kclynn Posted October 14, 2011 Report Share Posted October 14, 2011 My son is tanking right now All week he has been miserable, out of school since Tues. Very weak, adrenaline surges and jerks. Last night he was just standing and talking and Bam! Headache hit, top and back of head as always. He was yelling in pain they were so bad, and everytime he had a surge (every minute or so) he would scream again. I gave him 3 ibuprophen and after half hour they started to subside. This morning he got up and they have hit again. He hasn't been screaming but writhing in pain is pretty bad, but so far not as often and surges don't seem to be there like they were.I just wish.... I tried ice on his neck, didn't help. Making him drink lots of water, maybe that helped last night. His blood pressure has been a bit elevated and we have been changing up his meds and lowering his midodrine but upping his florinef (before the headaches hit).He had migraines as one of his first symptoms but they have been more rare since last winter.Trying to think of things to make him more comfortable. Quote Link to comment Share on other sites More sharing options...
Katybug Posted October 14, 2011 Report Share Posted October 14, 2011 Sorry his migraines are so bad right now. They are NO fun! Florinef can cause/trigger migraines...I can take .1 mg but when we tried to go to .2 mg I had a migraine by the second day and it lasted for 5 days and was pretty severe. Did the increase in migraines correlate with his increase in Florinef?My neuro/POTS specialist gave me a drug called Maxalt MLT which you only take when you have an acute migraine (not a preventative). It has been immensely helpful as even serious pain meds were not relieving my worst headaches. Maybe his doc could let him try it if it doesn't conflict with other meds. Its non-narcotic which I really liked because I really don't like taking anything addictive. I also usually use ice packs on the back of my neck, but, every once in a while when these don't seem to be helping, I actually need a heating pad on my neck and shoulders to help relax the muscles. It sounds couter-intuitive but it helps every once in a while. Hope he gets some relief soon. I have seen your other posts and was so hopeful for him as it seemed he was doing well with school. Quote Link to comment Share on other sites More sharing options...
kclynn Posted October 14, 2011 Author Report Share Posted October 14, 2011 It has been a couple of weeks since the last increase in Florinef .15 2X day. I will try some heat on his shoulders to relax those muscles which have been tight. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted October 18, 2011 Report Share Posted October 18, 2011 its all part of the same thing - sympathetic activation. Can he tolerate a beta blocker or clonidine? Quote Link to comment Share on other sites More sharing options...
kclynn Posted October 18, 2011 Author Report Share Posted October 18, 2011 We have an appt in 9 days (not soon enough!) with his cardiologist. We can't get in sooner, I tried but am on a call list. He has been on Florinef and Midodrine which have worked but seem less effective now, though I doubt he would be functioning at all with out them. His blood pressure has been creeping up 130's/80's. Do they add a bb to that combo? Are there beta blockers that are more effective for this symptom than others. The jerks were soo soo bad last night and the insomnia is soo bad. Quote Link to comment Share on other sites More sharing options...
Katybug Posted October 19, 2011 Report Share Posted October 19, 2011 I don't know about the drug interactions but I am on metoprolol (beta blocker) which is also thought to help migraines to some degree. His migraines could be getting worse from his BP creeping up. Maybe that's another thing to chat with the cardio about.Hope he gets some relief.... Quote Link to comment Share on other sites More sharing options...
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