Headache Mystery Solved!

I now think going to the doctor when you’re miserable in pain is the equivalent of going to grocery store when you’re starving – you’ll grab at anything that fixes your immediate problem, no matter how bad it may be for you!  Although a doctor seeing you in pain may help them take you more seriously (how sad is it that this is true!), it certainly doesn’t do much for your ability to make sound decisions!

I wrote last week about my chronic headache.  I’d had it for a couple of months – wake-up to bed-time with no relief.  I went to my GP, took ibuprofen, Excedrin and Imitrex with no relief and had an MRI with normal results.  Most days were at a pain level between 3 and 5, but a few days (including the day I was at the neurologist’s office) was a 7 or more.

I sat in the neurologist’s office in a lot of pain after months of this and just wanted it to stop.  He asked me the basic questions of where it hurts, how long it’s been doing it and if I’m sensitive to light and/or sound (yes to both), had any vision problems (had tunnel vision a few days before – right before the first of the two worst days), etc.  He looked at my MRI and said it was normal.  I mentioned that I have Sjogren’s and therefore keep fairly careful track of symptoms and how I feel and that’s how I know what day my headache started – because I wrote it down in my daily “how I feel” journal.  He made no comment or asked no questions about any other aspect of my health or life other then those few “headache descriptor” questions.

He wrote me a prescription drug for Topamax to taper up to therapeutic dose (he explained that it is a long-term maintenance drug used to prevent or lower the frequency of migraines – not to stop one that’s already there – and would take 4-6 weeks to work) and come back in a month.  He gave a hand-wave-y mention of minor side effects like tingling in hands or losing weight but said I wouldn’t have a problem with it.  It was all very quick and I was out the door.

The next couple of days were back to my “normal” headache level and I had begun taking the Topamax (25mg at bedtime each day).  With my headache level back down to “I can still think like a fairly rational person through this pain” level I began to research Topamax and began to think about why he’d just really handed this medicine to me without even attempting to discover the source of my headaches.  Why had they come on all the sudden?  Why was I having them the second I woke up in the morning?  Why were they every single day when before I hadn’t had them?  And was the answer really to put me on a long term maintenance med that’s not all that friendly to the body when we weren’t even sure what the cause was?

And then it hit me like a smack upside the head – I clench my jaw.  I do it during the day and I know I do it at night.  I cracked a molar doing it a few years ago and my dental hygienist asked me one other time if I woke up with sore jaws or anything because my teeth looked like they were being clenched.  At the time I told her I wasn’t really noticing it (and I wasn’t).  But now I sure as heck am.

I’d been so focused on my head hurting that I didn’t pay attention to the fact that may checks hurt, my jaw hurt, my teeth hurt and it was all connected!

I stopped taking the Topamax (I was on the minimum dose – I hadn’t made it to week 2 to increase it yet so I didn’t need to wean back off of it, thank goodness – even on the lowest dose I’d started seeing the side effects and didn’t like them!) and I’ve been focusing on my jaw.  The last few days I’ve been consciously relaxing it during the day.  I catch myself many, many time throughout the day with it clenched and I’ve been constantly checking myself and relaxing it.  I obviously can’t do that at night because I’m asleep!

I tried getting a sleep guard from the drug store as a quick fix, but my mouth is small and I have an extremely strong gag reflex and both of the two kinds I tried made me gag within seconds of having it in (I’m one of those people that can’t even get x-rays done at the dentist each year without gagging).  I have a call in to my dentist to see what he recommends.  I know the guards are good for grinders – but I don’t think I’m grinding, I’m almost positive it’s just clenching and I’m not sure a guard will stop that anyway – after all, I can still clench the guard.  After all, the guard doesn’t stop grinders – they still grind – it just protects their teeth by grinding down the guard instead of their teeth.

I did take a muscle relaxer the last two nights before bed (left over from a back spasm on Mother’s Day last year…used one or two of them at the time and kept the bottle around in case it ever came back because dang that hurt!) and when I woke up I noticed a BIG difference.  My jaw and cheeks are still sore and tired – but it’s a “worked out a few days ago” sore and tired rather than a “just clenched all night long” sore and tired!

And yesterday, for the first time in two months – NO HEADACHE!

I can’t help but wonder if this is something that should have come out in one of my consults with a doctor – bloodwork, MRI, prescriptions for acute migraine med and long term maintenance med – and all it took was releasing my jaw muscle.

And I’m actually someone that tends to focus on the “why” instead of the “fix it” of my health concerns, but when I was in that much pain at that moment I just wanted it to stop and I wasn’t thinking clearly.

I spent a year and a half taking meds for RA when I don’t have RA – I have Sjogren’s.  Had that rheumatologist asked me “do you have dry eyes or dry mouth?” we could have put the pieces together far earlier than we did, saved thousands of dollars for the insurance company, and spared me taking many meds that weren’t good for me (and two of which I was allergic to).

Again, had a doctor asked me about my teeth and clenching my jaw we could’ve saved all the testing and meds and gotten to the source of of the problem much quicker.

I understand doctors are humans.  I get that they miss things or don’t think to ask every possible question every time someone comes into their office.  But asking a simple question to screen for the second most common autoimmune disease or asking about other possible causes of headaches (especially when you hear that they are waking up with them so what could be happening during the night to cause or continue them) seem like reasonable things to expect.  Yes, I probably should have thought to mention that my jaw was aching along with my headache, but you know what – I was at a level 7 pain at the time…pain makes you not think so clearly.  I would’ve answered the question honestly had it been asked but I wasn’t “with it” enough to know to volunteer that information on my own – I was in triage mode – tell them what hurts the worst right now.

What’s the stumbling point in the system that this keeps happening?  Is it problems in how doctors are trained?  Is it due to drug companies pushing meds?  Is it due to the short time they’re allowed to schedule patients for so it’s quicker to shove a med at them and out the door?  Is it due to them “burning out” – trying to find the causes for people but then getting frustrated when some people just want the med or when you can’t find the cause?  Are they too focused on a set protocol of questions to ask in a given situation?  If so, how do we update that list of questions to make sure it includes things like the ones that could have been asked of me that would’ve saved so much time, energy, medicine, etc.?  Is it that specialists are too specialized (they don’t think about the bigger picture – like the neurologist thinking about me clenching my jaw, but instead just thinking about neurology)?  I don’t know the answer to these questions, but I know that more often than not in the last 4 years of a whole lot of medical care in my life, it seems like it’s a guessing game – not sure what’s causing what and not sure what to give you for what, so let’s try this.

2 thoughts on “Headache Mystery Solved!

  1. I have Sjogren’s Kelly and a mouthguard has been a big help to me. Having something foreign in your mouth helps to keep it less dry, and it does help with the clenching. I put a little remineralizing agent on my teeth before I put it in for the night.

    I am sure it is working. I had to stop wearing it for about 6 weeks and my front teeth deteriorated badly in that short a time,

    Good luck. They make them faster now than in the past and with less volume

  2. I have a mouth Gaurd that has a weird piece that just out the front. It keeps me from clenching & grinding. My DDS is in KC & knows Sjogren’s and is wonderful. E-mail me if you’d like info.

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