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Diagnosis of Migraine & Headache Types

Day 14 of my first migraine, and I feel helpless.

  • By Martinan

    I woke up with this headache two weeks ago today. I have waves of terrible pain in my temples and behind my eye, ranging from a 4 to a 9 on the “pain scale.” I’m 27 years old and otherwise healthy. I have no history of migraines.

    I’ve been to the Jefferson University ER (Philadelphia) twice and was admitted to the hospital the second time for 3 days. They did a CT scan and MRI, and everything came back normal. They tried a ton of different drugs that had no effect on the headache: Reglan/Benadryl/toradol; imitrex; Fioricet; Percocet/Valium; compazine/toradol; Thorazine; IV ibuprofen.

    I was released last Thursday, after the doctors “broke” the migraine using around-the-clock doses of a Benadryl/depakote/compazine cocktail (which basically just knocked me out for 3 days and left the pain at about a 3–i.e. I was too out of it to know which way was up). That was 4 days ago. They diagnosed me with an intractable migraine and sent me home with 6 pills each of compazine and naproxen, telling me that I “shouldn’t really need them because the worst was over.” Those meds are long gone and the headache has returned full force. I can’t sleep, I can’t go to work, and I don’t know what to do.

    I have a follow-up appt with my GP tomorrow (who has been pretty much useless throughout this process), and I’m considering refusing to leave her office until she gets me an appt with a headache specialist asap. (The neurologist I saw at Jefferson–one of the guys that is actually listed on the national registry as a headache specialist–told me that the waiting list at the Jefferson headache clinic is about THREE MONTHS long. As I’m sure you can understand, I can’t wait 3 months.) The last thing I want to do is go back to the ER, but the pain is only getting worse. Suggestions?

    On a related note, I have no idea what to tell my boss. I think he will try to make accommodations for me, but I have absolutely no idea what those accommodations should be. This headache could end tomorrow or next year, I just have no idea. Do I need to look into short-term disability? I’ve used all of my sick days over the last two weeks.

    Finally, and I probably should have said this first , thank you for starting this website. I came across one of your forums about migraines and ER visits and felt so much better knowing that I wasn’t crazy for being confused by how they treated me. (I understand that I’m not having a heart attack, but, hey, I’m in a lot of pain over here…please try to help me!)

    Any suggestions or advice would be greatly appreciated. Thank you!

    (Did I mention that I can’t sleep? Does anyone else have this problem?? It’s currently 3:02 a.m.)

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  • By Tammy Rome

    I am so sorry to hear that your pain continues. It sounds like you are on the right course with trying to get in to Jefferson. They do good work there – you’d be in very good hands. As difficult as it may be, it would be worth the wait to finally get there. Continued pain is no good (yet may not be resolved by another ER visit). If I were in your position, I’d keep calling my doctor until I got some kind of resolution.

    As far as your job goes, do you have FMLA? That would protect your job until you are well enough to return. It doesn’t help with a paycheck though. Do you have short-term disability as part of your benefits? It might be worth looking into your options by calling your HR office. Obviously, it doesn’t sound like you can work very well at the moment. Here is a nice article that might help clarify your options: https://migraine.com/blog/what-are-some-financial-options-for-people-with-migraines-who-are-unable-to-work/.

    As for sleep…yeah, almost all of us have that challenge when the pain is high and/or relentless. Try your best to go to bed and get up at the same time each day. These posts might help you with some ideas on how to cope.
    https://migraine.com/blog/migraine-triggers-sleep-2/
    https://migraine.com/blog/migraine-triggers-sleep-1/
    https://migraine.com/blog/sleeping-tips/

    Take care of yourself. Please write back and let us know how things work out.

    Tammy

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  • By Martinan

    Thanks for your reply, Tammy. The pain continued to get worse after I wrote my post last night, so I went to my GP’s office when they opened at 8:30 this morning. (I didn’t want to go back to the ER, because I know that they don’t know what to do with me. I just wanted my GP to give me a neuro recommendation and/or call their office and help me get in faster.) Long story short, my GP wasn’t going to be in until 1 p.m. and asked the other doctors in her practice if they would see me/provide the recommendation. The receptionist came back out and told me that they were both too busy to see me and that I needed to go to the ER (for the third time in a week). Needless to say, there were tears. I still can’t believe that neither of them could even take 2 minutes to speak to me. I will be looking for a new GP after all of this is over; this isn’t the first time I’ve had an experience like this unfortunately.

    I left their office and went to the headache center (which is only a few blocks away, thankfully). The receptionist was lovely and found a slot for me tomorrow afternoon with the nurse practioner (I almost cried happy tears). It isn’t an appt with a doctor, but I think it’s a close second. Based on everything I’ve read, it seems like the entire team at the headache center is very well versed in headache pain.

    That being said, suggestions on what to expect (beyond the normal intake procedure that I’ve read about via Katie Golden’s posts). Will they admit me again and attempt to “break” the headache via drug cocktails?

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  • By Martinan

    They’ve diagnosed me with NDPH (tentatively as I haven’t hit the 3 month mark. I’m still kind of in shock. After my last post, I was admitted to Jefferson Methodist by the doctors at the headache clinic. They threw a ton of different drug combinations at it, but nothing broke it completely. They sent me home at a pain level of 2 and I have been all over the board since getting home (they also sent me home with half of the pharmacy and instructions about what to take when). Nothing truly brings the pain down to a zero though. I have taken sick leave for the last 3 weeks, but have to go back to work on Monday and just don’t know how to make this work. I’m trying to learn to function with constant pain, but it is so frustrating. I also don’t know what the future holds, which is terrifying. None of the research I’ve done about NDPH seems all that hopeful.

    Thoughts?

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  • By Tammy Rome

    I am so sorry you are so discouraged. NDPH is a relatively new diagnosis. It’s not that it hasn’t existed for a long time, just that headache specialists are just now recognizing it as a separate disorder with its own unique symptom set and treatment. Because it is newly recognized, treatment is even more difficult. Just remember to be careful about how often you take pain medication so you don’t develop medication overuse headache on top of the NDPH.

    Maybe these links will help?

    https://migraine.com/blog/new-daily-persistent-headache/
    http://www.achenet.org/news/ndph_what_is_this/

    Hang in there. You might want to consider joining our forums to get the extra support you will need as you are going through treatment trials. You can find it at http://www.migraine.com/forums.

    Tammy

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