Desperate for help!
 

Okay, I'm an 18 year old female. I've been going to a neurologist for 2 years now, but have been experiencing almost everyday headaches for 4 years. I've been on 5 different medications, changed my diet, got an eye vision test, had x rays and two MRI's, and I've tried all the basics to combat these headaches with no help. About a year ago I started noticing bite marks on my lips, gashes in my tongue, and bruises that I never remembered getting. But about 5 months ago I noticed I would wake up in the morning with my light on and my glasses on and my phone on twitter or something. Before this, I would remember every time I woke up during the middle of the night. And now, I have no idea what I do in the night. I could sleep for 8, 10, 12 hours and I still wake up exhausted, like I didn't sleep at all. I wake up with bruises and my body feeling stiff and achy. And on the nights I notice this happen I wake up with a massive headache. I've been to this same neurologist for 2 years and haven't gotten any answers. I just wanna know if these could be related or not. I'm desperate for them. Please help!

Maybe yes; maybe no...
 

Hi Capn, welcome.

Coupla things...

Do you have a specific headache diagnosis?

Is your current neurologist board-certified in headache medicine? IME of many years with chronic headaches, I've found that while most neurologists claim/think they know how to treat headaches, they really don't—not the difficult ones like us, anyway. I didn't start getting results until I found a headache/migraine specialist—one whose practice is limited solely to headaches migraine. Since then my headaches have gone from chronic (>15/month) to 1-2/week.

Are you keeping a headache diary/log/journal? If not, it might be a good idea to start one. It's helped me identify a lot of triggers & clues, and has been instrumental in my improvement.

Have you had a sleep study done? Reading your narrative, I couldn't help but think of the possibility of somnambulance or other sleep abherration/anomaly (a college roommate was a rare type of sleepwalker).

Have you asked about/considered hypnotherapy (by a licensed physician only)?

hypnosis chronic headache

Review of the efficacy of clinical hypnosis with headaches and migraines.

Doc

Welcome capenjensen. :Tip-Hat:

Dr Smith,
Have you had the hypnosis for migraine relief? Can you explain how it went for you?

I have not personally, but I've been aware of it for some time in connection with that roommate (long story). I mentioned it in this case because of capnjensen's "missing pieces" and apparent/possible sleep disorder.

hypnosis sleepwalking

Doc

I have yet to receive a diagnosis. She treats me for the "cycle" of my headaches and not for the pain. She's ultimately given the last resort of Botox injections and I don't want to do that just yet. I do however keep a journal, I track when my headaches occur, when they end, and how severe they are. I haven't even thought of hypnotherapy. It never crossed my mind actually. And because these "missing pieces" are so recent. I haven't seen my neurologist yet, as I see her every six months, so I haven't had a sleep study done yet. Can you explain more about the two suggestions you had for me pertaining to your ex-roommate? Thank you for your reply!

Just my opinion, but I think being strung along for two years, and six months between appointments, is a pretty good indication that that neurologist hasn't got a clue.

I gave several neuros a year at a time, and the appts. were 1-2 months apart before I moved on. When I found the headache guy, it was on the first or second appt. he asked me 3 questions, turned around to the filing cabinet behind his desk, and handed me a sheet describing my diagnosis. Treatment took a little longer, but it wasn't 2 years until I got results—a combination of the right meds, physical therapy, and trigger identification (through the diary).

You may need to expand your diary entries to help yourself figure out your triggers. The doctors can't/won't do that for you—it's more of a self-help detective exercise. Record everything you can leading up to the headches/episodes going back 48 hrs if/when possible (some triggers can take 24-48 hrs to initiate a migraine—most are shorter, within a few minutes to hours. Record activities, food & drink intake, exercise, smells.. whatever you do and/or are exposed to. Almost anything can be a trigger.

migraine triggers

Do you snore? Could be obstructive apnea which can cause/exacerbate migraines. I have that, and use a cpap machine. It helps.

Your PCP can get/order you a sleep study.

RDV: Roommate was the most extreme level of sleepwalker; he could get up, carry on coherent conversations, go into town, bar-hop/party all night, come home, and get up the next morning unaware he'd done any of it. He was also extremely susceptible to hypnosis. We were told that people who are that level of sleepwalker are often very susceptible/responsive to hypnosis, & vice versa.

Doc

Set up a video camera in your room and record your sleep to see what happens.

chiari
 

get checked for Chiari malformation .... Takes a Mri