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Sleepless nights, confusion on “diagnosis”?

Okay, so I don’t know if anyone will read this, but I suppose it’s good to vent for my own well-being. I’m a 24 year old female. I’ve had chronic migraines for a few years now, but migraines on and off since I was about 13 or so. I have a run of the mill headache just about every day. No one understands that I’m not exaggerating. I got some fire under my feet when I was about to be fired for missing too much work (either having to leave from vomiting and blacking out migraines, or calling out sick).

So first step, tell my primary care, who is a sweet doctor but just seems a little clueless. She tells me it could be my birth control, so I should try a different kind-progestrone only. Although this is a very “strict” kind in my sense. I have to take the pill at the same exact time every day-or else! I work 13 hr shifts in a hospital where I can NOT leave.

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Needless to say, I was sexual inactive for those few months since I forgot so many times! Also, no change in migraines. So then I’m told to go off birth control completely! I try it. Not that sex is the only thing in life, but it sure is enjoyable… condoms it is.

In the meantime, I make several trips to the walk-in clinic for those excruciating migraines. Nothing seems to help, but narcotics and phenergren. Knocks me out, lovely. Along the way, I actually have a migraine during office hours of the doctor, but alas, my doc is not available. I opt for the new doc to the office, who truly takes an interest in my migraines. He asks many questions I’ve never been asked before and honestly seems concerned.

I’m asked about my diet, my routine, if I’ve had an MRI, when the migraines come, etc. I’m told to write down everything I ate when I get a migraine, everything I’ve done that day, and how severe my migraines are. Also-a new diet. No cheese, chocolate, alcohol, MSG (who actually eats that anyway?) or caffeine. Ah caffeine, my best friend. I work nights-did I mention that? 6:30 pm to 7:30 am. Oh mountain dew, farewell!

I found that perhaps some of the foods were in fact triggers, because I slipped up with the processed foods a bit. But still, migraines continue. I am sent to a neurologist, which takes MONTHS for an appointment. I go, and the neurologist takes me to her office and asks me to explain my “headaches” and tells me I have common migraines, just take excedrin or ibuprofen. I stop her and say no, that does not work, is there not anything else that could possibly help?? I tell her about what I’ve read online. I read about Topamax and daily use at the right dose could help many migraine sufferers. She tells me if I really want to, I can try it. pshhh

Anyway, I start the Topamax. What hellish side effects. I can’t feel my feet! I wake up with no feeling in my fingers and toes. headaches continue…but migraines lessen? I go to my follow-up appointment with the non-interested neurologist. I scheduled for 8:15 am-earliest possible appointment. I go after working all night with heavy eyelids and wait. I’m taken back to the exam room and get the vitals taken and wait. A nurse comes back and says “Oh not much longer nicole! Do you want a soda or something while you wait?” I say no (given up on those!) and then I look down at my phone to see why she was checking back up again…it’s after 10!!! I fell asleep in the room and yet no doctor yet? I poke my head out and ask when the doctor might be there, I haven’t slept in 24 hours and have to work again in about 8. They reply “she just called, she’s on her way”. WHAT?? the doctor isn’t even there. I storm out. F that.

Back to square one? I talk to my doc again-the one who actually took interest. He upped the Topamax and suggested an anti-anxiety med as well. More meds. I think? whatever helps. Meanwhile, My boyfriend and I have a 16 month old baby girl with mental delays and behavioral issues dropped in our laps. We get custody of his niece which is the most stressful experience of my life. I watch her all day, taking her to doctor’s appointments once a week for weight checks (she was severally malnourished as well) once a week behavioral therapy class, and once a week speech therapy class. Not to mention social services visiting our apartment, and family on our backs. The migraines became severe at this point-but I had no time for myself. We both had to work overtime, my boyfriend trying to finish school and all the social service appointments to make.

After baby girl went back to her felon drug addicted mother and soon to be out of prison felon father (neither of whom had jobs, cars, licenses, or a place to live) I fell apart. This little girl was my life for 7 months. Her mother did nothing but cause trouble while I took care of her, taught her everything and here baby girl was being handed back with perks! They were allowed food stamps back (she had sold them previously! I couldn’t get them!) They were given FREE FULL TIME childcare! I couldn’t get approved for childcare! Neither one even had a job! After then, migraines got worse.

After a new symptom, (excruciating neck pain with my pounding headache and vomiting), my doctor schedules an MRI. I’m excited, only because maybe this holds an answer! I get the MRI (not a fun experience, and quite cold as well). I had gone early in the morning, and then head to bed (since I had worked all night). At 6:30 pm the primary care doc calls, I miss it. The nurse says “nicole, we got your MRI results, and them mumbles something about benign possible questionable…” WHAT?!?!!? I call back in a panic, but get voicemail (after hours-duh!) and call my mom. The nurse calls back and says it was a “venous menenginoma in right frontal something and another questionable mass”. This scares the crap out of me.

I head to a new neurologist. I hand her my MRI disc and she says she doesn’t need to see it, she doesn’t know how to read them anyway. WHAT? a neurologist that can’t read an MRI?? She tells me it’s nothing. I shouldn’t have gotten it done, it just comes up with things. She tells me she is going to start me on Topamax. I say – I’ve been on that, it hasn’t worked (did she even read my file?) “Oh, okay, we’ll up your dose”. I roll my eyes and say fine. But what about when I get a migraine? She says oh, just take excedrin. If that worked, would I be sitting there??? So she prescribes another med for the pain. I ask what’s in it and why it might work better. She seems confused and starts looking it up in the computer. Whatever.

I call in my prescriptions to be filled so I can pick them up when I get off work in the morning. When I call that morning to check to see if they’re ready, I’m informed that the med she prescribed for the pain-taken off the market because it was deemed unsafe for use. wow. Just what I need. I already had no faith in her. I call and tell her nurse who informs me the doc said to take ibuprofen instead. Gee, thanks.

At this point, I’ve given up. Honestly. I’ve already separated myself from friends and family so far away that my only partner in crime is my boyfriend. I decide to get off all the meds. I can’t spend my whole life on these meds, they don’t help anyway. I’m sure they’re all unsafe for pregnancy, and I do want to have a family eventually.

I suppose my story finally ends here. It was long and too wordy I’m sure. But here I am, awake at 3 30 am because this major headache hasn’t tapered off in a week. Sure the Excedrin helps slightly-makes sure it doesn’t turn into a full blown blowing chunks curled up in the fetal position with pillows over my head and my boyfriend rubbing my back migraine. So i scour the internet for answers while I have no health coverage anymore. I’m hoping that moving away from the stressful family dynamics and the incredibly depressing job (oncology/hospice) will help. One can only hope.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Linda Barham Nabors
    8 years ago

    I get your story! Have been there too. I have no 2 cents for you because I know that you have heard your share and most are worthless. I have a headache everyday too and I believe in pain meds (so shoot me). I look for hope in my faith each day and believe tomorrow will be better. You said it, “One can only hope”.

  • Renee Starkey
    8 years ago

    Ah you poor thing! Try to stop all pain medications, even Excedrin and Ibuprofen. They all cause rebound headaches…You know, the kind that never go away? Botox has been approved for the use in migraine headaches, so you may want to try that. I see you don’t have health coverage anymore, and that is sad. Anyway, it helps if you can afford to do it. I hope you find a neurologist that knows how to read your chart and an MRI. I really think the pain meds exacerbate the headaches. Just a thought for you.

  • Holly Clark
    8 years ago

    I have many of the same terrible symptoms! I know the pain you are feeling! Since I was 12, I’ve had a headache every single day of my life. I am 17 and the currrent explanation the doctors have given me is that apparently I have chronic daily headache syndrome, common in stressed out teen girls. Whatever! The only thing that changes is the intensity. Around 13 I started having migraines. They steadily increased in both frequency and intensity until I was 16, and they have plateaued to occuring at least three times a month, sometimes more. My migraines are as intense as the ones you described, so I don’t have to explain the pain and debilitation. I have been perscribed every migraine medicine under the sun, including Topamax, and none have worked. Some, like topamax, simply didn’t do anything, while others, like Imatrex, gave me sever side effects like worse headaches (great) and bad flushing. The only thing that takes away the pain is narcotics, you’re so right, but whenever I am mercifully perscribed them to get through a migraine, the rebound headaches are almost as bad as the original migraine! I currently have a perscription for Phenagrin, which, like you said, knocks you out. I take it when I absolutely can’t get through, and it only works because it puts you to sleep, not because it taes the migraines away. I also, like you, have chronic pain in my neck that becomes unbearable during a migraine. Nothing helps. You know the desperation we both feel. Oh, and stress for me seems only to make it worse, but relieving stress doesn’t relieve the migraines. For example, during the summer I went on vacation to Fl and I still suffered from the daily headaches and even got a migraine there! That was even more stressful!

  • Julie Clark
    8 years ago

    Remember doctors are human. Find a good neurologist that includes you in decisions about your medical care. Try to eliminate some stress. It helps a lot.

  • Denise Friend Powers
    8 years ago

    I have had these since I was 12 did the Topamax don’t work. My Dr. gets mad at me said I take too much meds but I take Fiornal w/cod in the morning and by the end of the day I take Maxalt and they help me I would try these and I also take Inderal as a preventative.

  • Angee Haney
    8 years ago

    I feel your pain dear. I take 8-12 excedrin migraines a day! I’ve had MRI’s and been put on every med there is, nothing has worked. I have them daily, waking up with one & going to bed with one everyday. I hope you find your relief.

  • Jennifer Brennan Chace
    8 years ago

    Have you looked into Neuromuscular Dentistry? Check

  • Rebecca Hutchinson
    8 years ago

    Have you ever tried Relpax? That is the only thing I found that works for me. Give it a try and see how it works for you. I am just like you. I have tried everything out there. I do take Topamax 2x a day. Every time the headaches get worse the first thing the Dr.s say is here is a another pill. Wrong! I have seen a non-interested neurologist also. I will never go and see another one of those. Please let me know if any of this helps you out.

  • Sarah Gearing
    8 years ago

    Nicole, that is awful.. It’s such a rough road we walk, with little understanding from the “experts”.. If I were you I would get another Neuro to look at your MRI results or at least get a Doc to explain it fully. I currently have a crap, uninterested neuro myself who hasn’t even had the curtosy to give me the follow up appointment promised or discharge me so I can see someone who is interested! Good luck hun!

  • Theresa Beauchamp
    8 years ago

    I’m so sorry to hear that you are having such a rough time with your doctors! We pay them for their services and half of them don’t even care because they know nothing about migraines. You need to see a neurologist that actually specializes in headaches/migraines. Sounds like all the neurologists you’ve seen so far haven’t even tried to listen to the information you were giving them.

    Best of luck on your road to treatment and feeling better. Make sure you talk to your good doc about stopping the Topamax since it can be quite nasty if you stop it cold turkey.

  • Carrie Alpert
    8 years ago

    I echo Theresa’s sentiments that you need to connect with a neurologist who specializes in migraine care, that word care is key. Topomax is indeed not for everyone but my migraines would be unmanageable without the drug. There are other preventatives out there as well as ways to manage your migraines. Best of Luck and know that you have a support system *here*

  • Sara Coon
    8 years ago

    I understand you completely. I suffer from the same. I have major headaches everyday, up all night because of the pain I cant sleep. I been haveing them for years and the only time I didn’t have them was when I was prego. and I not going to keep geting knocked up to slove my head problems. so I feel for you dear and good luck..

  • Bambina
    8 years ago

    Your story sounds very similar to mine. Please looked up migraine surgery by Dr. Bahman Guyuron in Lyndhurst, Ohio. He is world renown for this. I’ll be having this procedure next month because the drugs are making me sicker, the migraines impair my vision, and I’ve been off work since May. (I am also an RN working 12 hour shifts on nights. 7pm-7am.) My insurance may not pay for the surgery, but when you take into consideration the amount of work I lose to migraines and medication complications, the surgery should pay for itself in the long run. Good luck to you.

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