Migraine, fainting and family

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Migraine, fainting and family

Post  sconesail on Tue 17 Jul 2012, 1:12 pm

Hi All.

I need some advice on how to deal with something. Here's the situation- any help, advice would be greatly appreciated.

As most of you know, I have had New Daily Persistent Headache/Chronic Intractable migraine for the last 14 years- since age 17, now 31. For the past 4 years, I have been struggling with a fainting problem on top of the headaches. I am the youngest of 3 children and have two older brothers- one kind of understands the problem, one doesn't.

Here is the problem. My middle brother, J, and his wife are expecting a child in September. This is great and I am very happy for both of them. However, John has never understood the headaches. My physician parents have tried to explain it to him on numerous occaisions, but it was easier to hide the migraines. The fainting terrifies him. His wife seems to pick up on my brother's fear and seems scared of me as well. This makes things hard at times.

Believe me, I know that seeing someone fall to the floorr many times a day is scary and I get that. But the whole thing is really getting in the way of things-particularly my pretty close relationship with my brother. (The day they told us they were expecting, I got at least three phone calls asking how many times I had fainted and clear instructions that I "just wasn't allowed to faint at dinner." I doubled up on everything and managed to do ok, or at least make it aroundthe corner of the restaurant so he wouldn't see me faint. ) I really want to be a part of this child's life. The real problem is that his wife knows it scares J, and it seems to scare her too. I really do not know what to do. I am trying to find a good time to drop of a present for the baby and to speak to his wife without J there. I just want to explain things to her. she has been scared of the fainting since day 1. Though everyone in my family-including J and E, his wife,- has assured me that i will be part of the kids life, the fact that they are scared of me bothers me greatly. It shouldn't, but it really hurts because J and I have always been close despite the difference in ages.

I work with kids at an elementary school. I am trying to start doing some private tutoring after school. I was with my roommate at her family reunion and I was on the floor most of the time due to fainting. The 9 month old just seemed to like the fact that I was on the floor, would play with her, and at one point she thought I was simply a jungle gym-as did her other cousin. This was in full view of many responsible adults, includeing two doctors. (one of them is great neuro and he gave me the name of my current cardiologist and et me know that my old neuro is returning to the university.) All of them seemed to understand the situation once I explained it.

J has said that there is no way that i would ever be allowed to hold the child while standing- and frankly I know better than to take the chance with that. It would also be rare that i would be alone with the child- )If they crack and ask for babysitting, I'll make sure someone is there. E has said that is ok. However, I would really just like to talk to to her face to face for 10 or 15 min without J around.

I have thought about printing out some basic stuff on dysautonomia and possibly talking to her about it when I drop the present off. I don't know what else to do or really how to best approach this. I really hope I get matched with a service dog in the fall, as J does seem better if I have Max, my parents standard poodle with me because he kind of alerts. (Ok, he runs away when I fall, but comes back to help me up.)

I am just not sure what to do anymore. It sometimes amazes me that my very smart 40 year old brother is terrified of the fainting and the 6 year olds I help at the school have told other adults- "Its ok, Sometime Ms S falls down, but we keep reading and she comes right back."

Anyway, thanks for letting me vent. Please let me know if you have any ideas.

Pain free days,
sconesail

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Re: Migraine, fainting and family

Post  milo on Tue 17 Jul 2012, 6:45 pm

Would it be fair to ask your brother to set up a time for you to see just his wife? The reason I ask is that maybe he would be more supportive if he was a part of planning it? Does that make sense?
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Re: Migraine, fainting and family

Post  Migrainegirl on Tue 17 Jul 2012, 7:54 pm

Scone,

Question: is he scared of you, or scared for you? These are really different things.

Some people are afraid of things they don't understand. Silly perhaps, but true. Educational materials and sitting down for a frank discussion, as well as being around you more often, will help to get them used to the situation. Especially if he was once close to you and is an otherwise empathetic and open minded person.

If he is scared for you, this is a bit different. He is dealing with his fear of you being hurt, injured and ill by trying to stay away from you. Easier to ignore the problem that way. Unfortunately that only causes you more pain because the one he is protecting is himself. I'm sure it is not that logical in his brain, but rather an emotional response. This is actually harder to deal with because the emotional barriers are higher. And probably denial is stronger too. Especially since he feels helpless to help you.

In this case the only way to get through is with a calm frank discussion as well. Be prepared to talk directly about how he feels when you faint and why it distresses him so much. Let him know that you faint 60 times a day without serious injury, and that while you will continue to find a solution, in the meantime the support of your family is the best help you could possibly receive. If he knows what he can do to help you when you faint, that will help him not feel so helpless.

You most likely won't really solve this by just talking to your sister-in-law. She will continue to be influenced by the feelings of your brother. My recommendation would be to talk to them both together. Might as well do it now before the baby comes as they will be too preoccupied after and more risk adverse.
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Re: Migraine, fainting and family

Post  Cluelesskitty on Tue 17 Jul 2012, 8:38 pm

I have thought about printing out some basic stuff on dysautonomia and possibly talking to her about it when I drop the present off. I don't know what else to do or really how to best approach this.

This is an excellent idea, Scone.
In the past, I found that the best approach with migraine is to educate ignorant people by precisely printing out the stuff
pertaining to this subject- because, what could be more neutral yet informative if not knowledgeable articles?
So, you are on the right track, Scone.

There is something else, however, which I am not sure how to say except with my usual lack of grace - sweetie, you need to face that
by being meek and yielding you are allowing to how you are being treated by your brother and his wife.

"You are not allowed to faint at the dinner table???" - sorry but what the freakkk is this c*ap!?!
Suppose she is not allowed to deliver before I finish reading my latest book, and believe me I am nowhere close the end, hmmm.

What/who the hey they think they are?
This is something that is part of you, period. this is something you have no control over, period.
And you are part of this family, good or bad, period.
It can very easily happen to them, their child, period. think about it.

They need to get over themselves and move on.

But, sweetie, this attitude this mindset MUST come from you,
from every pore of your body. You need to SHOW them you MEAN IT.
Only then, I guarantee, your brother and his wife will treat you with respect and acceptance.

Scone, you showed in the past you can kick butt. Well, - just do it again!! Smile



Good luck kiddo!!!
Risa




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Re: Migraine, fainting and family

Post  sconesail on Thu 19 Jul 2012, 6:28 am

Hi All,

Thanks so much for the replies.

All of you brought up good and different points and, in a way- all of you are right.

J has been shielded from the headaches and mostly from the fainting since day one. He has also been somewhat shielded from the headdaches by my parents. They knew it would upset him and they didn't want to mention it at family events or when I had lunch with John and stuff.

He can not deal with illness. (When one of the senior partners at his firm got very sick. Well, the sr partner actually had an epidural hematoma that required emergency brain surgery or he would have died. He was out of the office for a few weeks. J had dinner with us about a week afterwards and asked my parents why his partner was still out. My parents said, "Well J, HE HAD MAJOR BRAIN SURGERY. Many are out for much longer for knee surgery."

I knwo that John is scared of the fainting. I think he is probably more scared for me, than scared of me. But it freaks him out. I am very tired of shielding him. Our parents are not getting younger. He needs to know what is going on.

I have always had a good relationship with John. He is eight years older, but we have always been close. Right now, I feel like the only way I can deal with this i to take some information to him and, as you pointed out, it would be best to have a very frank discussion with him.

E, his wife, is a very nice girl. She is however, younger than I am. She has not had to deal with any major health problems. I also know that she seems to pick up on J's fear of the fainting. The reason I say this is because she is slightly more relaxed than J, but picks up on his fear about the fainting. So, yes, I think a meeting with her- one without J-might be the best way to go. I have a beautiful baby blanket that my roommate made for the baby. So, I have a pretty good reason to call her and see if we can meet sometime during the day. I figure I can bring the blanket over, and some simple info on syncope and just have a frank talk with her as well.

I think it might be better if I take the divide anc onquer and approach. I will try and set up a meeting with E and one with J sometime in the next week. Heck, what mother to be can say no to a baby present.

So anway, thanks so much for the advice.
But if anyone has any new ideas or a better plan, let me know.

Pain free days,
sconesail

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Re: Migraine, fainting and family

Post  Cluelesskitty on Thu 19 Jul 2012, 3:14 pm

John is a wimp.
He is an adult, for cripes sake, and if he is going to have child, who the heck is going to raise his child - his neighbours?
Is he going to cop out every time his child will have, say seizure, or faint like you? - it can happen, you know, considering your history.

For Pete's sake, you all are enabling him, and he sure does enjoy this complete lack of responsibility. who wouldn't.
I can't believe even at his workplace his boss would enable him, and I find this story hard to swallow.

This gotta stop, period.

Risa

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Re: Migraine, fainting and family

Post  milo on Thu 19 Jul 2012, 6:42 pm

Personally, I'd start with "John, lets talk about my health".
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Re: Migraine, fainting and family

Post  sconesail on Fri 20 Jul 2012, 10:08 am

Hi All,

Thanks for all the replies.

All of you- in one way or another- hit the nail on the head. John is a good guy in general and, for the most part, he is a great brother. I know that he would step between me and danger without a second thought.

When it comes to illness though, John has no patience at all. He is extremely healthy. Even though he grew up with one parent who had amd still has chronic back pain, he dealt with it by ignoring it. My mother, who is a physician, and just as stubborn as I am, always hid the pain as much as she could in public and at work and stuff. I do the same thing with the migraines. the main reason I haven't talked to him about this a whole lot is that he just doesn't get it. But I think the time has come to give it another try.

I am also having lunch with my sister-in-law next week. This will give me a chance to explain things to her. I will probably talk to John seperately, as I feel that is the best way to go. This silence just isn't good for anyone.

Thanks,

Pain free days,
sconesail

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Re: Migraine, fainting and family

Post  Cluelesskitty on Fri 20 Jul 2012, 6:46 pm

Absolutely, Scone!
How is it that it is actually the healthy person that everyone is tiptoeing around??

I thought it supposed to be the other way - the healthy suppose to tip-toe around us sickos!
lol

Risa

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Re: Migraine, fainting and family

Post  777Trinity on Fri 20 Jul 2012, 7:22 pm

Cluelesskitty wrote:Absolutely, Scone!
How is it that it is actually the healthy person that everyone is tiptoeing around??

I thought it supposed to be the other way - the healthy suppose to tip-toe around us sickos!
lol

Risa

Risa:

You are right, the sick ones should be pampered more!!! I am dreaming about a beach and the sun and waves and the breeze!! Wish someone in my family would just say hey....she needs a break lets take her to the beach!

Has ANYONE ever had a family member think along those lines for you?? Just sayin Smile

Trinity
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Re: Migraine, fainting and family

Post  30yrsofheadache on Sat 21 Jul 2012, 5:50 am

Scone, I think in trying to "protect" your brother, your parents havee made it that much harder for you. How is that fair? I dont try to hide hard things from my girls. I think they sense things and think the worst.

I try to break things gently, but I tell them the truth. They have known about all my illnesses, and are very compassionate because of it. Dont be afraid to tell you brother and his wife about how you feel. Time for everyone to stop shielding him. You are the one with the pain! I love you
Hugs,
Cindy

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Re: Migraine, fainting and family

Post  Migrainegirl on Sat 21 Jul 2012, 10:27 am

I guess I don't get it. While does he need to be " protected" for goodness sake? He's a grown man.
Surely he is not that fragile. If he is, he needs to get some counseling and get over it pronto.
Parenthood is not for weenies.
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Re: Migraine, fainting and family

Post  777Trinity on Sat 21 Jul 2012, 3:09 pm

Why not just keep it simple???
____________________________________________________________________

Dear Brother and Sister-In-Law:

I faint, I faint daily, I have migraines and feel like crap alot. However, this is not "Contageous" nor will it harm you in any way.

I won't carry your baby around when its born and I promise I won't ask to "babysit"...I know my limitations.

So if you brother of mine and dear sister-in-law, could just stop freaking out and stop treating me like I am the freak, it would be greatly appreciated!

Now, that said, I'll see you at the next family function and when I pass out, you just stay cool because I always get back up. Okay??

____________________________________________________________________

Trinity's birdeyes veiw which of course in real life couldn't be this simple, right? SmileSmile
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Re: Migraine, fainting and family

Post  Cluelesskitty on Sat 21 Jul 2012, 6:00 pm

All excellent suggestions and input, and Cindy -
Time for everyone to stop shielding him. You are the one with the pain!

oh -so - BINGO !!!!

Risa

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Re: Migraine, fainting and family

Post  sconesail on Fri 27 Jul 2012, 3:06 pm

Hi All,

Thanks for all the advice and replies.

I had lunch with E, my sister-in-law yesterday. I laid the cards on the table and was sort of surprised by her remark, "SS, I am not one bit scared or worried about you around the baby. J is just kind of a wimp sometimes." This actually let me know two things- one, my brother chose well, 2, She gets it and can keep him in check.

We had a wonderful time and certainly plan to do it again. It was just so nice to know that she isn't scared of me. I know that she is smart, bu for some reason I feel better knowing that she gets J and is sympathetic to my situation. I just feel better about it.

Pain free days,
sconesail

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Re: Migraine, fainting and family

Post  Cluelesskitty on Fri 27 Jul 2012, 3:44 pm

Wow, amazing what can we learn if we open lines of communication, eh?

Kudos to you Scone for taking a deep breath, and big step forward!
It's good to know you do have an ally in your corner - now, all you need is keep believing in yourself and your importance :]

Risa





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