Question For Looneymum

[blueskies]

Hi Looneymum,

In a post some months back you mentioned that your son has 'scalp sensitivity' and migraine. I deal with migraine too and in the past year I've certainly experienced 'scalp sensitivity.' I'm just wondering if it's like your son's. When I get migraine and they last for days there will be many hours when I can't rest my head on anything. The migraine pain will usually be uni-lateral but every surface on my head hurts to touch and resting my head on a pillow or even cupping my face in my hands is extremely painful. It's added pain to the migraine and increases migraine pain, also.

Sometimes, when not migrainous, I will notice that when I touch my head it will be very painful under the area I've touched. For example, I will put my whole hand over a part of my scalp and get instant intense pain that goes as soon as I remove my hand.

Sorry that's such a long explanation. But I was wondering if that is anything similar to that which your son experiences. I did have a very brief look at the survivingpots.com site that you mentioned to me but did not know under what name your son would have posted his story. I must say, looking at the site was pretty sobering. All those young people with this problem. I count myself lucky that my pots symptoms did not really take hold until I was 46 (11 years ago now).

I've noticed that I tend to think of myself having this sometimes unbearable disorder -- at wits end and terribly unhappy at the unfairness -- only to realize repeatedly that others are dealing with stuff at a younger age than me, and/or with stuff that is so much more serious. It certainly gives me perspective.

blue

[looneymom]

Hi Blue,

My son has been dealing with this problem since he came down with the virus in December 2010. I'm so sorry you are having to deal with this on top of all your other medical problems. My son's headache started when he came down with the virus. His scalp pain started after this and gradually got worse. He was able to comb his hair for a little while and then it became intolerable. Hair cuts and shampooing became unbearable. His vocal tic starts when he starts to shampoo his hair and most times Tyler is in tears after he shampoos his hair. His scalp pain is severe and we have tried many medications to help with the headache. He washes his hair twice a month and my husbands helps him get the soap out as quickly as possible. My son has tried many migraine medications and has not found help with any. He is super sensitive to touch all over his body but his scalp and headache pain is the worst.

Our cardiologist has thought that maybe his headache and scalp pain were related to his medications and has taken him off all of those medications. My son has been off of florinif for almost 4 months and midodrine for almost 2 weeks. However, his blood pressures are running low and heart rates are high so my son may have to go back on the midodrine. These two medications can cause problems with scalp and headache pain. However, my son cannot tell any difference with headache or scalp pain.

He can lay back on a pillow. The scalp pain seems to be related to touch and pressure. The water pressure from the shower head bothers him. He also holds the shower head because we have the hand held type. My son has been to a headache specialist and he has been diagnosed with a daily persistent headache. Tyler rates his headache on a pain scale of 8 out of 10 when he gets up in the morning. His headache pain varies through out the day.

We have not found a solution to this problem. However, my son was sleep deprived for many months. He is finally able to sleep through the night without waking up. The cardiologist and I are wondering if this problem could be related to his body being sleep deprived. My son did have a 3 month period last year when his headache was totally gone and the scalp pain was not as severe. These symptoms came back with vengeance after he caught the flu this last year in January. My son takes extended release clonidine at night. This medication allows him to sleep through the night and does help with pain. We have tried giving it in the day time but it keeps him too sleepy. The blog you have been reading is all about Tyler. He is going to have some more testing done very soon. I will update the blog and let you know what those test are. We are hopeful that these test can tell us what is causing this scalp/headache pain.

Rachel

[blueskies]

Thanks Rachel

I just wrote a longer response to your answer to me but I've lost it and it's dinnertime here in Australia so I will answer you another day. But thankyou for answering me. It has been enlightening. Tyler is obviously putting up with a lot of pain dealing with this scalp problem. Your belief that it might be a sleep deprivation problem is extremely interesting. I've had sleep deprivation going on too.

As I said, I will respond more fully.

Thank you again for taking the time to answer me. I appreciate it.

Blue