Re: Lynne- About Luke: migraine & paralysis

[Guest guest]

Concerning the stroke versus migraine issue, we are extremely well versed in the strokes WITH migraines. This is a big part of my girls' Mito. They routinely have strokes and they always come with migraines in different levels of pain. I read an excellent article the other day that talked about all the things you mentioned and I am sure he not only is having migraines, but stroke activity with it due to the long lasting affects/issues. I also have lots of experience with the difference between TIA's, stroke episodes, and strokes. Concerning taking him to the hospital during the episodes, I am unsure if they can do anything for him at his age. I would think they can because most meds consider him an adult, but as for my girls, they cannot have the stroke stopping/limiting drugs since they are children. There is absolutely no medication that can stop their strokes from getting worse! That is the reason we remain home during the strokes unless it causes breathing issues or as in the April 2002 stroke which paralyzed her entire left side. Luke has been scheduled to see our neurologist at Mayo for a while now. The first visit unfortunately takes about 1 1/2 months to schedule. It is scheduled for the 28th of July so only a couple weeks away. He is also scheduled for an MRI/MRA and that wonderful EMG everyone has been talking about. This neurologist has been looking into the hemiplegic migraine issue for our family for quite some time as the migraines and strokes are so routine around here. She is also agreeing that Mito looks to be a big part of the picture and wonders if we have an atypical form of MELAS. Concerning the inflammation issues, with migraines several forms can happen. Inflammation can cause them and strokes, vascular compression also can cause them both, and one other thing that I can't remember causes them. Due to Asenath having CNS "brain" vasculitis we are all too aware that strokes and migraines come from the vessels for varied reasons. Blood clots, narrowing arteries being compressed, etc... And due to the Mito issue we know that inflammation in the brain causes temporary squeezing of the vessels and compression in areas of the brain causing less oxygen and blood flow to the brain parts near the inflammation. I guess what I was wondering was other peoples' experiences with migraines and strokes and how common it is in Mito as well as if others have had temporary paralysis during the migraine and follow-up prickles/stabbing after the migraines. The reading I have done mentions neurological impacts before and the aura before the migraines and some neurological effects after migraines. Also symptoms during quiet/non-pain migraines, but all the research I have found states that if there is left damage it is probably due to the occurrence of a stroke. Luke has had past damage and seems to be reacting the same way Asenath and Zipporrah have been with lasting damage. I really did not want another child to have to deal with this and it is a little scary that he only started having the damage in the past few years, although when he was younger he seemed to always be sick, he was the one who always had the flu or viruses before the girls were born and he had headaches frequently, never to the pain level he recently has been experiencing though. He also has battled tons of asthma and allergies to the point where he would rub his eye lashes out. Thank the Lord the allergy shots have helped tons with that! I am just trying to put all the pieces together and praying the migraine/headaches I see in Leah, Rachael, Isaac, and Tirzah (which is ALL of my other biological children) do not start to get worse. The do tell me their heads hurt quite badly and some last for days to weeks for the older kids. I plan to research more on what to avoid for migraines to see if it helps them as well as talk more thoroughly on the topic with the neurologist. Concerning his trip, it is a missions trip rather than a camp and he is already gone. We did warn the leader he had to take it easy due to the health issues he has and included migraines to be a part of the issues. There is a couple that really love him along for the trip and although I didn't know till the last evening so I never had the chance to speak to them, I know they will watch out for him and make sure he is ok. Luke is on God's hands and I know God will take care of him Luke is very close in his walk with Christ. I am very proud of him and his desire to serve God. I really want this trip to go well for him. Thanks for your help and advice. I will keep you posted on how he does. Darla: mommy to Asenath, Zipporrah, Luke, and the other 6 kiddos check out: www.caringbridge.org/ia/mitomomof9 Re: About Luke: migraine & paralysis Darla, hemiplegic migraine can cause that. The hemiplegia usuallypasses after a short time. Hemiplegic migraine does not cause lastingdamage, unless a small stroke occurs during it. Strokes are a bit morelikely during any form of migraine (if I am remembering right), becausethe blood vessels are often constricted. But they are still rare. Hemiplegic migraine could explain the transient symptoms. But youwould want to get TIA's ruled out first. Hemiplegic migraine is adiagnosis of exclusion, so you have to rule everything else out, first.But if he does have that, there are meds such as verapamil and severalothers, which can help decrease the frequency and severity of theattacks. Has he been checked out by a doctor? If he is actually having strokes, or could be, he should go to theER the next time to get it checked out. If it is a stroke, he could getmeds that would help to limit the amount of damage done. The meds areonly good if used in the first 12 hours or so, I think - I could bewrong on the time-frame, but I know it's a relatively short time-frame.They are supposed to help a lot, though. I think they work by reducinginflammation which can damage other parts of the brain, following thestroke - but again, I could be wrong, as I only skimmed that info whilelooking for something else. Good luck, whatever it is! Hemiplegic migraine would not be such abad thing, in the overall scope of things, if that is what it is. What is your feeling about the camp? Would it help to talk to thedirector, to be sure Luke gets breaks as needed, and stayswell-hydrated? Or is this something Luke really needs to do himself?I'm guessing this is a coming-of-age thing for Luke and something hewill need to handle. But do you feel pretty confident that he will belistened to if needed, and not pushed beyond his limits? Is the campaware of his issues?Lynne

[Guest guest]

Wow, you seem to have read most of the same stuff as me, and then

some.

I have only found the same info about hemiplegic migraine as you

(ie, lasting damage only happens if there is a stroke), which is why I

don't think Jericho has that. He too has lasting damage, though his

only occurs if he has an episode that lasts a week or longer. And he

never has pain in his head. Plus his MRI's haven't shown evidence of a

stroke.

Sorry I can't help more with the symptoms after migraine, as

migraine was only something being considered for Jericho's case, and we

still don't know what he has.

As for Luke's mission - it's funny but I had a good feeling about it

too. I'm glad you are letting him go.

I hope the other kids' migraines will respond to something, and turn

out okay. Have any of your other kids been checked for vasculitis?

On another topic - you have mentioned in the past that Asenath and

Zipporrah have strokes when they get viruses. That is something that is

coming up now, with Jericho's ped. She thinks he may be getting viruses

that are triggering many of these episodes, even though he doesn't get a

runny nose or fever usually. That would make sense, since he never gets

sick during cold/flu seasons, but he often has episodes then. Oddly

enough though, the times he does get cold symptoms, it is always milder

than what everyone else has got, and even if he is having neuro symptoms

before and after the cold symptoms, they stop during the cold symptoms.

My impression is that when Asenath and Zipporrah get colds or flu,

they are really sick from the cold symptoms too, not just the neuro

symptoms.

Jericho's ped had me make up a chart of his labs, and I discovered

in some records that Jericho had metabolic acidosis a year and a half

ago. He was sick but had no fever, and had neuro symptoms during that.

I need to talk to his ped to find out more about that.

She has ordered more comprehensive labwork to be done the next time

he is ataxic or has a cold symptoms with a fever (which is rare, so

we'll probably be going when he has ataxia).

Good luck, I hope we both get more answers soon.

Lynne