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Living with daily chronic migraines going on 4 years

I’m a 30 year old male living in Northern California.
I’ve been living with a constant migraine since I was 26.
Before then I would be the type to have multiple jobs, and go out to clubs and parties tues-sat. I was outgoing and the opposite of what I am now, a homebody.

My story begins in 2004.
I didn’t even remember that I started getting migraines until an old coworker had to remind me I was going through them – that’s how blurred my pain has become to me.

From 2004-2011 I was able to work through my headaches and lead a somewhat normal life.

My migraines started becoming daily in the summer of 2011 and have persisted til this present day.

I had to take leave from my job at the TSA in summer of 2011 – until they finally let me go in Jan. 2012.

I’ve had an MRI in 2012 which showed that there was nothing wrong with me.
I’ve seen a neurologist and so far I’ve been seen by the last 2 directors of UCSF Headache center.

Since I started getting daily chronic migraines I’ve lost track of the various names of the drugs that I’ve taken. All I can say is that visually – because I threw them out about 6 months ago – I was able to throw away 2 full paper bags full of pill bottles.

I’ve also gone through 2 rounds of Botox, a hospital stay with an IV drip of DHE, nerve blockers, acupuncture and deep tissue scalp massages.

At the moment that’s all I remember. Nothing has relieved my pain in the years since this has become constant.

By the grace of God I have loving parents who have allowed me to stay under their roof rent free. Without them I would have no idea where I’d be. But I’m not sure if they will ever understand the pain that I’m in. Or the anxiety that has come with it.

I’ve been seeing a therapist to deal with my situation.

The last few years I’d say from 2012-2014 I’ve been lost. Spent much of that time in bed, unwilling or unable to function like a normal human being.

2015 came and I think something has clicked in me that I’ve started to have enough of lying on my back.

I had decided I wanted to go to Wrestlemania for my 30th birthday in March. I had never been to an event of that nature so I figured it was something I could cross off my bucket list.

In preparation for the 80,000+ people attended event – I had gone to two Golden State Warrior basketball games in Feb as sort of practice or preparation to get used to the crowd of 19,000+.

For each of these events I went, had lots of fun. But I paid the price – came with at least 5 days each of complete pain and downtime. I liken my downtime as my video game bar being drained and having to take the time to refuel my life bar.

Also I went on flights to Seattle and New Jersey during times in February and April. I also have upcoming trips this year because I have been invited to 3 weddings – in New Jersey, Hawaii and Seattle.
Plane flights I’ve noticed also effect my migraine. Ascending and actual flying are fine as they don’t exasperate my migraine further – but when the plane descends it does. My feeling is it’s because of the air pressure changing, who knows.

I write about my travel because before the times I went to Seattle and New Jersey in Feb and April, I had anxiety/panic attacks in Feb. and March.

Upon telling my therapist about my anxiety attacks he suggested I look into educating myself about getting a cannabis card. Not so much for my pain, although that could be an option for pain management – but to manage my anxiety.
I had spoken with the physical therapists who were doing my deep scalp tissue massages about it – and they didn’t see an issue if I was in the pain that I was in.

I brought the subject up to the doctor at UCSF and while he personally cannot advocate for the cannabis card issue – he said he had been lobbying for cannabis study with some pushback within that organization. He also suggested looking into CBD treatment.

All throughout this time, my parents have been right there with me in every doctor session – excluding my therapy.
They seemed poised to being open to the idea of being accepting towards exploring the cannabis card route.

I had an appointment scheduled with a doctor on May 28 to meet with a doctor who could get me a card. But then my parents decided that they didn’t want me to get a card for their personal reasons a day and a half before the meeting was supposed to take place. I told them I would reschedule and curb the conversation til a later date.

I understand some of their hesitation – in my earlier years I experimented with substances – but I feel that given what I’ve been going through the last few years and the changes that I’m trying to make this year that I’m a changed person. And I would have no issues going forward.

Going through this has literally taken chunks out of me. I do not feel whole. The anxiety attacks kind of were a shock to my system that I need extra help that talking to somebody wouldn’t help. And I’m absolutely sick of pills at this point.

I’m not exactly sure what I should do.
On one hand I want to respect my parents as I’m living under their roof rent free – but then I also am suffering mightily as well with events on the horizon and I’m not certain I can handle them all by myself.

I’m not exactly seeking their permission but I would like them to understand where I’m coming from and understand my situation.

I’m wondering if anybody can help me on what I can/should do?

I’m sorry for writing such a long story but I needed to get this off my chest..

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Comments

  • Katie M. Golden moderator
    4 years ago

    Provenbelief,
    Thank you so much for sharing your story. You’ve definitely been through a lot and tried multiple options to help manage your pain. I try to live life as much as I can, even though I know that I may pay for it for a few days after a big event. I just don’t want life to pass me by. I’m excited that you have realized that being proactive gives you a feeling of more control over your disease.

    As far as Medical Marijuana goes, I think you just need to educate your parents so that they are comfortable. Like your UCSF doc said, there really haven’t been too many studies on Marijuana and Migraines, however there are studies on anxiety and Marijuana. Below, I’ve included a few links about Marijuana and Migraines as well as Patient Perspectives from people who do use it. These might be good resources to share with your parents:

    http://migraine.com/blog/patient-perspectives-medical-marijuana/
    http://migraine.com/blog/medical-marijuana-migraine/
    http://migraine.com/blog/patient-perspectives-medical/

    Additionally, there is a Marijuana Forum on our site that you might want to visit. You could ask others who have tried it what their experience has been:
    http://migraine.com/topic/marijuana/#post-55441

    I hope that these resources help, but feel free to ask additional questions.

    Best Wishes!
    -Katie
    Migraine.com Moderator

  • Darwin's Knickers
    4 years ago

    I also live in NOR-CAL Humboldt specifically. My specialists took years to decide to send me to the city and see an expert. I faint from the pain and crack my face. Nobody could figure it out. Finally my in home health nurse hit on two helpful possibilities. 1) I have more than one thing happening at once. and 2) My migraine is probably Basilar type migraines. The specialist confirmed the diagnosis. My pain hits my eyes and the back of my head. Like knitting needles piecing my eyes into the back of my head. I am takning calcium blockers. I only take up to 30 hydrocdone and ten hydromophone in a month. I space them out so i can control rebound headaches and addiction. Life is way better now but I am still a prisoner when the sun is out and I am feeling like i could faint. The pain is so intense i pass out and vomit . We are afraid I will choke in my own vomit and die. Also because of the amnesia surrounding my attacks I have installed a camera system in and out of my house. I get to see how i behave and save guard the house so I can stop needing stitches. Maybe you have basilar type. it is hard to diagnose but sounds like they have found nothing trying it their way.

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