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Newbie here and full of questions

  • By retrograndma

    I’ve had migraines before. The kind that send me to bed with a sleep mask and an Excedrin. But my migraines were occasional, one every few months. They responded to the rest and Excedrin, and I went about my business.

    Last December (2016), I was rear ended at a stop light. The next day, I was driving and all of a sudden had a conscious memory lapse – instantly I couldn’t remember where I was, where I was going, and how to drive a car. It lasted for about two minutes and then just as suddenly, everything came rushing back. I went straight to the ER! I was diagnosed with a concussion. The next 3 months were some of the worst headaches of my life. I had one more memory issue this past spring – very similar, I was also driving at the time. It took 7 months to get healed from concussion symptoms.

    I felt pretty good until sometime mid October. A migraine started; it was pretty typical, begins in my right temple and progresses across my head, with accompanying light sensitivity. But it also had sound sensitivity to it, that made it feel more like the concussion headaches I’d been having earlier in the year. And it didn’t go away; it would vary in intensity but after a week, I was concerned enough to call the concussion specialist to make an appointment.

    They said it couldn’t be the concussion coming back. So they gave me a referral to the ENT. I’ve had environmental testing done (I’m allergic to all 5 of the local grasses, but that’s it). The allergist thinks it’s migraines triggering allergy symptoms and vice versa. I’m on a prescription for Flonase and have a CT scan of my sinuses on November 30th.

    Meanwhile, the daily migraines are accompanied with light and sound sensitivity, occasional nausea, lightheadedness, sluggish thinking, occasional disorientation. I’ve seen my primary care doctor twice in the past month, and I have an mri scheduled for November 22nd. I have an appointment with a migraine specialist, but that’s not until December 28.

    Then I had another driving memory lapse, this past Wednesday. I was headed to my counselor for an appointment (I have type 2 bipolar, well managed on gabapentin). In the car, i couldn’t remember how to get to his office. I’ve been going there for the last 3 years, so this wasn’t short term memory issues. It lasted about 2 minutes while I wracked my brain trying to remember my route. Then just as suddenly everything was back, and I was able to get there easily.

    Then this past Friday night, or I should say, middle of the night, came the worst headache since the early days of the concussion. Woke me up like a power drill to my temple. So painful, I was pacing the kitchen floor.a 20 on the 1-10 scale. After an hour, i was desperate, I took a 200 mg ibuprofen, a 500mg acetaminophen, a 325mg aspirin, and a 600mg gabapentin. I paced the floor with an ice block held to the side of my grad and wished I could die so I wouldn’t feel the pain. The medicine and ice did their work and it reduced enough that I could go back to bed.

    But three next morning, my vision was a little blurry and my brain very slow. I got momentarily lost on my way to a friend’s house. It was asst that point I went to the ER. I was given a series of injections: benadryl, toradol, and reglan. They helped the nausea and lightheadedness, but did nothing for the migraine. The neurology resident saw me, as well. He said he thinks migraines (duh. But it’s the ER.) And possibly temporal lobe seizures. They ran blood tests, all negative, and told me to get an eeg in addition to the mri. They gave me a script for imitrex, just in case.

    I’ve had to use one of those imitrex already, this past Monday night. Same scenario, power drill to the head sensation. Defcon 5 level headache. Yesterday I was nonfunctional for about 4 hours; nausea, light sensitivity, lightheadedness, level 8 headache. Missed work and a social event.

    Woke up this morning, back to level 6. Seems like I’m between a 4-8, all day every day, and its really wearing me down. So that brings me here, looking for help in hanging on until we get some answers.

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  • By retrograndma

    Figured I’d better add: my primary care told me to avoid taking any meds (otc or otherwise) unless the pain was unbearable. Also to avoid caffeine. I only had one cup of coffee a day, so I switched to decaf for that one cup. Leggett than that, I only take the gabapentin for my bipolar, and otc vitamins.

    I do have food and medication sensitivities. Lactose intolerance, nonceliac gluten sensitivity, cruciferous veggies, watermelon. Med sensitivities are klonopin, morphine family, miripex, zofran.

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  • By GardensatNight

    So sorry this is happening. If the other tests don’t turn up anything conclusive, be sure to ask your doctor about a lumbar puncture to rule out that the car accident and any whiplash could have caused a CSF leak and that could be exacerbating your headaches. Do your headaches improve/change if you lie completely flat (like on NO pillows?)

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    • By retrograndma

      Thank you for the suggestion about the lumbar puncture. I tried lying flat on my back on the floor to see if it would affect my symptoms. Aside from a slight increase in dizziness, it didn’t change my symptoms at all. However, I did only try it for about 5 minutes.

      Also, thank you for taking the time to respond. I feel alone and isolated today, and knowing people really get it, does help a bit.

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    • By GardensatNight

      That’s great that your PA is able to get you in this morning. Tell us how it turns out. Hopefully they get you on some preventatives that can help calm things down while you wait to get in to the headache specialist. I saw in your other thread that you were having trouble swallowing. That would concern me and I would mention that to the doctor.

      Another thing you might try is checking out your environment for potential triggers. If you’re sensitive to concussion triggers, is light bothering you? You might check your lightbulbs. Fluorescent bulbs are the most irritating, although LED and halogen can be too. Incandescent are the ones my neuro-opth recommends. Another thing to check out is what you’re eating. I know I wasn’t sensitive to food before, but suddenly after my body changed/the accident and I started having daily migraines, every food on the migraine list seemed like a trigger. Eliminating them from my diet seemed to calm my brain a lot.

      https://migraine.com/blog/elimination-diet-foods-to-eat-foods-to-avoid/

      Postural headache is headache that is different when you are lying down flat versus when you are upright. I didn’t think about the fact that I had it because 1. my head hurt ALL THE TIME and 2. my doctor never asked weird questions like that. Normally the brain floats in a bath of CSF fluid that moves between the brain/spine. If there’s a leak, the brain is at the top, so it runs low on fluid and sags into the sharp inside of the skull, or onto itself, both of which piss it off. Lying down lets gravity move fluid back into your brain, so it’s a test to see if your brain gets less antsy. When I was still leaky, if I was having an active migraine, lying down might not stop the migraine, but it might take the pain (after a bit) from a 7 to a 3, then I would notice if I had to, with much dread, get up to go to the bathroom, there was a big pain spike to a 7 when I was standing.

      I had episodic migraine, then was in a car accident, never hit my head, but got the worst migraine of my life, had to go to ER twice that night, and three months later started having unstoppable migraines every day and light sensitivity so bad I can’t be around any man-made light at all. That was 3.5 years ago. No one could figure out what was causing me to deteriorate so quickly until the lumbar puncture revealed low pressure and my CSF leak was found. Anyway, that may not be what is going on with you, but I would recommend at least speaking with your doctor about a lumbar puncture if nothing else turns up, especially after your car accident, just to rule it out. You can ALSO have pressure that is too high, as other members on this site do, and that can exacerbate migraine as well.

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  • By retrograndma

    Update: called neurology department to see if they could put me on cancellations list for migraine specialist, per hubby suggestion. Don’t know why I didn’t think of that myself. Chalk it up to foggy brain. Also asked about anything they could recommend I do in meantime. Nurse said no otc pain meds but that my primary could start me on a script, with the understanding that the specialist may change or add to the script when i see him. That gave me a lot of hope. I see my doctor’s PA tomorrow morning with a-list of preventative meds in hand and printed copy of migraine diary.

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  • By retrograndma

    You might have seen it in the swallowing thread, but here’s a copy/paste of the update:

    I saw my primary care this morning. They gave me a shot of Toradol. That brought the migraine back down to a four or five. They also prescribed propranolol 80 mg for me to take daily.

    Apparently someone in the ER did not send in an order for the EEG. It’s on my paperwork, but didn’t get sent to the EEG Clinic. They have an opening tomorrow, so they are going to try to have my primary care doctor order the EEG.

    I have an MRI next Wednesday. And I got my name on the cancellation list for the migraine specialist. The Toradol worked enough that I can function today, which is fantastic. It’s progress, and I’ll take it.

    About the swallowing, I forgot to talk about that to the doctor! It doesn’t prevent me from actually moving food or liquid, it just feels off, or odd, or whatever. I see the primary care again in 11 days unless something on the EEG or MRI raises a red flag. If I’m still having those swallowing weirdness sensations, I’ll try to remember to bring it up at that appointment.

    The food list – yes I ran across that. As I told Nancy in the other thread, I spent a long time – hours – reading this site yesterday. I’m going to print out the elimination diet and see if the migraine specialist wants me to start doing any dietary modifications. I did read about decaf…. sad because I love coffee. So having peppermint herbal tea this morning. I think I remember that being safe.

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  • By retrograndma

    Update:
    Sigh. I have no migraine this morning. Thanks to the blood pressure medication. However, I can’t let my blood pressure go below 100 / 50. This morning, it was 105 / 57. That’s really, really low. Sigh. I might not be able to continue with this med, if my BP goes any lower. My normal BP is 112 / 69. So they were afraid this might happen.

    Charlene

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  • By GardensatNight

    That’s an awesome sign that a preventative had such an immediate impact! Hopefully this one will work out, either at this dose, or a different dose, and even if they have to try a different preventative, there are LOTS of them out there. Very happy you had a good morning!

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  • By retrograndma

    Thank you, girls! The support and encouragement mean so much.

    Had my EEG yesterday and MRI this morning. Omg…. They were rough and I’m in no hurry to do either of those again. Hoping the results of the tests are clear to read and no repeats necessary.

    My head pain is allot better, thanks to the Propranolol. But boy does it make my bp low. Last night it was 86/58 and my pulse was trying to compensate at 76. I see my doc this coming Monday for the bp follow-up. They may lower the dosage on the Propranolol, which then may increase my headaches again. Give and take, that’s just how it is.

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  • By GardensatNight

    Yeah, for someone with a headahce disorder, the MRI machine is like getting mugged. So sorry! Glad the propranolol is working! But yikes that is some low BP. Maybe your doctor can find a combo of meds that will work and still give you some relief. It can take some tinkering at first, but it’s a good sign that your headaches have responded to something!

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  • By Maressa

    I have nothing to add that is different from what others said, other than I am so sorry to hear that you are going through this! Migraines alone are horrible and incapacitating, but having the memory problems must be terrifying. Sending you good vibes!

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