r/migraine • u/LettuceOverall3662 • 8h ago
A headache that comes and goes? Hope you will read my long post and come with advice or suggestions. I’m desperate
Hello I’m going crazy. I’ve been diagnosed with migraines 12 years ago or so. But recently it switched characters. I get pain every day, but it comes and goes. It’s worst at night time, laying down and sleeping. Sometimes I wake up from the pain. It’s mainly on the outer side above my eye. But can also pound in my temples, but my main struggle is the eye pain. I am quite sore when I massage the places I marked. My eyeball is also very sore and tender when I have my attacks, which can consist of many attacks each day. Sometimes perhaps 30 attacks. When it’s really bad, I have pain on both sides above both eyes, and they get so sore I can hardly look around. It relives a little when I press hard on the eyeball/eyelid where it hurts. I also get pounding headaches in my entire head during these really bad flare ups when I have my head down, straining, getting up from sitting to standing etc. These days I have pain around 8-9, and I consider if I can live like this. In these days I have almost constant pain, whereas in my normal days I can go hours without pain and then bam it starts out of nowhere and goes away, comes back etc. And then I have the “normal” days where I get these attacks with pain, it’s still a 3-6 but I can still function. I have tried out triptans, Indometachin, Morphine, Parcetamol, Ibuprofen and also previously some preventatives like beta blockers, muscle relaxers one time, Oxygen one time. The pain that comes and goes doesn’t seem like my migraines. When it’s at its worst my left eye seems to hang/swell. But it’s not clusters and I tried out Indometachin without relief. I hope it makes sense. I have thought about Occipical or Trigeminal Neuralgia. But any suggestions or advice is appreciated. I’m in so much pain almost chronic at this point, so I’m desperate.
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u/_heburntmyshake_ 7h ago
Not sure, but maybe look into idiopathic intracranial hypertension?
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u/LettuceOverall3662 7h ago
Sorry I forgot to mention I got an MRI and eye exam with no remarks, so my neurologist said that there were no indications of IIH.
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u/seasideseee 7h ago
Go to an optometrist to get your eye pressures checked as soon as you can. Monitor your blood pressure and if it’s too high or low let your doctor know. Migraine patterns change every so often but it’s definitely worth checking out incase it’s anything eye related especially if they’re sore. I used to work for an optometrist and if you call they should see you asap if it’s eye pressure related. It only takes 5 mins to check it.
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u/LettuceOverall3662 7h ago
Thank you! Forgot to mention I got my eyes checked a couple of times with no remarks. I once got my blood pressure checked during a migraine attack and my blood pressure was elevated. However I tried blood pressure medication in the past with no relief
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u/yuh769 6h ago
Do you grind your teeth when you sleep or clench when stressed? The jaw bone area is making me think of TMJ
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u/LettuceOverall3662 6h ago
I know I don’t grind my teeth, but I don’t know if I’m cleanching. I only have pain in my jaw sometimes, but it hurts to massage the area. My jaw clicks every single time I open it, and have done so since getting braces many years ago. They say it doesn’t mean anything.
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u/yuh769 5h ago
If it hurts to massage the area that does sound like something is going on there. Might be worth exploring. I went to a tmj specialist because I was having some pain and clicking with my jaw. Did the whole work up and found out I had a tongue tie that was causing jaw pain and pulling my neck forward. Worth looking into if you’re desperate and medication isn’t working. Migraines and TMJ also closely linked
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u/LettuceOverall3662 5h ago
It also hurts to massage the entire area marked out, and the point where neck and head meets. I had a tounge tie which was fixed a couple of years ago! But thanks. I hope I can try Botox in the head and jaw area!
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u/yuh769 5h ago
Oh! Maybe try dry needling in that area?? I noticed my neck was all buggered up after I got my tongue tie released and the muscles were all tight. I use to get migraines going from my jaw up to my eye, but after the release they went to my occipitals and neck
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u/LettuceOverall3662 4h ago
Yes I’m going for dry needling hopefully around my neck and jaw area in February. Hopefully it can help just at little at least. They said I might need to have more fixed with my tongue tie, but it was a more invasive procedure so it was only if necessary. I really don’t know if it is. But maybe I should have it evaluated again just in case. I’m just unsure if another procedure would help all my issues.
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u/Momiki789 7h ago edited 7h ago
You tried morphine? How did you manage to get your hands on that?
Did any of the pain killlers work?
My recent story is somewhat similar to what you are subscribing. I was enthusiastically massaging my neck, pressing firmly towards my spine. I started physiotherapy shortly after and learned that my way of massaging was a no go. Way to much pressure, and wrong direction of applying. I've eased way way down on the massage, only going from center to side slightly above the edge of the skull, and only grabbing the muscles at the side of my neck between my fingers and stroking. That plus strengthening exercises have calmed the area down. I still get pain after prolonged wrong head/neck posture and when overdoing the PT exercises, but the pain doesn't nearly radiate as much to my temples, eye and jaw anymore. Painkillers (sumatriptan, naproxen, ibuprofen, paracetamol, aspirin) do nothing for it. The physical therapy isn't done yet, so hopefully I'll book some more progress in the future.
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u/LettuceOverall3662 7h ago
I got it after hip sugery, but didn’t work in the headaches. I only massage sometimes, so have gone a long time without touching the area. But thanks for the suggestion. I’m also starting dry needling sessions, hopefully it will provide me a little relief. But no none of the painkillers work unfortunately, just have to deal with the pain. Sometimes I’m crying out my eyes because of the pain.
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u/StructureTerrible990 7h ago
With this pain pattern and it reacting to you laying down, I would maybe try and ENT and investigate chronic sinusitis or allergies, also the possibility of you having mold in your living environment. I had mold that developed under our floor and this was the pain pattern. It swelled so much internally it was insane. It even sealed off the passage between two of my sinus cavities because the swelling lasted so long. I didn’t have a snotty nose or any typical sinus signs. I was just in daily pain that continued to get worse as things got worse under the floor.
Things got a little better after mold remediation, but this pattern kept popping up cyclically. Turns out I had infection trapped in those closed off sinuses and it would ramp up, find a way out, then chill until it grew enough to get angry again. They could see it on a CT scan of my sinuses after I complained enough to get a scan. I just got a balloon procedure done and some other things and I feel an insane amount better.
I get this pattern of headache with allergies too, though, no sneezing or anything. Just inflammation. So something to consider either consulting an allergist or ENT.
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u/LettuceOverall3662 6h ago
Thank you! I got an MRI with no remarks on my sinuses. And living in a new house that’s only a couple of years old, with ventilation systems in every room etc. I have lived in an apartment with mold, and I got a sore throat etc from that. I have an appointment with an ENT for my nose running in the end of this month, so it’s worth asking them if they think it could be related. As my hearing also sometimes go out and starts ringing loud in my ears.
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u/StructureTerrible990 6h ago
That does sound like a good avenue for that appointment. Maybe more like allergies? They say those can change. I hope the ENT can help!
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u/LettuceOverall3662 6h ago
I have done bloodwork for normal allergies and it came back negative - but I can try and talk to them about it!
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u/lrglaser 5h ago
Have you talked to your doctor about occipital nerve blocks? Its def worth having a conversation with your neurologist.
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u/LettuceOverall3662 5h ago
Yes! I suggested it a while ago and he said no. He is against the whole idea that muscle pain etc can cause the pain
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u/lrglaser 4h ago
I am sorry you have such a closed minded doctor. That has to be very difficult. I strongly suggest you find a different neurologist if possible. There is a lot of research that suggests muscle weakness or muscle strain can cause headaches. Or maybe you can strongarm him into giving them to you by explaining you are the one paying for them and if you want to try what difference does it make to him, because really if you want to try and are the one who is paying for the treatment then what the hell does it matter?
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u/Southernpeach101 5h ago
Could it be a cluster headache or tension headache? I get migraines, cluster headaches and tension headaches. All are different. What you are describing with the left eye hanging and swelling is a cluster headache. My eye starts to leak too and it looks like I’m having an allergic reaction. I had a ton of attacks back to back a couple months ago then never had them again. They are very painful. I found ubrevly helped mine but I still kept getting them.
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u/LettuceOverall3662 5h ago
I don’t think it’s only tension headaches, it doesn’t really sit in that area. But I can’t be sure of course. I definitely have tension that probably makes the issue worse. My neurologist is unfortunately not willing to look that way. My neurologist also said it wasn’t clusters, as I have way to many attacks that lasts shorter in a day. Which is why I have tried out mediation for Paroxysmal Hemicrania for a couple of days, as it’s closely related symptom wise. But unfortunately no relief. But thanks for the suggestion. I hope Botox is the next step for me, but I’m probably also trying out the newer migraine medications like you.
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u/Ancient_Organism 3h ago
That's your TMJ my friend. TMD is what it's called. It's been a 12 year battle for me. It's your jaw, or atleast everything you stated sounds like it.
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u/LettuceOverall3662 3h ago
My jaw is definitely popping and moving to one side when opening it etc. Have been that way since I got braces unfortunately, they say it’s normal. However I’ve had severe jaw pain once, I could hardly eat or open my mouth. I have the same pain radiating to my eye when massaging the whole other area I circled, so maybe it’s a combination of different things. But the jaw could definitely be a factor. I tried a night guard but it seems to make it worse.
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u/satanaintwaitin 7h ago
So this isn’t necessary a migraine, but more of nerve pain? Because you say multiple attacks per day?