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Feel Like I Am In Prison

I first started getting migraines when I was approximately 5 years old, part of my inheritance I guess since my mother and her sister have them and their mother had them. To begin with I only had a migraine a couple times per week accompanied by severe Nausea.

As I got older my migraines increased not only in number but in severity, by mid high school I was missing 30 to 50 days of school per year and was nearly held back because of days missed. I managed to fight and claw my way through school and started to work for my fathers company which with my migraines being 3 to 4 days per week was really my only option. By this point in life I had already tried every over the counter drug made and had already been to many doctors who either dismissed me outright or tried me on a number of different meds to try to stave off future headaches. This was also about the time I started taking opioids on a regular basis.

By the time I was 25 or so give or take a year or 2 I was landing in the hospital ER about once every week and a half on average to get a shot of Demerol which worked for a while then it was on to Morphine. This is how it remained for about 5 years, and during those 5 years my life away from my house started to diminish. During this time span I was going to several different specialists in several different fields, and they tried every preventative medication that they could think of which included anything for blood pressure, seizures, beta blockers, muscle relaxants, and a few that were actually made for migraines.

I am now 40 and my life has been put entirely on hold for the last 15 years I leave home only several times per year at this point. These rare trips are only for doctors appointments at a pain specialist and I also go to MAYO clinic in Rochester. I currently take one of the following Zomig, Maxalt, Relpax, Amerge with 500 mg of Naproxen and Promethazine for the pain, which means every day. I am also on a blood pressure med to try to stop the throbbing Lamictal for depression Clonazapam for anxiety Omeprazole for my poor stomach and Vitamin D3 to help with lack of sun. I now have migraines all but 5 or so days per year, and as you can imagine am on disability. I simply have no idea what to do I have no hope left in me. All of my dreams of having a family college etc are slipping away since I am completely unable to leave the house. I can’t really come to grips with it. Any suggestions would be most appreciated, and sorry for the terrible grammar and spelling my brain is currently in a state of mush.

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Comments

  • BrownT
    10 months ago

    Hi Zander
    Migraines can be so life draining. Sometimes I wonder how I get through a day. Migraines can be so unfair. It took me many years to come to terms with my migraines. My mother had them and was often absent. I promised myself that I would not be so disabled when I grew up. Migraines do not give any choices. My siblings do not suffer with one not even getting headaches.
    Looking back makes me wonder how I have gotten this far. My life has shrunk with few friends and many lost opportunities. What am I here for if only to suffer? I have been through some tough patches when I lost hope. To help me through I would set a goal for the day like walking to the coffee shop or spending twenty minutes sitting on the porch. Some days it was to take a shower or make some toast. There were days these seemed too ambitious. I had to learn to forgive myself for not measuring up to what I thought I should be or be doing.
    It is enough to get through the day. I will worry about tomorrow when it comes. I cannot be who or what I hoped to be. I can only make it through today.
    You sound like you have been through more than anyone should be expected to manage. Forgive yourself. Be what you can be now and get through the day. Tomorrow will come and you will get through it too. Appreciate how tough and determined you are and what you have learned to cope with. …more than anyone should be expected to. Help others when you can, one day at a time

  • Luvmyfam22
    11 months ago

    Hi there Zander ~
    I am praying now that one of these new drugs will help you in some way to give you relief, and some peace of mind at the same time. I am so grateful that you have found this safe haven that is full of genuinely caring, concerned people! You truly have unearthed a jewel!! This is quite the journey and I wish you the best. I have been on this ride for quite some time ~ several medications later and a few friends lighter. But!!! The friends that have stuck with me through this are my true-blues!! And, I have learned a lot about just how strong I am and just how much I have to give even when my tank is past “E”. This group will help and support you to find your best you through your journey. If you don’t mind…I know it is sometimes frustrating to get suggestion after suggestion, but if you wouldn’t mind me making one. I know we are all different as are our triggers. In the beginning when I was searching for the ’cause’ of my migraines, a doctor gave me the wrong tongue test. But I had sent it in and decided to get the results anyway. Well, it revealed I was intolerant to several foods one was soy & MSG. I instantly took them out of my diet. I found out they are MAJOR triggers for me. Have you been able to do any type of holistic food testing? Just a thought. When I had an MD do it said I was clear…NO, NO, NO…within 20 of ingesting soy…I am in big trouble!!! Hope this help my friend and best wishes!!

  • Zander author
    11 months ago

    I would like to thank you all for your support, it is very nice to be able to speak to other people not only about the hardships of migraines, but also compare and possibly learn something new to try. To those that have asked. No I have never heard of Zembrace which is odd since I am nearly a walking medication encyclopedia, is it new? I have been tested for all allergies and I am not allergic to anything, or at least that is what the tests showed. I have also tried Botox I am going in for my 5th round of it in approximately another month hopefully it will help. Fingers crossed. I am also looking through and filling out the paper work to try one of the new drugs that is a once per month shot, Aimovig I believe is what it is called, so hopefully something helps. Again thank you all for replying I am not sure what I expected but I didn’t expect this kind of support it is humbling and very nice to have people that care.

  • Kpandes
    11 months ago

    This is just another note of support – thank you for sharing your difficult story with us, and I applaud you for making it another day. I know how hard it is for me when I’m housebound from migraine, and that doesn’t even compare to your experience.

    I agree with comments from one of the moderators about “true” migraine doctors…. I spent years talking with regular doctors and neurologists when my migraines started after the birth of my child. Unfortunately, I believe that their lack of knowledge led to mistreatment such that my “episodic” migraines turned chronic. I feel like I hear a similar experience in your description of your early years…. I hope you have found a great health partner since then.

  • sick-of-it
    11 months ago

    Dear Xander,
    You are very brave. You took a huge first step toward getting out of your prison by reaching out to a community of people with experiences much like yours. I applaud you because when I did it, I immediately wanted to take it all back and hide my thoughts from the world all over again.
    I feel daily that I am on a hamster wheel. I go to work and try not to get sick, so that I can make money. The money and the job pay for insurance, medicine and doctors. All of those things keep me propped up enough so that I am able to keep going to work. And thus the wheel keeps turning. I have no friends or relatives nearby. Honestly, I feel like I’ve kinda burned through all of my currency with them. Does that make sense? So I try to keep any phone calls as light as possible.
    I do want you to know one thing. You are not writing into a void. I felt that way and I don’t want you to. I am a real person who is also struggling on a day to day basis. Everyone who writes to you is. No. They can’t come to your house like real friends, but if you keep writing, they’ll support you with information that most of our 3-D friends could never provide. Some people are even great at seeing the ‘funny’ side of migraines. And that’s hard! I wish you every bit of comfort and peace I have to offer.

  • Zander author
    11 months ago

    I am very withdrawn anymore so I did just as you did in wanting to delete it all after I posted it. I am not used to finding other people that actually understand what I am going through, I would not wish these migraines on my worst enemy but I do wish that others understood because I have been looked on as a liar and lazy nearly all my life. It is very hard to cope with having friends and relatives thinking that I am making up just how bad they really are. I hope that none of you have had this same experience but I suspect that you have. Thank you for the support it means the world to me to know there are people out there that understand.

  • Holly Baddour moderator
    11 months ago

    What a beautiful and supportive response, @sick-of-it. A great example of what this community is capable of being- and of giving to one another. Thank you for taking the time to cut down on the isolation that so often goes hand in hand with migraine.

    @zander – what a long and challenging journey. Thank you for sharing. Many of us have similar stories to share. You are not alone in this. I’ll echo what Nancy said below regarding encouraging you to seek out a migraine specialist (or a new one, if you’re already working with one). There are a couple of exciting newly FDA-approved migraine treatments that might be worth discussing with your specialist at your next appointment.

    I, like you, have had chronic migraine for decades and am disabled. I have hope in what these treatments have to offer. When you are feeling well enough to do some reading, perhaps check out some of the articles we have about Gammacore: https://migraine.com/?s=Gammacore+ and CGRP: https://migraine.com/?s=CGRP. I’m assuming you’ve already tried Botox as it sounds like you definitely have chronic migraine? You didn’t mention it, but it is also FDA approved specifically for chronic migraine.

    It is of course unlikely that any of these treatments will be a magic end-all cure (one can hope!), but perhaps in some combination, we will each find in increase in quality of life.

    Again, so glad you shared your story and that you are a part of our community!

  • libbyjaine
    11 months ago

    Zander- Thank you for sharing your story. I, too, suffer from debilitating migraines (though not as disabling as yours) and have since the age of 6. I was repeatedly misdiagnosed, which made things all the worse and I’ve been in and out of the hospital as well. I can certainly relate to your story. Have you ever tried Zembrace? That combined with taking Valium and Dramamine during an episode can sometimes help me. I’ve also learned that I have a multitude of food allergies that can set off a migraine for me. Have you ever been allergy tested?

  • Nancy Harris Bonk moderator
    11 months ago

    Hi Zander,

    Thank you for reaching out and sharing your difficult journey with us. I wanted to let you know you’re not alone – there are millions of us living with debilitating chronic migraine disease – we are here for you.

    I’d like to discuss triggers and “true” migraine/headache experts. I’ll start with triggers. Have you been able to identify any of your migraine triggers? Triggers include, but are not limited to an irregular sleep schedule and/or sleep issue, and not only sleep apnea, certain foods, changes in the barometric pressure, skipping meals, smoking, alcohol, dehydration, odors, lights, sounds, and many other things. Some of the things we can avoid, while others we cannot. The best way to find out what out triggers are is to keep a detailed migraine diary for a few months, especially if you haven’t done so in a while. Another problem we can run into is triggers can change over time. Let me share this information on triggers and how to keep a migraine diary I hope helps; an interesting study done a few years ago on trigger; https://migraine.com/blog/top-10-triggers-according-new-research/ and https://migraine.com/migraine-triggers/ and
    https://migraine.com/blog/keeping-migraine-diary-basics/.

    Doctors! You’ve probably seen your share of doctors, I know I have. I’m currently working with my 5th true migraine/headache expert and think I may be getting somewhere. A true migraine/headache expert is a doctor who is board certified in headache medicine, which is different than being certified in neurology. Neurologists may be fine doctors, but have a hard time being experts in one area because they treat so many other diseases such as epilepsy, multiple sclerosis, stroke, Parkinson’s and others. true migraine/headache expert treat migraine and headache disorders all day, every day – they are THE experts. When you get a chance take a look at this information on how these doctors are different and how to find one: http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    I’m going to stop now as I’ve given you a lot of information. Please let me know what you think and how I can help!
    Nancy

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