New mito patient/worried about headaches

[Guest guest]

Migranes are very common in Mito. It is very important, though, to make sure your doctor makes sure they are migranes and nothing else that can be more serious. My daughter, Grace, takes a medication twice a day to prevent her migranes. The med is called Periactin. For her it is like a miracle drug, she has went from daily migranes to only having one every few months or so. Best wishes.

[Guest guest]

My daughter is newly diagnoised with a Mitochondrial Cytopathy

although she has been having health problems for many years.

Recently she has started having eye pain, says it feels like someone

is squeezing her eye. My first thought was sinuses but she hasn't

got any congestion, drainage or anything like that. She does have

another ear infection, she seems to have them alot now, she never did

as a little kid. The headaches are coming about everyday, behind her

eyes and nothing seems to help them. Sometimes they last awhile

sometimes they just come on and are gone in minutes. This is new for

us, does this sound familiar to anyone. Her pediatrician is trying

allergy meds to see if that is it.

Any help would be great.

Pat

[Guest guest]

Hi Pat,

All three of my kids deal with the headaches and migraines. My kids take Amitriptaline and it helps a lot. It doesn't stop them totally, but it makes a huge difference. Does she complain of seeing any color changes or spots with the squeezing sensation? I know my Krisalynn describes her migraines as a squeezing sensation on her eyes and then she see's different colors. Any way I hope this helps

HUGS!

O and crew - Kira,, and Krisalynn Mitochondrial Myopathy-MIDS Maternally Inherited Dysautonomia- NVD ( Nuro Vascular Dystrophy) and dad Enrique

Visit our web page: WWW. caringbridge.org/ca/mitooggo

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[Guest guest]

--Pat,

Recent research has shown that most headaches believed to be sinus

headaches are actually migraines. Both my children have them. One started

at 10 and one at 4. We have gone through all the preventatives and just

about all the acute pain meds there are.

Docs have a step approach to prevention meds. First they try periactin (an old

antihistamine that prevents migraines in some people). It tends to cause

weight gain (is also used as an appetite stim in people with eating problems)

and can cause twitching and neuro side effects. Then they try the tricyclic

antidepressants (with mito you should always do an ECG before and after

starting a tricyclic). Then they try beta blockers (can't use them with asthma

most of the time). Next are the seizure drugs.

We have had the best luck with the third seizure drug we tried for our son.

Neurontin is a miracle drug for many mito patients with migraine. My 15 year

old takes 1200 mg 3 X/day. That is a big dose and must be started slowly. It

works well for many mito patients because it is not metabolized.