My migraine

By cbrophy

2 min read

I'm 18 years old and a senior in high school. I started noticing I had migraines around 8th grade or when I was 13. I see a neurologist frequently, and have seen many other doctors as well. I've had multiple MRIs, a spinal tap, eye testing, allergy testing, chiropractic work, cranial sacral therapy, acupuncture, as well as numerous preventative meds and ones to stop a bad migraine.

My doctor is running out of meds for me to try and I'm starting to lose hope. My migraine attacks are daily, or more like I have the same headache for weeks on end with no break. I haven't been able to leave my bed in a week and a half without feeling like I will pass out, vomit, or have my head explode. It's getting close to graduation, and it looks like I won't be walking with my class.

My migraines are controlling my life and I don't know what else I can possibly do to stop them. People say "oh you'll grow out of it soon enough" but it feels like I'm growing INTO them more than anything. Every year, every month, every week they get worse and worse. I always take my meds and have a regular sleep schedule and avoid caffeine at all costs, but they still get worse. I always feel like I'm letting my parents down when they have to call the school and say I'm staying home... Again. All I want is to make them proud and do something with my life, but I can't do that when my head hurts so bad it makes me cry.

I hate it when people tell me I'm a wimp and that it probably doesn't even hurt that bad, or that I'm making it all up. I'm sick of living every single day with a migraine that makes me unable to be around light, sound, smells, unable to move my head or get up, unable to do anything at all.

I guess what I want from this site is to hear other peoples stories, and to know that I am not alone, and other people understand what I'm going through. I want to remember what it's like to have hope that one day I'll find the medicine or the little trick that will make me feel better again.

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Katie M. Golden Moderator
Caitlyn, My heart goes out to you. I'm glad you have found this site! You should check out Chronic Migraine Senior Project on Facebook. Morgan suffers from Chronic Migraines like you and she has been sharing her struggles on her page as well as updating her followers about her senior project on Migraines. It's really fascinating and I'm sure she's someone you can really relate to right now. And through this website and our FB page, you'll be able to connect with a lot of other people who are in the same boat. Ask questions, interact, use this resource and encourage your family and loved ones to use it too. I hope that it will give you strength and bring education to those around you. I have a couple of thoughts and suggestions for you: 1. I've found that sharing articles or other people's stories with my family can help them to better understand what I'm going through. For some reason, having it come from a third-party can somehow validate what you've been saying all along. 2. Don't feel like you are letting your parents down. They love you and they want you to get better. Life doesn't always play out the way we want it to. It's what you do with it that matters. 3. If you feel judged and misunderstood by your classmates, remember that most of them will be gone soon. Their views and opinions are not going to matter when you stop spending most days together in a classroom. There is life beyond high school. 4. Your health matters. This is the only body you've got. It sounds like you've tried a lot of different medications and nothing seems to be working. This is when you need to make a change. Are you seeing a neurologist? Is he/she also classified as a Headache Specialist? This type of neuro is trained in the over 300 headache disorders, while a neuro may deal with some Migraine patients plus Parkinson's, Alzheimer's and sleep disorder patients. Here is a list of Headache Specialists in the US: <a href='http://www.ucns.org/globals/axon/assets/10300.pdf' target='_blank' rel='noopener noreferrer ugc'>http://www.ucns.org/globals/axon/assets/10300.pdf</a> 5. Have you heard about Headache Clinics? There are 3 main ones in the US- Jefferson in Philly, Diamond in Chicago and the Michigan Headache & Neurological Institute. You can read about my visit to Jefferson here: <a href='http://migraine.com/blog/headache-camp/' target='_blank'>http://migraine.com/blog/headache-camp/</a> 6. Have you tried any alternative methods to complement the medications you are on? Our Natural Remedies page gives a wide range of options that you could discuss with your doctor and parents. <a href='http://migraine.com/migraine-treatment/natural-remedies/' target='_blank'>http://migraine.com/migraine-treatment/natural-remedies/</a> Ok- I gave you a lot to digest. I just want you to feel like you are not alone and there are other avenues to explore. I'm not saying that any of these will be the magic cure for you, but I thought some other resources may help. Please reach out anytime and visit the forum too. -Katie
1. cbrophy Member
 I definitely will be sharing some of these with my family, it is very true that a third party makes it more believable. I do see a neurologist, but she hasn't helped me really at all. I see her assistant once a month and she is a little more helpful but all she does is ouch more meds on me that don't work. I've been the the mayo clinic but never a headache clinic, I will have to look into that! My mom has started a business that sells essential oils and other natural remedy things so I'm going to start trying that. And I will definitely check out that link. Thanks for all the encouragement and new ideas!
angie-l Member
Caitlyn my heart goes out to you. I pray for some relief soon for you. You are not alone on this journey. My story is alot like yours except mine has only gotten super bad in the last couple years. I have dealt with the constant headaches since I was 12, but most of the time I could manage. But it finally got to the point where I was missing weeks instead of days of work. Now it is months since I been able to do anything. I am a mom of 2 boys 11 & 13, it breaks my heart that I cant be the mom I should be for them. Now to the point I wanted to make is You didnt ask for this illness this aint something you wanted or deserved but you have it. I feel like when I finally acknowledged that then it has become easier to deal with. I have always worried what people were thinking about me or worse what they were saying about me to others. Now i try to not worry about that because it dont help at all. You are so young and have your whole life ahead of you and I hope you get a treatment that will help you real soon. My neice is 13 and recently been diagnosed with migraines and I hope she can be as brave and strong as you are. Also have your parents read the information and stories on this site so they can get more of an understanding for what you are going through because you and I know that unless you have been through this storm yourself you cant really grasp the full understanding of it. But this site will give others more of an insight into your and my worlds. I have migraine brain today so if any misspelling or confusion please forgive me. And again you are so brave to put your story on this site hopefully it will help you and it will for sure help many others struggling through the same storm. Angie
1. cbrophy Member
 Thank you so much, that means a lot. I like your idea of having my parents read some of these stories, it is really hard feeling like no one understands what it feels like. I will also pray for you and your niece!
melissaravens Member
I'm so sorry you're going through this horrible experience. I've also been getting chronic migraines since I was 13. I've been through the gambit of neurologists, headache specialists, medications and diagnostic tests. I also felt the same as you when I was older and my migraines ramped up, I repeatedly had to call in sick to work. I felt like a huge disappointment to everybody. I felt like a weak person, like everybody was judging me. I am now 43 years old and I have learned some very huge things that help me a lot through my years of suffering with migraines. I wish someone would've told me this when I was younger. it sounds really simple, but it really does help. Stress is a huge contributor to triggering migraines. taking some "you" time, listening to very relaxing music or even nature sounds and slow deep breathing for about 15 mins. with no distractions. Exercise, even walking really helps (also a stress reducer). Eating healthy...No nitrates, MSG and try and keep processed foods to a minimum. drink plenty of water. of course, ask your Dr. about everything I have mentioned. Good luck!
1. cbrophy Member
 Yes I do need to start relaxing and getting a little exercise as well as eating healthy. That's the next step in trying to get rid of these migraines, my family might try going gluten free for a while as well as only eating non processed foods. Thanks for the support and advice! (:
tonynzacksmom Member
I feel for you so much. It's a very good idea to share the site and info with your family. It's almost as hard on them as it is on us and they need support too. I've found it's helped some of my family and friends understand and deal with me/my migraines better to read it themselves. I'm curious if the neurologist you are seeing is a migraine specialist? If it's just a regular neurologist, you may want to see if there is one in your area that specializes in migraines that you can see. My first neurologist basically quit on me after a couple of years of trying different meds and referred me to another neurologist who specializes in migraines to try 'alternate treatments'. While it's still a battle, I'm much happier with this specialist because he's much more sympathetic and understanding, and is a lot more aware of different meds and everything related to migraines than a regular neurologist. What struck me in your comment below is that you don't feel like they're really helping. I felt that way with my first neuro and didn't even know a migraine neuro specialist existed until he referred me out. (I hope I'm making sense and not rambling too much in my fog...) Good luck to you Caitlyn.
biscotti867 Member
Hey Caitlyn! My name is jenny and this is my first time responding to anyone's post (although I'm on here reading them daily.)Your story is soooo much like mine. You joining this support group was such a great move because it lets you know you're not alone and somebody somewhere understands your pain and frustration. After years of trying all kinds of preventive meds that never worked for me, I can honestly say I've been running out of hope that anything was ever going to help me be pain-free. I wanted to be painless for even a couple days so I could just make plans with friends and not have to break them or walk around my house without nausea or intensified pain with each step. Being at the end of my rope I started seeing a pain specialist 3 weeks ago and he has been a godsend! He REALLY listens to everything I have to say about my illness and has taken a kick-ass approach to resolving my "problem". I just got my first round of Botox shots yesterday and in 2-3 weeks I should be migraine free. He could have said I'd lay eggs and I would have felt the same amount of optimism lol. I really hope that this treatment works for me and I'll post on here and let you know how I feel in a couple weeks. Just know you're not alone Caitlyn and you've got to give yourself a break because you didn't intentionally make this horrible painful illness happen. Remind yourself of that! These migraines are not your fault so stop punishing yourself! When you're feeling low and like you're letting everyone down (yet again) tell yourself "I didn't ask for this. I don't want to be in pain. This migraine is not my fault." The people in your life that care about you will be understanding and the ones that aren't need to get out of your life ASAP anyways. Take it easy girl! I'll be sending feel good thoughts your way!! Always Jenny xo
desiree Member
My migraines started in the middle of my eighth grade year and no one believed me. They thought I was doing it for attention. I've tried sooo many different pills that I can barely remember what all they were. Since I turned 19 and lost my health care, I have had to stop all my prescription meds and just rely on OTCs. They help 25/75% of the time. I've even stopped wearing my favorite perfumes. I think that helped me some but I hope you can find something that helps you!!
caottewell Member
Hi Caitlyn, I have had severe migraine since I was five and am now in my 40's. There have been many times where I felt I tried everything and nothing was working. Don't give up hope. It took a long time to find the right medications for me. Hang in there, there are many medications out there not specifically for migraine that can be very effective. It takes time to find what works for you. A couple of years ago my doctor suggested I try Diclofenac (Voltaren) which is an anti-inflammatory. I tried the pills and they did nothing for my headaches. Then he suggested it in the form of a suppository. I was not thrilled about that but he explained to me that when we have a migraine our digestive system slows right down. Not much passes through the stomach, which is why we get nauseated and can start vomiting. So taking medications in pill form is not usually effective. When administered rectally, it is absorbed in minutes and starts to work right away. I decided when I am in that much pain, I don't care what I have to do to get relief. So I agreed to try it. That was life changing for me. It has been by far the most effective medication for my migraines and I have a tried a lot! I often get complete relief in about 20 minutes. I am not saying it is right for you but it is worth talking to your doctor about it. Another med that is helpful for me is Imitrex (nasal spray and for really bad ones, the injectable form). As a preventative, my neurologist put me on Verapamil which is actually a heart drug but has really helped reduce frequency and severity of my headaches. When I get in a cycle of migraines that won't quit, three days of high dose Prednisone (a steroid) usually brings it to an end. I hope you find something soon that is effective and remember, you are not alone. There are millions of migraine sufferers who can relate to you and what you are going through. It will get better, it just takes time.
brian-t Member
Hi Caitlyn, I'm seeing lots of good advice already but one thing I feel I need to add. I know this will be especially hard for someone your age but you need to realize right now, you must be in charge of fighting this curse. Your doctors, family and friends are your support system but you are the one to make the decisions about what is right for you. If you form a battle plan using good research from the internet about what medicine, vitamins, herbal remedies and diets have a good chance of helping you and then lay out a time line of what you will try and when you will decide if the benefits of a regimen outweigh the costs. Document everything and go over it with your doctor(s), and remember your Dr's are on a trial basis also, if they do not perform to your realistic expectations fire them. Wasting time on Dr's who don't listen to you is stupid, you shouldn't expect one Dr to get you through this, that is extremely rare. Once you accept the fact that this is a war and you are the general in charge and have a battle plan you are committed to your feelings of hopelessness will fade. Fight this bastard tooth and nail, and know my prayers are with you.
vickig Member
Hi Caitlyn, I'm so glad that you found your way here. The comments that people have made in response to your letter contain some great advice, especially about finding a neuro who specializes in headaches. There is also a very good letter here on this site that was written to explain migraine to those in your life who just don't understand what migraine is like. I would like to add just a few things to the advice here. First, preventive meds that don't work so great by themselves can work much better in combination with another med. I take a combination of Depakote and an antidepressant. There are hundreds, maybe thousands, of combinations and it can take some trial and error to find one that works for you. You didn't mention whether or not you take a triptan as a med to stop a migraine, but there are several different ones. Only one of them works for me so that is something you have to try 'til you find one that works. I also suggest that you keep a detailed headache diary to help pinpoint your triggers as well as what helps. Hormones, food, smells, and weather are just a few of the migraine triggers that you can keep track of. Since your migraines started at age 13, keeping track of your hormones might help a lot. Smells are a major trigger for me, so essential oils might be something to be careful with. Aspartame is found in many foods and can be a serious trigger for many. Something else that you might want to talk to your doctor about are rebound headaches. That can be a vicious cycle of "headache-more meds-more headache". I hope you can find some relief soon. It can take some time but it can get better!
stormborn Member
Hello, Caitlyn. I'm so sorry you are suffering so much. A while ago I dealt with the same problem you are right now. Have you ever thought of getting a chiropractic adjustment? I used to have chronic migraines that were absolutely unbearable. One day I got in a fender bender and I noticed that my shoulders and neck were hurting the next day. My boyfriend suggested going to the chiropractor to see if he could readjust my back after the whiplash from the car accident. So I decided to make an appointment. When the chiropractor gave me an adjustment, not only did my back start feeling a little better, but over time my migraines dwindled down to once a month when I used to have them three times a week. I'm not a doctor or anything, but it's possible that you have a pinched nerve or tight muscles and your brain isn't getting enough oxygen/blood and it could be triggering your migraines. It might be worth looking into. I felt so much better after that adjustment. It felt like a miracle.
esherren Member
I am reading a book called "Fighting the Migraine Epidemic". In it, no meds are used. You balance your chemistries within your body and brain to be in the correct harmony. I have had chronic daily migraines for over 20 years, and hormonal migraines since before I can remember (seems like, anyway). Anyway 40+ years of migraines, and yes, I would say they disabled me to a certain extent, but I still had kids to raise, a stressful job to work, and all else that life throws at us. I have been on every medication, both trials and FDA approved meds, none worked. Zomig manages my pain, and only Zomig, until I read this book. I now have been mostly migraine free for over a month. I still have my full quota of Zomig (I'm allowed 18/mon) from last month and it is time to refill it again. NEVER, have I ever gone the entire month without needing medications. Mostly you have to balance your sodium, potassium, and water. Check out the book, I highly recommend it. It is working for many people, and I must say, that at first I was highly skeptical, as nothing has ever worked for me, but this is working as long as I pay attention and stay on top of my chemistries. Good luck! I know exactly what you are going thru, and I hate that you are so young, and the doctors are leading you down the same path I was lead down until mine became chronic daily.
chronic-trixie Member
Hi Caitlyn, First thing to know is, you are not alone. I'm 41 and have had migraines since I was very young, becoming chronic late teens. I'd be happy to be an email buddy if you need someone to talk to going through the same issues. Keep on testing different therapies and drugs in the hope you will find a combination that works, or at least helps. x
gemsie Member
Hi. I had my first migraine when I was four. Until my mid twenties they were always the same - 12 hours of pain and vomiting. Then they increased and even with daily preventatives I would average 7 to 8 on a good month. In my late thirties they became chronic and are almost daily now even with high doses of preventatives. I can only work part time and I have a limited social life. BUT even though they are this bad and my entire life revolves around them I do believe they have taught me important lessons. It took me a long time to realise and accept this but I can't live my life at a hectic pace as others so. I must do things slowly, go to bed early, make time to relax and plan ahead. I am more understanding when people are ill or in pain as I understand what they need to hear. You could say migraines have made me a nice person! My point is that although you are really sick at the moment even if things don't improve for you or they even get worse you can still have a life worth living. Admittedly it may not be the life you imagined or the ones your friends and family have or want for you. It doesn't matter what other people who don't understand think because YOU know you are really sick and other people who are sick understand too. Make sure the people you pay attention to are the right ones for you and ignore the rest. They can't understand until it happens to them (which it may never). I really hope things do improve for you though, you must always put yourself first - you have a migraine brain and they are very sensitive and need more care than other people's xx
1. Katie M. Golden Moderator
 Gemsie, That's great advice! It can take someone a long time to get to that acceptance point and you laid it out very well. -Katie
gemsie Member
Ps I just want to add that I have tried physiotherapy, practicality all the preventatives, I see a specialist migraine neuro, alternative therapies etc. The best advice I think is to not over medicate yourself. I didn't discover sumatriptan until my mid twenties and I used it often as I didn't know any better! Although it's a godsend try not to use it more than two days a week (this is what the UK Migraine Trust advise). MOH is awful and I believe this is why my own migraines became chronic. Take care xx

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