I NEED ADVICE!! HELP PLEASE!

Let me describe my life briefly, I'm a junior in high school and last August i moved from my hometown Maryland to North Carolina.. imagine how much stress that puts on a 16 year old girl with migraines!javascript:emoticonp('') I've played soccer since i was about 4 or 5 years old, I've played on the ODP level (Olympic developmental program)and club and high school teams all my life.. except for this year. I've had Migraines for a year now. They seem to be getting worse and worse, I've been to the hospital and have had injections in the hip several times, might i add... they have never worked. I feel like I'm about to hit a breaking point soon. My Mom is working on getting me an appointment in at Duke but who knows how long that will take. I feel Very lonely here in North Carolina, I haven't been able to make friends because i feel like I'm ALWAYS in a bad mood because of my migraines or all the medication I'm on and know one seems to understand that.


I need some advice... My dad completely has no idea what it's like to have a migraine. And I'm sure all of you out there can relate to this, how we have to be in a completely dark room with no lights and no sound what so ever and thinking or walking around only makes it worse and the only this to make it better is sleep. (Well, for me at least)

Since I've been playing soccer all my life, it's kind of our little bond that we have and with me not playing it's heartbreaking to him. And since high school soccer season starts up in the spring in North Carolina, he wants me to try out. I feel like he has completely lost his mind, 3 days ago i had to get 2 injections in each hip and he's telling me that i have to and that it could make them go away. But I just feel like he thinks that having a migraines is no big deal and that i can just play soccer with one.. which is definitely not the case.

Please help me! I don't know what to do. I feel like maybe i should bring him to the doctors with me and have them explain it to him? i don't know... please give me your advice.

my email is Kristen.Cima@yahoo.com

Kristen,

So sorry to hear of your troubles. I've been out of high school for a number of years and high school is hard enough without having a medical condition adding to your troubles. Especially this one. I'm an adult and there are many days I haven't been able to leave the house and it's very isolating. It's also very frustrating when the medications don't help or have such nasty side-effects. And when it stops you from doing the things that you love to.

Explaining to family....yeah this can be a toughie. One thought that came to mind is that I have a feeling you are a pretty tough girl (playing soccer as long as you have and it can be a physical sport) and we tough girls will play with all sorts of injuries and often times through the pain. Your dad probably doesn't realize that this is a different kind of pain - one you can't just play through. It also does sound like you and he have a decent relationship (no one has a perfect one), I'd sit him down and tell him exactly what you are going through. How exercise, to your level, is unbearable and the pain does not go away. I think he probably has no idea how bad it is. Get descriptive, describe the pain as best you can and the other symptoms (if you have them and I'm betting you do). Be honest - this is not what you want either. If you could you would be out there playing but the migraines make it impossible. A rather dumb question, has he seen you when things are at it's worst? I know when I get one it's written plain as day across my face.

Before taking him to the doctors with you - if you've tried to talk to him and he doesn't get it, enlist your mom. It sounds like she understands more of what you are going through and she may have to run interference for you with him if he doesn't get it. The only reason I say this, often times the neurologist will recommend daily exercise (not to the level of playing a sport) but like 30 minutes of walking. I can see your dad taking this as a sign that you should "just suck it up and do it" especially if he's trying to mandate this anyway. One other rather "sneaky" way around it - I can imagine that you need a physical to play. Have your doctor outlaw it - they can flunk you on a physical and this could be a real reason not to.

Just my thoughts. I hope you are able to get some help soon and they get it so you are feeling better soon.

Becky

I'm so sorry you are having a rough time. Going through frequent migraines at your age must be tough and I wish there was something I could do.

I understand the stress of the move. I moved when I was in 7th grade at 14 years old. I made such a difficult adjustment that I often got into trouble and flunked my classes when I had never done that before. I didn't make too many friends and the friends I had aquired were bad ones. I was stressed and depressed and resorted to many bad ways to escape those feelings. Moving at that age is extremely difficult for a lot of people. I did not have chronic migraines like I have now at that time, but I did get menstrual migraines once a month for a day or two at a time.

If your Dad is a logical person like mine is, he may like some GOOD research. I say good because not everything on google is reliable. I tend to show my Dad well backed up medical documents that help him understand migraine pain. It is usually things he can understand that obviously agree with what I want him to know. I have used wikipedia, CNN, migraine.org (National Migraine Association, similar to the National Cancer Associations and whatnot) and other very reputable research sites.

Keep in mind that this is only what helped my father because he is a very "research based" man. He likes facts, plain and simple. Ones that come from highly regarded places. After I shared a lot of information with him, he started to side with me and become more sympathetic to my pain. He calls every day now to ask me how I am feeling and how my medication is working. He actually listens to my input without research now because he knows I also follow only reputable sites and references. I do take into account other theories, but they are just that...theories. I usually put them on the back burner as something to think about rather than rely on.

Sometimes this site may provide your father some insight too. Seeing grown adults falter to their knees with these migraines may change his mind as well if he isn't into research and more into personal experiences. This site is riddled with great information as well as clear descriptions of what is like for many different people to go through daily/chronic conditions similar to yours.

I think it depends on the doctor you are seeing if you'd like to bring your father with you. If your MD is sympathetic to migraines, by all means go with him. If your doctor just passes off medication and doesn't show emotion in his body language, facial expressions and advice, I wouldn't advise you taking your father. Like heeler said, a lot of doctors will suggest a half hour of exercise a day and some will not take into account the type of exercise you participate in being they are educated in treatment but have never suffered a migraine. I would never sign up for a rigorous program such as soccer which requires so much practice knowing I had unpredictable migraines...at least until I got them under control, which is very possible.

Don't give up, keep seeing your doctor or as many doctors as you want/family can afford to find a solution. Hopefully you will be up and running in no time, and if that isn't the case it is okay. Feel bad for a little while about it but please don't let it take you over. You will have bad days but there are good days too, even though it may seem impossible right now. We are here to support you if you need us.

Hope I have helped and I wish you loads of success. Keep us posted and try to think of better days ahead!

have him read some posts on here. alot of people have described the awful day with M pretty well.
I think most dont realize how we suffer.

Hi and welcome to the migraine page!

I am so sorry to hear that you are having such a rough time. I have had chronic intractable migraine/ New daily persistent headache since age 17, now 29. I have cetainly been in your position. I was at boarding school when the headaches began and had to leave halfway through my senior year to finish high school at home. I am sure the move was rough.

I am so sorry to hear that your father does not understand migraine. It is not an easy thing to understand, but it sounds like he truly does not get it. Yes, i think it might be a good idea to take your father to a drs appointment. Maybe he will listen to a neurologist or headache specialist. If your father likes to read, there are a couple of good books on migraine that might be helpful. One of the best is All in My Head by Paula Kamen. (i am simply throwing this out there.) My brother does not understand migraine at all- even after seeing me deal with it for years. As to soccer, I would simply tell him that you can't play this season- that you want to get better first- so you can play a sport that you love. It sounds like you are doing all that you can. Unfortunately, many people do not understand how hard it is to get the simplest things done with a migraine, never mind playing a sport. It is also hard for others to understand migraine because it is invisible- you do not look sick, but you are in pain. If nothing else, have your doctor talk to your dad. I wish I had more advice, but it counds like you are doing everything right.

I hope you can get in with Duke soon. Are you seeing a neurologist now? Has anything helped. Mine are very difficult to break and never responded well to triptans or to DHE. I hope that something works soon. I wish there was a better way to find out what works, but trial and error is the only proven way to figure out what works best for you.

I hope that things improve. I am also going to send you an email about this.

Pain free days,
sailingm

Thank you very much everyone.

And sailingm, Yes i see a neurologist currently. I get migraines daily, some are worse than others, and the time i get them varies from either morning or late afternoon. So Were switching the current medicine I've been on since last January, depakote and elavil, to topamax. We just started the changed a couple days ago so i couldn't tell you that i feel a change... especially since on Friday i had to get an injection in both hips to break my ongoing migraine that i had all week last week (it never once went away) and the injection didn't even fully work.

I am so sorry for your pain. I am glad that you found this forum. It has helped me immensely to know that there are people that understand. I have also learned a lot about treatments and other people's experiences with meds. I hope that you have good luck with your Dr.s and that you find a way to live a fulfilling life. I am so sorry that you are having a hard time with the move. Being sick is hard enough without being so lonely. Stress can also trigger the migraines (isn't that just great). I understand your father's hesitancy and need for you to be "normal". My father when through it too. It is hard for them to see their little girls suffering. I agree that giving him some good facts about migraine and what you go through might help. I never wanted my parents to feel sorry for me. But they needed to understand why I couldn't... (insert activity here), play soccer, go to class, go out with friends etc. the National Migraine association at Migraine.org has some wonderful resources for you and for your family. I also like migraineresearchfoundation.com.

Be your own advocate. Learn as much about this disease as you can.

And I wish you the best of luck,

Mary Anne

Kristen,

First, welcome to the board & I'm sorry you have to be here. Secondly, you've found us... you are not alone.

I know it's hard to be 16 & sick. I was sick when I was your age. Out of school more than I was in school. I had a cold that turned into something nasty & I was going to the doctor every week & she didn't know what was wrong with me. Finally, I was diagnosed with asthma & allergies, but for four or five months, I was lonely and miserable and taking so many (unnecessary) pills, my only contacts were my family & doctors. So, I know a little of what you are going through.

When I got my first migraine, it was something new to all of us & the least understanding was my dad. (Yes dad, the way you crunch on your potato chips is driving me bonkers.... I remember that well & I remember him laughing at me.) To this day, he's the least understanding. Of course, he wants me to get better, but doesn't understand why I can't "will myself" to get better. "If you just think positive thoughts" he says, "the migraine will go away." If only, dad!

So trust me, you are in good company.

I don't have any miracle solutions. The best thing I've done is get my mom to understand what I'm going through so she can explain it better to him. Sometimes, it's that he's scared. His little girl is hurt and he can't do anything to help. Sometimes, it's that he feels helpless in the situation. But he needs to understand that what he's doing is hurting us more. That's what mom does. Explains to him that he just needs to back off.

Good luck to you with your dad. Keep writing here if you feel it helps.

Rachel

I am a male and here is the way I describe my pain to my male friends. I tell them to imagine being tied to a chair and having your torturer comes in and clamps a vice grip pliers down on one testicle and then smiles and says, "hang in there, be tough, take some apirins and be a man. I'll be back in 2-3 hrs. and then we'll talk about it." Then he walks away smiling leaving you to writhe in pain like a worm impaled on a fishhook.

I am serious about this. You must convey the gravity of your situation to him. After you have described it to him in those terms, then have him accompany you to a neuro specialist who will back up and confirm what you're saying. His input will carry a lot of weight.

One thing to keep in mind is that family and friends can be in a type of denial about the pain of your plight. On an instinctual level it is very unsettling to see other people in horrible pain; it hits too close to home. Also, it is hard for a loved one to sit and watch you in pain and not be able to do anything about it. Their minds sort of blank out when it comes to this. I know because I had a friend that suffered migraines before I started getting mine from a spinal injury. I was unsettling to be around her because I had never seen anyone in that much pain and I would always roll my eyes in my head and think, "Well, after all, she's a woman." Little did I know that me, a stoic macho guy would be brought to his knees sobbing in pain and begging God to lift the pain, smashing my fist into concrete bricks over and over again to try to draw my attention to a lesser, more familiar pain I was able to manage.

Young lady, you have a serious neurological disorder that needs immediate attention; do not wait and do not hesitate.


Sadly experienced

Jake Steele

Hi Kristen,

First off, welcome. I am sorry to say this, but it is nice to see someone my age on is forum. I am too a junior in high school and started this migraine journey a little over a year ago. So if you need to talk, I am here.

I truly feel for you. Migraines can stop you from many activities, I am not sure what the best advice is for soccer. I hope you can try out, but in you situation I do not know what is the best thing to do. Are you still playing soccer outside of school. You could tell your dad, that (well if you cannot try out) you cannot be on the team but you will give it your best on an outside team...

I am kind of in the same boat with the whole dad situation, minus the soccer. For me it was tennis. I did not try out this year, but I have joined other things like Yearbook and Ballet. It all depends on your relationship. Maybe, soccer is not the only thing you two have together. I am sorry I cannot give you better advice, as I am trying to explain I find that I do not have the answers for myself and it is hard to find answers for you. I am sorry.

Well, I hope for the best. I hope you can make the team. I hope one day every non-migrainer will know how to support/help migrainers out. And I hope and pray that you and everyone on the forum will get well soon.

Lillian

Hey there,

After reading your story I can totally relate to your pain! I to suffer from chronic daily headaches. I am 25 and this has been going on since I was 15. I've seen doctor after doctor. In and out of the hospital...nobody can figure out where they are coming from and it seems like no medication works.

I to was sent to a pain clinic in Chicago by my neurologist at the time! It was the worst experience of my life. It seems like when doctors give up on you that is where they send you...to the loony bin! That is exactly what that place was. I was under the impression I was being admitted to the hospital to finally figure out what was wrong with me...hoping for some answers. Instead, this place was like a rehab facility except everyone was walking around like zombies. They told my mom she could not stay with me and my mom told them point blank I am not leaving her here by herself. It was at that point this huge scary guy comes at me with a huge needle and shot of methadone! My mom literally jumped in front of him and said you are not giving that to her. He wanted to drug me so I couldn't leave!!

I'm still dealing with daily headaches..an 8 on the pain scale...but I will tell you...if I had stayed at that pain clinic it would have ruined my whole life. They would've instantly gotten me addicted to every drug in the books. Methadone is for heroin attacks not someone with chronic headaches looking for answers.

I am from the midwest...IL and have found the only thing that gets rid of my headaches is the dry heat in AZ! It seems like you have been through a lot and I understand...don't give up!!

Love always,
Alley

Welcome, Kristen, though I too am sorry that you have to be here. Know that you've found a good support community, with a wealth of experience, though.

You mentioned you were on depakote as a preventative. I was on that years ago and it did not help me. You mentioned that you were being switched to topomax. What miligram dosage? Alot of us here are on topomax, some successfully, some not. Check out the threads discussing the pros and cons of being on this preventative. I've had a lot of success with topomax, and it's helped me a great deal, but it did take almost 3 months before I noticed a real, consistent difference that lasted. As long as you don't experience severe side effects, don't give up too soon on it.

I hope things work out for you with your dad.

Kristen,

I am 62 years old and have suffered with migraines since I was about 8. Have your Dad read this. My Dad used to think that I was pretending. He always said that it was too convenient for me to have a "headache". He would never call them Migraines. Back when I was your age, there were not many medications for migraines and the only thing that ever helped was when I finally barfed. Then I would get very tired and just go to sleep. Sometimes he would whip me for "pretending" to have a "headache". I have had to pretend not to have a migraine for almost 56 years. About 4 years ago, they got so bad that I had them on a 24/7 basis. This went on for almost a year. I was put on Amitriptilyne and it really worked for almost another year. However, I am getting the migraines again. People that suffer from migraines are not pretending to be in excruciating pain. For me, when the pain finally goes away, it often leaves me feeling as if I had been run over by a truck with no energy or it left me feeling like I had a hangover. I haven't had any alcohol since I was 27.

I have found over the years that strong perfume, tobacco smoke and the smell of nicotene are very immediate triggers for migraines. Sometimes eating uncooked onions or chocolate can cause a migraine. There are many triggers for migraines and sometimes you just get a migraine for no reason at all. Stress can cause migraines. It is different for each individual. I have recently learned that my pain free year was not migraine free. I had been experiencing strange visual anomalies like strobe lights in parts of my vision, double vision and odd geometric shapes in my vision. The doctors have told me that these are really migraine headaches without the pain. Some people get these wierd visual auras before they experience the pain.

Somthing else to think about is that migraines often start in females in their early teens. I have two daughters and they both are cursed with migraines. However, migraines can start at any age and for many reasons.

Come on Dad, give your daughter all the support you can in finding something that will help and in the mean time be as understanding as you can. Your daughter needs your support as this will likely be a life-long problem for her. Although, some people get fewer migraines as they reach middle age.

Migraines are a Witch!

Hal

Methadone is for heroin attacks not someone with chronic headaches looking for answers.

Alley,

I am not trying to being rude, but I would like to point you in the right direction as I believe some people who visit this forum do use methadone for the treatment of their chronic migraines. Methadone is not ONLY for people who are trying to kick a heroin habit, please do some research before making potentially hurtful statements like this. Methadone is a opiate that is for moderate to severe pain, just like many other opiates out there like morphine, oxycodone(percocet), hydrocodone(vicodin) and codeine. Higher doses of Methadone can eliminate the "high" that a user gets from heroin, but lower doses are used for pain control and effectively at that. Here's a good link if you'd like to read up on it.

Many people with chronic migraines have to take opiates to control them. Triptans don't work for everyone. Most of us who take opiates get enough snark from people for taking them so we come here to get release from that knowing we are around people who understand. Please keep this in concideration. We wouldn't take them if it wasn't the last choice we had.

I don't think opiates should be the first line of treatment for migraines nor is methadone, but it isn't as uncommon as you think and it is possible that the clinic you went to was just trying to help you manage your pain while coming up with some answers for you. I have no idea what treatments were tried before they offered the methadone but don't shoot it down just because of things you have heard, do some research first. You'd never believe some of the stuff out there!

Best wishes and hope you feel better!

Thank you all for the advice!

My dad just had to face the fact that having a migraine IS a big deal and when it's at the point where your getting them daily and your in chronic pain, there's no way you can play a sport. I showed my mom everyone's reply's on here and it really gave her more insight on whats going on with me. And she then talked to my dad, he gets it now.. and i couldn't have done it without all the help from you guys. I'm really so happy i have all of you to relate to and ask for help.

thank you.

Kristen

So glad your parents have a better understanding now. Glad we were able to help. That's what this group is here for, ask questions - we may not know the answer, but we may have a helpful idea or two. And when you are having a bad day...well we're here for that too.

"Methadone is a opiate that is for moderate to severe pain, just like many other opiates out there like morphine, oxycodone(percocet), hydrocodone(vicodin) and codeine.
Many people with chronic migraines have to take opiates to control them. Triptans don't work for everyone. Most of us who take opiates get enough snark from people for taking them so we come here to get release from that knowing we are around people who understand. Please keep this in concideration. We wouldn't take them if it wasn't the last choice we had."

Too true... LG, I think even Stadol is classified as an opiate. And goodness knows, there's enough of us on this forum who take Stadol NS, a proven migraine rescue medication, to underscore the theory that opiates aid in the treatment of migraines. Maybe not the first line of defense, but an eventual one, for sure.
We do get alot of snark from pharmacists, doctors, family...

Anyway, Kristen, I'm so glad your dad is now willing to listen, and glad we could help you get through to him. Don't be a stranger! The board is a great source of information and support. Hoping for pain-free days for you so that you can eventually get back to the sport you love.

I am so sorry to hear that you are suffering. My daughter is 13 and her 14th birthday is quickly approacing at the end of March. That will mark her 1 year migrainiversary. Hers are related to a condition that has to do with her spinal fluid pressure being too high.

Feel free to direct your parents to some of my postings about how this has affected her life. Tell them to get a user ID for the site. It is so helpful as a parent.

My daughter, Crystal, is not a member although I have encouraged her to be. Welcome to a wonderful support network. I am happy to hear that there is a better understanding. Hopefully you will be able to get back to soccer soon.