At a loss of options

Hi everyone.

I’m a 27 year old girl living with migraines. It all started almost three years ago when i had really bad headaches for a week. It got so bad i went in to the ER and was submitted and tested for meningitous. They did a spinal Tap but the person doing it hit the wrong spot causing me to loose more spinal fluid than intended. This was the beginning of almost three years in hell. They did a blood patch transfer and it worked. I was pain free until one day I wasn’t.

All the pain came rushing back and I was diagnosed with intracranial hypertension, which just recently, has proven to be a misdiagnosis. I finally got to see a specialist which stated that I suffer from chronic stress headaches with some sort of migraine (possibly clusters) topping this quite often.

My problem now is that this pain is so bad I’m not able to go to work anymore. I have a chronic headache which intensifies with stress or emotions which are quite impossible to avoid when working in customer service. The migraine attacks are becoming more severe and more often and I feel like my life is just wasting away in my hands. All my doctors tell me to just hang on and wait till they can figure out what is wrong, but there must be something?? Have anyone had problems going to work and/or had to change career paths due to migraines?

I realize I havent had this as long as many in these forums but please if anyone has any advice please don’t hesitate to share.
Thanks for reading 🙂

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Comments

View Comments (8)
  • Tammy Rome
    2 years ago

    I’m so sorry to hear that you are struggling so much. You will find that you are not alone in not being able to work or needing to find a new line of work.

    You mentioned that you are seeing a specialist, but did not say what kind. A true headache specialist will use the International Classification of Headache Disorders to diagnose headache disorders. Based on your description of their early guesses, I have to wonder if your specialist is truly a board certified headache specialist as there is no such diagnosis as “stress headache”. You might want to double-check against this list of those doctors who are officially board certifies in headache medicine. https://www.ucns.org/globals/axon/assets/10300.pdf

  • Tamara
    2 years ago

    I am in the exact same situation as you. 28 years old, migraines that recently went chronic and it’s becoming harder and harder to work (or do anything). I am single and own a house too so it’s getting very stressed.

    I made an agreement with my boss that I was to go down to part time (half days to full days depending on how I feel and if I have to skip a day (or 3 it’s all good). At this point I’m using my credit line each month to help pay for food, meds, mortgage etc.

    I have an appointment next week at a local career center to discuss my options … If I should try another job or if there is anything I can do to boost my income. I’ve even stopped my online courses that we’re going to lead to my dream job.

    Every day like yesterday when I spend the entire day in bed …. I question what’s the point? at this point my entire life is trying to lower the pain, sleeping properly, eating properly etc – nothing meaningful to the rest of society.

    I am in the process of applying to foster dogs – that way I have a daily “goal” and reason to get up and move. That is helping me, hopefully they will let me!

  • DonnaFA moderator
    2 years ago

    Hi, Tamara, thanks for sharing your story. It’s wonderful that your boss has made flexible accommodation for you to be able to keep your job. You might like to check with Canada Mortgage and Housing Corporation for information and eligibility requirements for housing subsidies. You may also be eligible for assistance with utilities through the Low-Income Energy Assistance Program (LEAP) in your municipality.

    Best of luck on your foster application! Fostering is a wonderful and selfless gift. I hope you hear something soon.

    Thanks for being here, keep us updated! -All Best, Donna (Migraine.com team)

  • Danielle C.
    2 years ago

    I can completely empathize with what you’re experiencing. I have daily migraines and despite being on 11 different medications, trying Botox, and having a nerve block done, nothing seems to give me relief.

    It has gotten to the point where I spend about 80% of my time resting in bed. Needless to say, doing any type of work has become near impossible. I’m strongly considering trying for disability, but I’m not willing to give up the fight yet.

    Hang in there! I know it’s an extremely tough situation. The best advice I have is to not give up and embrace the good days, even if the good days are rare.

  • Brooke H moderator
    2 years ago

    Hi Danielle,

    Thank you for taking the time to share. I’m sorry that you have been going through multiple treatments and not finding relief! We appreciate that you are able to offer words of support even when not feeling well. Choosing to apply for disability can be a tough decision and only you will know what’s right for you. I thought you may find this article to be of interest: https://migraine.com/blog/disability-means-not-mean/. Please come here anytime to post or receive support!

    Warmly,
    Brooke (Migraine.com team)

  • thalia88
    2 years ago

    Have you tried the Cefaly device? I was suffering from daily migraines with weekly urgent care visits for iv cocktails and at least two ER visits along with a few nerve blocks each month. I take daily meds and would use a combination of sumavel and zomig nasal spray as abortive meds. In June I traveled to the Mayo clinic for an appt and they diagnosed me with medication overuse of the triptans which I was using at least 20 times a month. What I didn’t know is that they could create a rebound effect and cause a migraine themselves. For the last few months I’ve been limiting myself to only 8 triptans a month and occasional Advil. The first month was hell because I was detoxing but using the cefaly device while I had a migraine really helped. I would much rather have the feeling of the device than the pain of the migraine. Just a thought to look into the cefaly device.

  • engr15
    2 years ago

    I’m sorry that you are having such a tough time with migraines! I am currently in the same situation as my migraines are triggered by hot weather, and with climate change the intensity and frequency of my migraines is only getting worse.

    I am going to suggest two things: 1) Your health is important. So if your job is hindering your health, it is probably in your best interest to find a way to limit your triggers while at work or switch to something else until you feel better. 2)there are a lot of really awesome atypical treatments out there that I have found work better than the typical triptans/botox that you get at the doctors office. I would try searching for yoga, massage therapy, and aromatherapy programs (as well as anything else that may make sense in reducing stress) and also diet changes. By-all-means I am not a doctor, but most people I know who’ve had success with stress migraines have utilized alternative medicine. Good luck!

  • DonnaFA moderator
    2 years ago

    Hi engr15! Thanks for sharing your experience and suggestions. We do have some information on Mindfulness-Based Stress Reduction and meditation, as well as aromatherapy and plant-based medicines. As always we advise that you discuss areas of interest and desired changes to treatment protocol before making any changes.

    Thanks for reaching out to help, it’s what makes this community great! -All Best, Donna (Migraine.com team)

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