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Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › Another question about headaches

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Another question about headaches (Read 5089 times)

Rena

Senior Poster

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Hi, My son Tyler was diagnosed
with MM in 2003

Posts: 467
, Colorado, USA
Gender: female

Another question about headaches
Sep 16^th, 2005 at 9:30am

I have seen where a few people were diagnosed and then someone older in the family was diagnosed.

I have just recetly started having headaches whenever I have anything on my head (sunglasses, headbands, hats) I have always worn these things and the fit is the same. I am not having any migrains, but was wondering if anyone remembers this problem before the migrains started?

As you might have noticed, Tyler is almost identical to me in looks, therefore this makes me wonder if I need to get tested......dang I am so scared to even think about the possibilities.

I've learned to never underestimate the impossible. -Blake Sheldon-&&There are no failures, just options tried. -Thomas Edison-&&

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shgr

Experienced Poster

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Diagnosed December 2003

Posts: 144
raleigh, USA, usa, 469, 184, NC, North_Carolina
Gender: female

Re: Another question about headaches
Reply #1 - Sep 16^th, 2005 at 9:57am

Rena,
I have been asked to describe my headaches and I refer to them as my tight goggle headaches. I developed my really bad headaches almost at once, 6 months before my 1st stroke. I had never had noticable headaches prior and I was 26 at the time. From my recollection I did develop headaches in stages, but they have always manifested themselves as if I have something too tight on my head. I often actually try to take my sunglasses off my head-----but they are not there!!!!
Hope this helps,
Stephanie

Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all. Dale Carnegie

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Shan

Old-Time Poster

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MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female

Re: Another question about headaches
Reply #2 - Sep 16^th, 2005 at 10:58am

Hi Rena,

As you know, I was only diagnosed with MM this past May; however, from as long as I can remember...I could never wear my hair in a ponytail, or have sunglasses on my head, or even wear visors or hats. For some reason, my head always hurt! Embarrassed

I'm not sure if it's related or linked to MM in any way, though. I remember having headaches in my youth and having CT scans in my late middle school/early high school years, but nothing significant came out of those tests. I was also diagnosed with migraines many years ago (but never diagnosed with MM) and was prescribed Imitrex and a couple of other migraine meds...

My suggestion would be to mention your concern to your doctor, and especially Tyler's doctor who is a MM specialist. I'm still trying to find out more about MM and herediatry issues as I'm sure we all are...as I'm concerned about the possiblity of my son getting MM too, especially because he's had headaches in the past! Sad

. Please let me know what you find out...It would be interesting to know if those indicators I mentioned above, and what you're feeling have any link to MM. I know there could probably be a million other reasons, but things like this make you think...hmmmm.... Smiley

Take care,
Shan

« Last Edit: Sep 16^th, 2005 at 11:02am by Shan »

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis

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dragonladyRN

New Poster

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Diagnosed with MM in 1985

Posts: 21
New Bedford, USA, usa, 528, 89, MA, Massachusetts
Gender: female

Re: Another question about headaches
Reply #3 - Sep 16^th, 2005 at 11:11am

Wow! Another weird coincidence! I, too, have always had headaches, and could never wear my hair in a ponytail. If I did, that "brusied" feeling when I would take my hair down, would be the same kind of feeling that my head would have after one of my migraines!

My son, Nathan, is now 12, and has always had headaches. I had him tested MRI/MRA at BCH when he was 6 because of these headaches, and Dr. Scott said that he was moyamoya free. His headaches have lessened with age, and I just keep an eye out for any other MM symptoms. My neurologist, who believes that I suffer from migraines, not TIAs, also asked about my son, and whether or not he has headaches/and gets car sick easily. He says that migraines are hereditary, and they often are associated with car sickness in children.

Interesting stuff!!!

Renee

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Shan

Old-Time Poster

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MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female

Re: Another question about headaches
Reply #4 - Sep 16^th, 2005 at 12:18pm

Renee--I don't know why it just dawned on me after reading your post, but the next time my son starts experiencing his headaches (knock on wood he doesn't...) I'm going to ask about him being tested further. So far, no tests have been done. I'm then going to send them to my neurosurgeon and Dr. Scott, who I've read specializes in MM in children for their opinions. Wink

He and I also get car sick! Tongue

Quick question..did your son's pediatrician order the tests, or did your son have to see a neurologist? This may sound silly, but are there such people as pedianeurologists (?)or do children see the same neurologists as us? Anyone? Smiley

Take care,
Shan

« Last Edit: Sep 16^th, 2005 at 12:24pm by Shan »

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis

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Sara

Experienced Poster

Offline

I am 15 years post-op
and loving life!

Posts: 208
Houston, USA, usa, 291, 279, TX, Texas
Gender: female

Re: Another question about headaches
Reply #5 - Sep 16^th, 2005 at 1:21pm

I have always gotten headaches when I were a hat or a pony tail to long. But I don't think it is MM related. I say this because I know A LOT of people who have this and they don't have MM... I think doctors worry about hats and such right after surgery because of the incisions, but not because of mm directly, if that makes sense...

Also, Shan, children do see different doctors than adults. They see Pediatric Nerologists. Some neurologists see children and adults, though...

Rena, if you have any concerns that you may have MM, please see a doctor!! We all know how devestating MM can be if it goes overlooked!

Sara

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Linda

New Poster

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Posts: 16
Knightstown, USA, usa, 388, 144, IN, Indiana
Gender: female

Re: Another question about headaches
Reply #6 - Sep 16^th, 2005 at 2:39pm

Hi!

New here! Does any one who has had surgery still have strange sensations in their heads - tightening and such. When I am in a breeze I get pulsing and tightening and when I get upset or nervous I have not necessarily pain but a not so nice feeling shoot straight to the top of my head. Tongue

I have noticed that since surgery other than sinus I have not had one headache and I have suffered with migranes since infancy. Smiley

Linda

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Rena Senior Poster Offline Hi, My son Tyler was diagnosed with MM in 2003 Posts: 467 , Colorado, USA Gender:	Re: Another question about headaches Reply #7 - Sep 16^th, 2005 at 3:40pm Thanks for the replies. This is a new sensation for me and I wasn't sure if it could just be part of getting older or what. The headaches are only when I have something on my head and go away when I remove it........maybe I'm just getting sensitive. I will keep an eye on it, and mention it to my doctor.
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dragonladyRN New Poster Offline Diagnosed with MM in 1985 Posts: 21 New Bedford, USA, usa, 528, 89, MA, Massachusetts Gender:	Re: Another question about headaches Reply #8 - Sep 17^th, 2005 at 4:10pm Shan, I'm lucky enough to have insurance that does not require referrals, and Dr. Scott participates as well, so I just called him and made the appointments for my son at BCH. Luckily Dr. Scott was in the hospital on the day Nathan had his MRI/MRA so I had instant results!!! Renee
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