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Diagnosis help?

I'll get the obvious out of the way. Obviously you're not trained medical professionals, and even if you are you can't diagnose me over the internet. I have a lot of experience in that area (knowing that an internet opinion is just an opinion not a diagnosis). I have an appointment in a few months, my sister says it'll come fast, but when you're in pain without a working medication it seems like ages. Even a morning with level 1 or 2 pain seems like days. I just want some ideas of what I could be.

Note: I do know that I suffer from tension headaches as well. Apparently having for than one type of headache is normal for migraine sufferers.

For my migraines I experience these symptoms:
-pain (not always on the same level and varying on the scale of 1-10)
The pain feels like a pressure. Sometimes it feels like the pressure comes from inside the skull pressing outwards, and sometimes it feels like it's coming from outside the skull pressing inwards. Either way it feels like my skull will break
-Nausea (with vomiting, I have a few prescriptions for that so I can actually hold down food)
-auras and visual hallucinations (by hallucinations I mean I actually see people that aren't there and so on, but I also have the general auras as well)
-sensitivity to noise and light (obviously)
-easily annoyed with noises
-high pitched noise triggers (I can go to concerts because I listen to music with a lot of bass. It's not loud noises that bother me, but high pitched ones)
-unable to control body temperatures (I kept going from far too hot to far too cold with my last migraine. This isn't unusual)
-scent triggers (anything of a chemical scent.Natural scents like oils and incense don't bother me)
-irritability (I mean it might just be because it feels like someone is crunching my skull, but you know)
-inability to sleep (I thought it was from the pain before, but I recently realized the days before and after the migraine I sleep poorly)
-no other known triggers (like really, I'm sitting in my apartment specially designed for me so that nothing can trigger a migraine, and it comes on. This is a common occurrence)
-depression (maybe it's because of the pain and knowing there's nothing I can do to help it)

And NOTHING helps. I can't take preventatives because side effects make me unable to function for a few days (I'm told that fades after a few days, but I can't afford that). My abortive medication recently stopped working. I'm going to have to either ask for an increased dose or change medications which terrifies me. What if it doesn't work?

I really need help. As mentioned, I have a few months before my doctor visit, so I need to know where to start. I'm going to my primary care soon, and I need to know what type of migraines I'm experiencing so I can do research and figure out what I can do to help. What my primary care can do to hold me off until I go to the specialist. I REALLY can't survive with level 10 pains like the one last night for months. I couldn't even take my vitamins (used to help my other issues like magnesium deficiency and iron deficiency caused by my diet).

I'd also like to make it clear. I eat healthy. No junk food. No crap food. Occasionally cheeze-itz caused by the hunger I get from my migraine medicine, but that's it. I just don't eat meats or leafy greens, so I don't get in a couple of key nutrients from there. Other than that, it's balanced. Plus I've been trying to do better (put spinach on foods where I can even if I hate it) because health is a thing that I need to care about when I have a chronic illness that makes it so I can't hold down food.

  1. Hi faeriefate,

    Thank you for your question. I am sorry you are having such a rough time right now, that is very frustrating. Let me see what information I can give you that may be helpful.

    You're absolutely correct, getting an accurate diagnosis is vital so we can get the correct treatment and learn all we can about our particular type of headache disorder (s) and it is possible to have more than one headache disorder 🙁. Let me share information about doctors and diagnosis here;

    Before we get to actual medications and a few of my other thoughts, here is a bit of information on how to prep for your upcoming doctors visits;

    Let's move on to medications if I may. You mentioned you can't take preventive, but may need an increase is dosage? May I ask what medication you are taking? Is there any chance you are taking something every day, or nearly every day to help relieve your head pain? Here's the story - if we take pain relievers and/or migraine medications, whether they are over-the-counter or prescription, more than two to three days a week we can end up in an medication overuse headache (moh, formerly called rebound) cycle. When we have moh, our migraine attacks will be more difficult to treat and we can end up in a daily cycle of endless pain that is hard to break. You can read more about moh here; I've been here, while not fun it can be broken.

    You mentioned you can't take preventive, but may need an increase is dosage? May I ask what medication you are taking? I understand about starting new medications and experiencing unwanted potential side effects and agree no one can afford or wants to spend a few days feeling extra horrible, but here's the thing - it can take up to 90 days before we see an improvement in our migraine frequency and severity when we start new medications. Also during this time potential side effects may lessen. The problem is if we don't give each medication a fair trial, we'll never know which one would have been the medication to work. Another way to look at it is to push through a few days of unwanted side effects or to continue to spend your days in endless pain. Does that make sense?

    Good for you on the healthy eating front - that's not easy and not everyone has food triggers. Other triggers include irregular sleeping patterns, dehydration, fluctuating hormones, changes in the barometric pressure, smoking, alcohol, and many others. Many with migraine don't realize how important keeping a regular sleep schedule is. This means going to bed and waking at the same time every day, even on weekends. And speaking of sleep, if we wake with migraine pain, it may be time to have a sleep study to rule out a sleep issue. Sleep apnea is not the only issue that can impact our migraine attack frequency; restless leg syndrome, and low oxygen levels are others. Here are a few links with information on how to get a good nights sleep;

    OK, I'm going to stop now to let you digest this. Please let me know what you think.

    Happy Holidays,

    1. Thank you, Nancy!

      I take Butalbital for my migraines. Yes, I've researched it, and taking it almost daily (as I need to do) does cause rebound. The full prescription (though I'm sure you probably have heard of it) is caffeinne/acetominophen/butalbital.

      It's not that I'm not willing to give preventatives a fair chance. Hell, if yu tell me to go to a shaman and ask him to pray for me or something and that'll help I'd be the first person to book tickets to see said shaman. The point is, I'd give ANYTHING a chance. Yes, I'm desperate. Every desperate.

      The thing is, I can't really afford to miss days. I'm a college student. My professors won't accept me missing days without a doctor's note. How the hell am I supposed to go to the doctor with a migraine? I can't fucking drive. And then what am I supposed to go when I get there? I don't want anything from him. He can't do anything for me. I can't just walk into the doctor's office, say, "I have a migraine, give me a note" and leave. Doctors offices make it even worse sometimes! There's the bright lights, people coughing and sneezing, sometimes children. Doctors are loud when they call out names. They can't even dim the lights in the office for me (I've tried to ask for that).

      Then I spoke with one of my professors next semester about if I filed for disability (aka the only way I can get professors that don't have migraines to work with me), and they said the following, "I can extend test times for you if you file for disability, but I give you a week to do your homework, and that should be sufficient time." The fuck? My migraines can affect me for FOUR DAYS. With all of the other classes I have to catch up on after that plus his, a week isn't enough!

      Point is, I really am not in a place in life where I can afford to be unable to function for any amount of time. two days a month was hard enough, and it really damaged friendships of people that helped me pull through. My groups get frustrated because I'm useless with migraines.

      I know what you mean. What's worse? Not being able to function for a few days or pain? That's really a question I ask myself each time I take my migraine medicine. What's worse? The thing is, At least with the medication I'm on I can kind of function. Rebounds be damned, I'll take more when they come up. At least I can kind of work. I really am not in a place where I can be unable to function. I went to school for a whole month when I was sick for a month because I can't afford to not show up and miss whatever happens.

      When I get a stable job where I can take the time off work and use up all of my vacation and sick days in one go to take the preventative, I will, but I can't rally do that now. As much as it sucks. I know I'm being stubborn and uncooperative, but it's just my situation right now. I don't have the money to go back to college later. I barely have the money to go to college now. I just need to get it over with so I can have the money and time to take care of this issue.

      As for as triggers go, my sleep schedule is fairly normal (much to the dismay of my friends. They get SO mad when I complain about only getting 7 hours because they survive on only 3 or 5). I have to have a normal sleep schedule because I'm prone to insomnia. I used to only drink once a month, but I've been drinking more to deal with the stress. I get tension headaches from my migraines. I don't smoke. I've only had 1 good week, so I don't know if it's hormones or not. I do have a couple of other triggers. Anything that causes a headache can trigger a migraine. So one time there was a fire alarm and I couldn't find my glasses. I was forced to leave being completely blind and stay outside for an hour despite not being able to see, and THAT obviously triggered a migraine. It' just... Ugh.

      Sorry, I'm really wanting to try anything, but I need to be in the right place in my life to take something that'll have such bad side effects. If I miss a month of school in a row the college will say that I've missed too much and drop me. I CAN'T deal with that because as I said earlier, I don't have enough money for school or to take care of myself. I really need to just push through until I can take care of myself and afford to miss a lot of work or something (or even use the time between school and job hunting) to take something that renders me unable to function. At least with my medicine I can pretend enough to pass.

      1. Hi faeriefate,

        Thank you for getting back to me. I understand, we're all at different points in our migraine journey.

        I don't blame you for feeling uncooperative, life is not easy right now. I wish I had better answers for you.

        Hang in there and keep me posted on how you are doing,

        1. Hi faeriefate. Sorry to hear you're having so much trouble. Is there anything you can do to help your migraines even a little? When I was in college I had terrible migraines too & like you I couldn't miss class. There were nights that I'd lay in the bath tub with the shower pounding down ice cold water on me to reduce some of the pain. I kept ice packs everywhere I could (I worked in a biology lab with fridges). I had a couple places I could get in the dark & quiet for a while too. I zombied thru lots of classes & just worked extra hard on days my head wasn't explosive. I spoke to every professor I had to explain my situation. They weren't all nice about it, but some were--enough to give me a rotating schedule of classes I could either miss or zombie thru. What helped me most was that I already had good grades & participated frequently.

          I know none of this helps with getting a diagnosis, but maybe it can help you make it until then.

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