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Diagnosed with Atypical Chronic Migraine - Migraine Every Day!

Hello, I was recently told (diagnosed I guess) that I have atypical chronic daily migraine or what some doctors I've seen are calling CDH (chronic daily headahce). I used to get headaches maybe 1-2 times per week and an ibuprofen and a coke would eliminate them pretty successfully. Now, 1 or 2 ibuprofens doesn't do anything. I might as well be taking skittles. This all started last year in May when I had a severe vertigo attack that sent me to my local ER. I had severe spinning and my eyes were shaking due to nystagmus. I thought I was having a stroke! At the ER they told me I had benign positional vertigo, gave me some ativan and meclizine and sent me home. Those drugs actually took care of the vertigo and anxiety I was having, but about a week later I started having daily headaches. Actually, after the vertigo attack I was having severe panic attacks almost daily, but no headaches. Then the panic attacks lessened, but I developed a daily headache. This wasn't a normal headache for me however as I was seeing spots (both black and bright flashes), feeling weak and dizzy, and tons of brain fog like I had been hit in the head. Pain level would fluctuate on a daily basis anywhere from a 3-8.

Now almost a full year later, I still have the daily headache/migraine with auras, haven't worked, and developed a significant amount of neck pain on my left side to the point where I cannot touch my ear to shoulder or do any streches where I'm tilting my head that way. Been to physical therapy and do those exercises everyday, but find no relief. Changed my diet to gluten-free and sugar-free for the most part, and still no change. Stopped drinking all caffiene, teas, sodas, etc. and now just drink water and milk (just reintroduced milk back into diet this past week). Been prescribed a ton of medications that I had bad side effects to or just couldn't handle.

I go to bed with the same migraine headache every night and wake up with it. I am able to sleep for the most part, but the migraine never goes away. It's not a 9-10 pain scale every day thank God, but it's always there and it's ruining my life. Will I ever see relief and have my old life back? I used to be an avid mountain biker and athlete, and now all I can do is take walks around the block. Then I'm back home icing my head and lying down. I've even considered taking the easy way out and giving up with suicide, but I have friends and family who care about me and I could never harm myself. I know folks here have it way worse than me and I am terribly sorry. I feel your pain.

I guess my question is, has anyone with chronic daily migraine/headache found a solution or found out they were wrongly diagnosed? I always feel like I may have MS or something even though I've had a CT and MRI that were normal. Every day I feel super weak like I haven't eaten or drank water (even though I eat really healthy and drink lots of water), I'm dizzy, unsteady, and my brain feels like fluff. It's maddening! I'm just at a loss of what to do so any support, advice, whatever would really help. I just need hope for the future! Thank you.

  1. I don't have an answer for you, but FEEL YOUR PAIN (I guess not literally, haha) and have a headache everyday too. I would love to hear if anybody has some helpful info too. Hang in there!

    1. Hi, thanks for your support and sorry to hear you have the daily headache as well. I hope that you find relief soon. Hang in there as well!

      Have you or anyone else here ever experienced weakness with or without the head pain? I feel very weak every day and often feel like my legs are going to give out or "buckle". I've read that weakness can be a symptom of migraine, so maybe that's what it is, but it's pretty scary. I'm relatively young (early 30's), in good shape, not overweight, and pretty healthy, so I can't see what else would be causing it. The weakness is a daily thing and will be there no matter the scale of pain. It was especially bad today where a few steps felt like I had even taken them or like I was walking on a cloud. I also get vertigo still from time to time, especially if I lay on my left side (where bad neck pain is) and then get up.

      1. Before I began reading this, I thought I had some type of undiagnosed cancer that would come can symptoms so bad, without an actual headache pain be a migraine I would think. Many days, I can hardly wait to go to bed in hopes that the next day I will wake to a "better day". All days I have the brainfog, wooziness, but other days the facial numbness/tingling sets in with any motion making me feel like I am experiencing carsickness. White lights....HORRIBLE!! Sometimes just someone talking with their hands in front of me makes me feel sick. Mine started with perimenopause...just randomly. I am sad that others are going through this but am glad to see that I am not crazy in my symptoms.

        1. sound like me....very athletic and now this makes you feel like you are rapidly aging. I also have wondered if I have been diagnosed wrongly but until more symptoms arise...don't know it could be tested further. I know your sadness and the want to just be normal. I want the same thing. I am glad you have a wonderful support system of people who care about you. One day at a time and hopefully one day we will all wake up with no symptoms...that is my hope.

          1. Michele, I feel your pain! I grab peoples hands all the time or shut my eyes. I can not go to the store or out to eat or watch TV. Ive been told I no longer process movement properly that is why it bothers me, another doctor told me its stimulation overload. That the migraine has its limits of what else I can process and that I do not process the noise or the movement without getting very sick.That may help you in understanding your circumstances.
            I drive and if someone passes me I go backwards. I pass someone they went backwrds. So I can only take 2 lane roads and only drive a short distance. The fog prevents the proper processing if that makes sense to you.

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