Question for al the parents here

Hi All,

I have been wondering about something lately. I know there are some of you here who have children with migraine or are simply parents or grandparents. I am almost thirty and currently living at home because of migraines and fainting. My Mom still goes crazy when I faint. Dad is used to it.

To get to the point- is it still hard for those of you who have children with migraine or chronic pain to see them struggle through the pain? Do you get used to it? Or is there still some part that asks why?

I have been thinking a lot about the whole parent-child thing lately.

How do you deal with it? I'm still trying to figure out some of my parent's reaction to this.

Let me know?

Pain free days,
sailingm

Bless your heart SMuffin. I've 'known' you here for so many years now and I am sorry you are still suffering so.....and without the desired amount of change.

Your question is a dear one. I know you have received different kinds of responses in the past from your parents.

I am 40 now, started with migraines when I was 7yrs old. I lived at home until I was almost 28yrs old due to the mirgraines and the 'halt' it puts on the normal progession of life of a young person.

I was rasied by my mom and grandma. My grandma is an ICU RN and my mom was also in the medical profession.

I know their hearts everyday I was in pain. They watched me endure tests, dr. appt. after dr. appt....some that could make me leave in tears! They watched me have to be home schooled most of my Jr. and Sr. years of High School due to missing so many days of school due to pain and also being on so many different med trials at that time that would leave me 'out of it'.

I know their hearts ached to see my life so halted. They did all they could for me and more.

Then.......amazing things happened.....and I met someone who took me and migraine life on and I got married and moved away. I even had a miracle child!

So now I am 40, married, have a 10yr old son........still suffer from migraines....and my little family of 3 is even BACK living in my family home with my mom and grandma.

As a mother of a happy and healthy 10yr old son.........I can now truly feel how my mom and grandma must have felt all those years. My son has is ups and downs as he grows up and those ups and downs alone tear my heart out for him.

It won't matter how old YOU get SMuffin..........your parents are always going to be 'feeling' the pain of your pain in some way. It may come out in loving, supportive and positve ways at times..............and at other times it may come out as frustration, anger and impatience that they cannot cure you......also keeping in mind they are Dr.'s as well.

I pray that one day you find a middle ground of relief and results that allow you to feel better and live the independant life you want and deserve.

Supporting You.

Sailing,
It is extremely hard for me to see my son having daily migraines or headaches....he is almost 17 now. He's had them since he was at least 8 - maybe even before that. I feel like I have lived and breathed headache related information for 11 years. I wake up in the night and worry about him, I feel upset when he is in pain, I try to make up for it when he is feeling good, I am always thinking about when the next migraine will hit.

I guess I'm not as "nervous" as I used to be about it. I think part of the reason is that I have taken him out of school, so we don't have the stress of missing school and dealing with explanations to teachers, etc. It used to be very stressful for me to worry about what other people were thinking when he was always absent, or unable to make a basketball game, etc.

Paul has hardly and social life, stays home most all the time, misses out on things, and generally never feels well because of the migraines. This makes me and my husband feel very sad. We know it is not the way a teenager should be living, but we seem unable to make things change for him. It makes us feel guilty. It makes us feel like we aren't doing what we should be to give him the life he should be living. It is a catch 22 because the things we know he should do - like be with his peers, or get a job, aren't possible because he can't know when the migraine will occur.

We are the ones who are constantly insisting that he see new doctors or try new supplements/medications - he just wants to stop taking anything at this point. I don't feel like we can or should give up on finding something to help him. However, nothing we try ever seems to help. We can't seem to prevent them or reduce the pain once they start. And it does get hard for us when he doesn't want to help himself - but I understand why he is tired of it.

I worry constantly about what his future will be like - will he be able to hold down a job, will he get his GED and go on to college, how will he have a normal life with these migraines if we don't find a solution. I feel like I'm in a race against time to find a solution, but he says he doesn't care anymore - he's so used to living this way. We have many "discussions" about what to do next for the migraines. Meanwhile, my other son who is two years older than Paul probably feels angry over the situation too. He has had to grow up with this situation.

All in all, it is very frustrating, very worrisome, very tiring. We are currently without a neuro, and we are trying to decide who to see next, but Paul doesn't want to see anyone. It's hard to "drag" a 17 year old somewhere but we'vedone it before, I guess we can do it again.

So yes, we are still worried about him, and feel horrible when he is in pain, but we have learned to not get so upset/nervous about it - of course, that's only because we've taken away most of the situations which would cause us to be nervous (school, job, sports, etc.). And we try to be understanding when he never feels good, but sometimes it does get very frustrating for everyone. Hope this helps! Alexis

It is too hard right now to write about this, but I can say one thing.

I accept that this is Anna's life now, but I can't accept that this is to be her future life.

Big hugs to all who wrote.

Cheryl

Cheryl, That is a perfect way of saying exactly how I feel - you have a great way of saying things.

It just popped in my head, and it sounded "right on" for me. No way do I want this for her the next 40 years. I'm going to keep fighting.

Cheryl

I have migraines in both sides of my family. I have 3 children. 2 boys and 1 girl. 2 are prone to the occasional migraine which they handle without due fuss but one of my boys suffers badly from migraines and i feel so sorry for him. I also feel totally frustrated when he seems to get no relief from his meds. I just want to take over and help him.

He is often far away overseas so i can't do anything. He travels into countries where it is illegal to have codeine and other pain killing medications so it can be a total nightmare situation for him. Then, as his situation gets worse, i feel an overwhelming guilt that i have passed this on to my child. It's as simple as that for me, frustration and guilt.

I'm not a parent, but I'm a sick kid, lol. My parents were/are very understanding and helpful (mom RIP).

My dad understands migraines--he went through about 15 years of heavy migraines and survived in an extremely high-stress work environment. He plowed through migraines in the military as well, in the late 60's and early 70's.

I can see the worry and concern on his face. We've tried to find the best care possible.

However, when you add syncope to multiple or complex cases, the concern sky-rockets. Syncope is bad and it scares the heck out of everyone.

So I am lucky. As my dad says...."your mother and I brought you into this world, it is my duty to care for you the best that I can." I pledge back whatever help that I can to him.

Honor, loyalty, courage, understanding, & compassion every day.

I have decent days and not so decent days. I may grump here and there. My dad says it is always ok for me to vent. However he never vents. Never complains. Things can be tough. He's sat through at this point it seems like hundreds of doctor visits, tests, and procedures. I am not allowed to blow off problems--the docs have to be contacted and I must get checked out. For him though, never.

I don't like this, however he is a tough person and deals with things in his own way. So I fully beleive this is tough for every parent--and as the kid ages, I do not believe the feeling ever changes.

My grandmother was devastated by the passing of my mother and never regained her former outlook. So a parent's pain is constant. Just a very intuitive guess.

mgb

Well I will be 27 in a few weeks and I am still living at home as well due to migraines and other medical issues. I have wondered the same thing.

My mom is very understanding. My dad passed away almost 3 years ago and it always seemed like he didn't believe that I had migraines. He would tell me to suck it up and quit pretending even though be said he used to have migraines when he was a teenager.

The more I think about it lately I think that maybe he didn't know how to deal with his "little girl" being so sick. That is what I'm trying to convince myself anyways.

My mom and I have had a conversation like this and she feels like she may have caused my migraines. She feels guilty. I told her she didn't do anything and I don't blame her but she says she can't help it. She says she feels responsible for me having so many health problems. I told her it's not her fault. I told her God gave me heavy burdens in life cause he knew I could handle it I guess.

Hi Sailingm, Yes it is still very hard for me to see Zoe in pain and be unable to make it better. I remember when she was 2 years old and said "Mommy, my forehead hurts." I had the worst feeling of dread come over me. I cant even think how hard it would be to see her faint over and over. But, Mothers arent supposed to let their kids know how hard it is. It makes the child feel guilty over feeling badly. That just adds to the stress and results in more pain. Well at least thats how I see it today with a bad one of my own!
Hugs,
Cindy

My 25-year-old son gets episodic migraines and has suffered from them since he was about 4. The frequency has varied throughout the years--some months have been almost constant, but then he has some migraine-free periods that give him some hope. He also was born with several other congenital birth defects. I agree with Annabella....I feel frustration and guilt. Long story....

But, despite everything, he daily works to overcome all his physical challenges and leads a very active and productive life as engineer. He inspires me by his ability to persevere through pain and physical limitations. All of the doctoring throughout the years has given him an incredible ability to advocate for himself and speak up when he feels things are not being handled in his best interests.

In spite of everything, through, he is my "baby" and always will be. My mother's heart will worry about him, love him unconditionally, and seek better care for him for the rest of my life.

I've shared before that my mother has advanced Alzheimer's disease, but even though her memory doesn't always work the way she wants, I know she still recognizes the pain in my eyes when she sees me now and it brings tears to her eyes. The deep love for one's child permeates the deepest parts of a parent's soul and will always be there.

My 23 year old daughter has vestibular migraines and I have basilar migraines. I feel terribly guilty that she has to deal with these migraines and there are times that I get afraid for her future (she is currently in graduate school). The best that I can do for her is to teach her how to advocate for herself with her docs and also give her the one thing I did not have which is knowledge. I went 12 years just thinking I was crazy before a new family doc took my symptoms seriously. I don't blame my dad for passing on his migraine DNA to me because I did inherit some of his wonderful qualities and I don't think my daughter blames me.............Leslie

Hi ALL,

Thanks for all of your responses. I really appreciate hearing the parental perspective as well as the sick child perspective.

I know that it is hard for my parents to see me like this. I know that they want me to be well and able to do things. Up until about six months ago, I was able to live with a roommate, but as health conditions increased, it was harder to do that, so I moved back home in July.

Cheryl, I think you hit the nail on the head. I know that they want me to do more, but it often is not possible due to migraines and fainting. (The C-PAP is helping the fainting a great deal, so we will take what we can get there}.

I will also be looking into vocational rehab soon.

Mom also expleded because her thyroid is out of whack, which means her emotions go nuts and come down on us. We are also having a party in a week, that is not helping my parents mood either.

Still, thank you so much for letting me hear it from your perspective. I really needed to hear that.

Pain free days,
sailingm

I will say that watching your child suffer is far worse than having the pain yourself.

My husband used to say that he knew we were in for two or mor bad days when my son would get a migraine. I would make myself sick taking care of him. For some stupid reason he wanted me in bed with him and singing to him. I held him while he vomited. I stayed with him until he was well enough he would look at me and say, "I'm okay, Mama. Now you can be sick." And I was. Every time. The stress was so severe that it always happened.