looneymom Posted May 14, 2013 Report Share Posted May 14, 2013 I think there has to be connection here with neurotransmitters. My son has the daily headache and his scalp hurts so bad, he can't stand to wash his hair. I get migraines and the same thing occurs. However, when my migraine goes away, the scalp pain also goes away. Does anyone else experience this? Has anyone found a study or article that connects this to neurotransmitters being too low or too high? Quote Link to comment Share on other sites More sharing options...
Mydoggielovesme2 Posted May 14, 2013 Report Share Posted May 14, 2013 I definitely get scalp pain with headaches. (Migraines) My chiropractor says it has to do with nerve endings there. Whatever the cause, I can hardly stand to have my scalped touched, yet feel the need to apply pressure to my head because the headache pain is so severe. If that makes any sense. :-) Quote Link to comment Share on other sites More sharing options...
Agreeky Posted May 15, 2013 Report Share Posted May 15, 2013 Sometimes I get a pain like somebody is pulling my hair with it? Not sure if that is similar.. Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 15, 2013 Report Share Posted May 15, 2013 Yes, I get this too and I also have some level of pain in my scalp and all of my skin all the time. What I have is called allodynia and one of the things that can cause it is migraine. Here's a link that actually explains it quite well.http://en.wikipedia.org/wiki/Allodynia Quote Link to comment Share on other sites More sharing options...
looneymom Posted May 15, 2013 Author Report Share Posted May 15, 2013 KatybugThank you so much for sending this. This problem has gotten worse in the last two months for my son. I have spoken to our cardiologist about this problem. He is very willing to research and look at other things that I mention to him. He has other pots patients but not as severe as my son. When this problem becomes severe for you, what helps? I know that we are not allowed to give out medical advice, but I just really need to know what might help? He sleeps with an ice pack at night. P/M me if this is a better solution. Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 15, 2013 Report Share Posted May 15, 2013 Oh boy...I wish I had a good answer for this question. I don't do anything specific for the allodynia other than to avoid the "bad touch" things that specifically cause me pain. I have found that the pain, although always there to some degree, is definitely a function of how controlled my migraines are. Being on Depakote as a migraine profilactic has helped reduce the level of pain in general. A good migraine abortive medication (I use maxalt) has also helped. I have used tylenol (I can't do aspirin or ibuprofen) when I am really sore and it takes the edge off. I also try to wear my softest clothes with non-constricting cuffs, waistbands, etcIes Ice helps sometimes but I find that it only helps when I have an actual headache and can feel heat radiating off my head. I have also found that soaking in an Epsom salts bath a couple times a week helps the overall pain of allodynia (as well as some other pain and symptoms as you can absord the magnesium from Epsom salts through your skin.) Hope some of these suggestions help him. I unfortunately have learned to live with it and I grin and bare hugs that are too tight and hurt, quite frankly. :-( Quote Link to comment Share on other sites More sharing options...
looneymom Posted May 15, 2013 Author Report Share Posted May 15, 2013 I will talk to our neurologist about some of these medications. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted May 16, 2013 Report Share Posted May 16, 2013 I get this too, not constant, but frequent. So far, there has been little that has helped. Lyrica and gabapentin have helped, but gave me side effects. The allodynia is often caused by central sensitization, a change in the nervous system's pain response. This doc, C. Woolfe, has more information on this stuff than any other doc I've seen. He's a pediatric neurologist in NY. I have not seen him, but I'd like to. http://www.childrenshospital.org/cfapps/research/data_admin/Site2875/mainpageS2875P0.html Quote Link to comment Share on other sites More sharing options...
BarbaraC Posted May 16, 2013 Report Share Posted May 16, 2013 Hi looneymom. I am so sorry that your son is having to deal with this pain. I have had migraines and POTS headaches for 14 years and I get really bad scalp pain too. The best (and really only) thing I have found to help with pain is a "Migra-cap." It is basically just several gel ice packs put into a stretchy fabric that you can put on your head. The ice packs are all over the head and you can even pull it down over the eyes. I am not giving any medical advice - this is just one of those home treatments that have helped me out with head and scalp pain. My husband has started using it now too whenever he gets tension headaches from work, and he loves it. They are available online if you want to try it out. Quote Link to comment Share on other sites More sharing options...
looneymom Posted May 16, 2013 Author Report Share Posted May 16, 2013 So thankful for all your replies. After reading some of the doctor's articles, I'm ready to take my son to Boston now. Quote Link to comment Share on other sites More sharing options...
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