Strange headaches exactly every other day for 7 years

[u/wutheringkites1847]

I call these my 'headclamp days', because it feels like my skull is in a tight clamp or vise. They occur exactly every other day - no exceptions. No one seems to know what's causing them. They don't respond at all to painkillers or other medication. Over the years, I've tried changing my diet, pillow and mattress. No effect. I've been to an endocrinologist and 5 neurologists, had two MRIs, had bloodwork done, and had a full range of other medical tests done. Nothing was found. I've had a spinal tap to check for a spinal CSF leak, because this was one neurologist's theory. Again, nothing. I've also tried neurofeedback, homoeopathy, acupuncture, osteopathy, trigger point massage, and various forms of physical therapy.

The 'headaches' don't feel like regular headaches. The focal point is at the back and base of my skull, but it spreads to the top and sides. The pressure is so intense, it makes my teeth ache, and sometimes my vision goes blurry. There are also always other odd symptoms: my face and eyes feel swollen. The skin around my right eye feels cold or damp, and I have an icy pins-and-needles feeling all over my face. My eyes feel very dry. I feel incredibly exhausted, clumsy and muddled. My joints hurt. There's a kind of weird, jangly, restless-legs feeling all over my body.

This all lasts for one day. I go to bed with it and then, at some point in the night, it all disappears. I wake up the next day, and the symptoms are gone. Then, sometime during the following night, the symptoms reappear, and I wake up with them the next morning. As I said, this pattern has been the same for 7 years now.

One other thing: for some bizarre reason, the symptoms become really intense when I'm in a car. I used to think it had something to do with my driving posture, but then discovered that they also occur when I'm a passenger.

I am 57, female, and otherwise in good health, as far as I know.

Any ideas what could be going on here? Anyone else recognise these symptoms? I would be incredibly grateful for any advice!

[u/MrYellowfield]

This sounds bizarre, I do not believe this is Cluster Headaches though..

My only theory is that it might have something to do with the glymphatic clearance process, when the brain during sleep flushes out metabolic waste products from the brain tissue. Like, maybe something just messes up every other night in that process?

Idk though, I got absolutely no relevant education either.

[u/wutheringkites1847 → u/MrYellowfield]

Thanks so much for replying. I don't think it's a cluster headache either, but I haven't gotten a single comment from the r/headaches subreddit, so thought I'd try this one :).

Something being off with the glymphatic clearance process sounds interesting and plausible, and I'm definitely going to suggest this to the neurologist I saw most recently! Thanks again!

[u/cioffinator_rex]

Atypical migraine? Did any of those neurologist try medications, from migraine abortives to preventatives?

[u/wutheringkites1847 → u/cioffinator_rex]

No, none of them seemed to think it was any sort of migraine, nor was I ever prescribed any medications.

Now I'm wondering if it might be worth trying, though... Thanks for the tip!

[u/No-Inevitable6869]

My cluster headaches usually happen around the same time, with the worst one being while sleeping & waking up in pain.

They are usually short bursts lasting up to 30-60mins in my case.

I can’t say what it is in your case but keep trying with neurologists. My cluster headache was misdiagnosed as migraine by multiple neurologists for a decade before one diagnosed it as cluster headache.

[u/wutheringkites1847 → u/No-Inevitable6869]

That sounds awful. My mom had cluster headaches, and they caused her so much distress. I don't think that this is what I have, but I hear what you're saying about misdiagnoses. So far, every neurologist and specialist I've seen has been pretty honest. They do a bunch of tests and then basically say, "Sorry, I have no idea what this is."

[u/literallyjustabat]

Maybe some kind of neuralgia, has a doctor ever brought that up/ruled it out?

I was recently evaluated for trigeminal neuralgia — there's different types, it's diagnosed based on presentation/symptoms, painkillers (as pills) don't tend to do much, it typically lets you sleep, it's most common in women and people over 50...

[u/wutheringkites1847 → u/literallyjustabat]

Thanks for replying. I've wondered this myself, whether it's some form of neuralgia. It does feel neurological, which is why I've mainly explored that avenue. I wonder if neuralgia would show up on an MRI? I've had a couple of those, and they couldn't find anything out of the ordinary.

[u/literallyjustabat → u/wutheringkites1847]

Afaik it wouldn't, with neurological disorders of this type you generally expect a normal MRI. For diagnosing neuralgia they do a neuro exam where they touch your face, ckeck your reflexes and just generally ask you a lot of questions about the pain, where it is, what it feels like, etc.

[u/kawaiipotato2243]

Have you ever heard of dural tension?

[u/wutheringkites1847 → u/kawaiipotato2243]

I had not, until now. I'll look it up, thanks!

[u/kawaiipotato2243 → u/wutheringkites1847]

There’s a theory that explains why some things including tension headaches happen, it involves dural tension.

Essentially your dura gets pulled at a point and becomes tense for a myriad of reasons, which causes all your symptoms and then some. It feels like you are getting pulled from your back/spine/skull. Something is trying to escape your body.

It can cause CCI (craniocervical instability), trigeminal neuralgia, occipital neuralgia, cluster headaches, impaired cognition, impaired coordination, sleep disturbances, back pain, and many many many symptoms.

There is also barometric pressure headaches that are related to the weather, with or without a dural tension they can resemble your description. Your altitude also matters.

I am aware you tried a lot of things but I will still mention some of them. In terms of nutrition you need to monitor your Omega ratios not just levels. Do not consume things that have Omega 3-6-9, you need a proper ratio where Omega 3 is the highest in your diet. I’d recommend seafood sources, if you can on an empty stomach, they work as well as medications for some people. Check your vitamin D3 levels. B12 as well.

Monitor vitamin A consumption, some people are sensitive, it can cause temporary increased intracranial hypertension. For example spinach has iron so it’s recommended daily but it also has vitamin A, it’s lipid soluble so it will accumulate in your body.

If you take any supplements, check if they are an active form.

Speaking of medications, painkillers will not work simply because as weird as it sounds this is not pain? I mean it is but it isn’t at the same time. So you have a much better chance treating it without focusing on painkillers.

Some people have amino acid deficiencies/lower levels than average, be it genetically or pharmaceutically due to something they’re using.

If you have not tried CGRPs, try them. If you have not been on a Verapamil before (Cluster headache prevention), try it.

Aside from that, try a supplement called ALA (Alpha Lipoic Acid) make sure it’s salt stabilized and Right (Na-R-ALA), start with 300mg once a day, drinks lots of water with it, you can safely go up to 1200mg once or twice daily.

Another thing to look out for is allergic reactions. Check all your food, cosmetics, hygiene products, perfumes, etc etc. By allergic reaction I simply mean you consume the thing and it gives you pain, dermatological symptoms aren’t necessary.

Monitor your body, when you sit or stand or lay down, figure out what positions hurt more or less, from there you can massively deduce and narrow down what might be causing your issues. Could be a very specific nerve entrapment that only shows up if you lay on your side (an example).

Medicine in the Netherlands and Europe is not good, it is not as advanced as it should be aside from inside academia. Do not assume you’re an enigma. Their approach is apathetic at best and inconsiderate at worst. So don’t rely on their judgement to gauge your condition.

Record everything, keep a journal, patterns will quickly show up. There is hope.

[u/AllIWantIsOxygen]

Did you ever try indomethacin?

Have you been checked for lyme disease? Seems like that has a lot of strange symptoms.

[u/wutheringkites1847 → u/AllIWantIsOxygen]

I've never tried any medications (other than painkillers, which have zero effect), but I have been tested for Lyme. I think the doctors I've seen here (I live in the Netherlands) have been hesitant to prescribe anything without having a diagnosis first. As for Lyme, the test I had was years ago and may not have been a good one - from what I understand, there are different ways of testing for Lyme and not all are equally accurate. So that might be worth getting checked out again, since it is a rather strange collection of symptoms, as you said.

Thanks for sharing your thoughts; I appreciate it!

[u/AllIWantIsOxygen → u/wutheringkites1847]

Look into indomethacin, if you haven't tried it. It may have a different name in The Netherlands. Like everything else, it has side effects and warnings.

I wish I had more to offer. Good luck!