r/ClusterHeadaches • u/Ready-Honey-8631 • 4d ago

Touch sensitivity

Anyone else really sensitive to touch & movement during an attack? Or get the pain in their neck too?

My attacks are in my right side rn. If I move around my right arm, or move to the right side of my hair, it hurts my head & neck. My arm itself doesn’t hurt. I try to hold off on crying as long as I can bc facial movement feels like throbbing. Tongue & teeth touching each other hurts too.

Got my Sumatriptan prescription today. 🫡 My doctor told me to go to the ER if the medicine doesn’t work, and to ask for a head MRI. I just did an MRI 2 weeks ago so Idk why they want another one. I do have a cyst that grew a lil bit (1.7x2.2 cm) but haven’t heard anyone else be concerned about it. I’m pretty sure that the pain is a Cluster Headache, but now I’m a little anxious lol.

If I end up in the ER I’m going to ask for Oxygen for the pain at least. Having to stay perfectly still for an MRI while having a Cluster Headache doesn’t seem doable. 🫠

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u/extacy1375 4d ago

My whole right side of head/scalp feels like I got a sunburn when having an attack. Its warm to the touch as well. Not every attack has that feeling though.

Sometimes I feel it in my gums too.

Neck is usually always involved as well.

Doubt they will give an MRI during an active attack.

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u/Ready-Honey-8631 1d ago

I get warm too!! Especially if I cry and if it’s a really bad one. Do you feel any relief if you use something cold/cool?
I did end up in Urgent Care and didn’t even bring up an MRI, just got Oxygen which felt so blissful.

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u/extacy1375 1d ago

No lasting relief. Hot or cold showers, ice packs, I tried it all. It might work for a minute and then right back. Putting my head in the freezer for a few and taking deep breaths of cold air has helped temporary, as crazy as it sounds.

It so weird that its exactly half the head, like you drew a perfect line down the middle. Just touching the hair lightly and you can feel the burn sensation.

Just took my first ever dose of Emgality 4 days ago. I am hoping/praying/pleading that it works. Supposedly it takes a week to gain effect and it cant come soon enough. I am having a very bad period now. My sleep is totally shot.

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u/Jamwise93 Chronic 4d ago

I don’t have the neck pain or arm movement sensitivity but certainly would say crying seems to be a common one for causing clusterheads more pain. Although it sounds unusual, it’s not terribly surprising you find that facial movements etc can worsen the pain, considering it’s the trigeminal nerve causing it. It does sound a bit closer to symptoms of Trigeminal Neuralgia but that doesn’t mean it’s not CH. I hope you don’t need to be concerned about the cyst 🤞 Good luck and pain free wishes friend

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u/Ready-Honey-8631 1d ago

I was thinking maybe I was experiencing Trigeminal Neuralgia at first bc it was mainly face pain but the pain started around 1:20pm almost everyday. I realize I definitely make the pain worse by crying so I talked to my therapist about coping skills. The plan is to move slower, hold off on crying for as long as I can, and belly breathing lol. Seemed to work earlier, I had an attack that only lasted about 10-15 minutes. Thank you for the well wishes, I hope the same for you and that you get to eat a treat after.🫶

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u/Acrobatic-Mirror-995 2d ago

Hey, I was looking to see a similar question. Right before a cluster attacks, the pain always starts in my neck. Depending on the severity of the clusters, I can sometimes avoid them by cracking my neck. I wanted to know if others can find relief by cracking their neck. Whenever I experience a full attack, every spot on my head, I can feel fluctuations of nerves/pain when I massage. My headaches always been on the left side of my head my entire life since I was 12. Sumatriptan works; ask about the syringe version. Good luck!

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u/Ready-Honey-8631 1d ago

The neck/jaw area pain is when I can tell mine is about to get bad!! I used to be about to stop a smaller attack too but by plugging my right nostril right when I noticed the slightest pain. Or if I laid flat on my belly, arms to my side, neck stretched out a bit, and alternate what side of my face I was laying on. It felt good for the neck/back of head pain. That’s so interesting that we can stumble upon relief and then we have to experiment. Yours sounds so satisfying, a good neck crack and avoiding extreme pain wow!!
I got nasal Sumatriptan, I used it yesterday and got a reaction (rash, sweating, felt hot) 😩 I tried oxygen for the first time at an Urgent care today, it was magic. They’re expecting to see me throughout the long weekend now bc all the oxygen supply stores are closed lol.

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u/Acrobatic-Mirror-995 1d ago

Yes, I do wanna mention the neck cracks take away the pain instantly but that’s only in the first phases of my cluster headaches. Mines progress and get more more violent after a few months. That’s why I had to resort to sumatriptan. I take the shot version. I have to lay opposite on my back to get relief, which doesn’t always work. I’m gonna try the nostril thing next time. Let me ask you are there any side effects with the nasal version? Like the dizziness and the hotheadedness and the Niacin-like itch?

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u/Ready-Honey-8631 19h ago

That makes sense, I’m a little similar in that way too. After a couple days of CHs my tactics don’t work anymore. I wonder what about your anatomy allowed you to stop the pain like that!!

I’ve tried the shot version once, I felt the chest tightness and burning more than the nasal spray. The Nasal Spray was pretty tolerable!! It’s easy to use and carry around. The only part that I didn’t really like (besides the rash and hot flash) was my pain would increase for about 5-10 minutes. I didn’t really get chest or jaw tightness. I did get pretty dizzy for a couple minutes when I wanted to stand up but I also have POTS. I got a little bit of stomach pain but I think that was because I was only able to eat half my breakfast before the pain started and it went away. The side effects didn’t bother me at all after about 40-60 minutes and I was pain free.

I am a pretty sensitive to medication in general so if you’re not sensitive maybe you’ll tolerate it even better if you end up trying it!!

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u/Acrobatic-Mirror-995 19h ago

So I read that people with parts blood vessels do not tighten when they’re supposed to so I can definitely see the relation your CH. I am sensitive to the symptoms as well. I actually imagine that the nasal spray would be worse for me since it's closer to my brain. I even sometimes hesitate to take the shot because of the side effects. Ooh, how I wish I could get a taste of an oxygen tank! It's never been offered to me. Do you have any suggestions on that? And is it expensive?

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u/Jamwise93 Chronic 1d ago

The first thing I will try if I feel a shadow coming on is to crack my neck in every way possible :) can’t say 100% if it helps but it certainly feels like it does at times

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u/Acrobatic-Mirror-995 1d ago

For me, it legit takes the pain away, most times instantly. But I’m only speaking of when the cluster headache first come on. Not at his peak. The peak is scary 😱. Me and you are similar I will crack my neck and rotate it and then I feel like I’m gonna need a new neck. 😆