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.