect solution, and doesn't always work. But I found it helped. 

MG