severe head pressure - feels like head is being squeezed in a vice

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Has anyone had this as a symptom and if so, what caused it for you? This has been one of my worst symptoms the whole time I have been sick. It feels like my head is in a vice being squeezed and it never goes away. MRI was clear and still a total mystery as to what is causing it.
 

Woof!

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I get that symptom anytime I am exposed to fragrances, mold, mildew, corn starch, wild fennel, dust mites, hand sanitizer and several other environmental & dietary triggers. The first thing I would do is to eliminate these things from your environment (not an easy task, but absolutely vital if you want the pain to stop), and the second thing I would do is keep a record of everything you were exposed to (environmental or dietary) when any head-crushing begins.

For me, it's very simple:
triggers --> vice-grip head-crunching
strict trigger avoidance = no head-crunching (Yay!)

For me, environmental triggers also lead to Sjogren's symptoms, vertigo and 3-day migraines, but the head-crunching comes first.
 

Woof!

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I have this 24/7. Nothing seems to help it and nobody can tell me why it’s happening. (Have had a lot of tests incl brain MRI.)
@5vforest, have you looked into eliminating common triggers for head pain from your diet & environment? Doing this gave me my life back!
 

hapl808

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I'll echo that. For me it's a combination of insanely strict allergen avoidance and trying not to trigger PEM from too much exertion (mental or physical). Either one triggers the pressure feeling, although usually mine feels like the pressure is behind the eyes in particular.
 

Avena

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Discuss this with a migraine expert. Not just a regular doc/neurologist, but someone particularly experienced in Migraine. There are far more symptoms that can be migraine than just the most known patterns.
 

5vforest

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@5vforest, have you looked into eliminating common triggers for head pain from your diet & environment? Doing this gave me my life back!
I feel pretty comfortable ruling all of these things out tbh. I have lived in dozens of places across the country, tried various diets, never any relation.

Seeing a migraine specialist seems like a good idea, I am just not very confident that they would help me (personally at least)
 
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Has anyone had this as a symptom and if so, what caused it for you? This has been one of my worst symptoms the whole time I have been sick. It feels like my head is in a vice being squeezed and it never goes away. MRI was clear and still a total mystery as to what is causing it.
Hi zee89, I have squeezing, crushing, pressure pain in my head and face. It was treated as chronic sinusitis for 5 years culminating with a balloon sinuplasty which didn't help. I think part of the confusion is that I get symptoms of allergy so along with the squeezing pain, my eyes run tears pour out and they turn red, my nose runs, it's like a cluster headache except those are usual only one sided and mine is both sides.

After the balloon sinuplasty the Drs started saying this sounds like it could be a migraine. I had no idea all of the strange symptoms that can go along with migraine/headaches. Anyway they started taking me through your standard migraine treatments: triptans, antidepressants, topamax, blood pressure meds, etc. I tried sinus rinses, breathing oxygen, allergy shots for 2 years, breathing in warm moist air, I know I'm forgetting things here but nothing helped me and it also got worse over time spreading and until I have it pretty much 24/7 with no breaks. I do think it's a great idea to meet with a Dr. who understands migraines well and can evaluate your specifics from how it started, how it's developed and what your symptoms are, and see if you respond to the typical treatments. I've also taken the shots ajovy and aimovig.

At this point I'm seeing pain management and they did a trigeminal nerve block, first on left side to see if I responded and then on right side bc I did respond. This has dramatically reduced the face pain and deep head pain, reduced the squeezing pain behind eyes, by no means has it eliminated the pain behind my nose, in my jaw, or neck, but it's a big improvement for me. And I've been surprised to find out now that I'm months out from my initial injections that it's greatly decreased my runny eyes and nose. I don't know what this means going forward other than that once they wear off we are going to do more blocks. I thought it might tell us something diagnostic, but pain management doesn't seem to have any opinion about it <<shrug>>
 

Woof!

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As a retired doctor, it drives me nuts to see other docs treat symptoms without going after the problems. They're short-changing their patients (and, if you ask me, performing medical malpractice)!

Yes, identifying migraine-triggering substances takes investigation and effort. And yes, many patients simply want a pill to make it all go away, not wanting to put the effort into making lifestyle changes. But treating symptoms while ignoring the actual problem is dumb when you can identify and treat the problem 100% and permanently with a little extra effort.

To ID some of your personal triggers, a little basic allergen testing can help. While hardly perfect, these tests are better than nothing.
(1) get skin-tested for common allergens (and know you may skin-react to things that aren't migraine triggers. For me, cats were a true-positive, while peaches were a false-positive.).
(2) get blood-tested for common allergens (false positives and false negatives both occur with these tests, but still, you may find your results helpful)

If you have have day-in and day-out head pain, know that this screams environmental triggers, and the most common ones are:
dust/dustmites,
mold/mildew (frequently linked to ME/CFS)
pet dander and
fragrances.

My recommendations (not one at a time - do them all!):
(1) Immediately put dustmite/bedbug covers on all of your pillows and your mattress. You can find these online or at any large store. My favorite covers are made by Allerease:
https://www.amazon.com/AllerEase-Wa...ite+&+bed+bug+bed+cover&qid=1631558007&sr=8-6
(2) Replace your old sheets with hotel-quality 600-count cotton sheets (no flannel sheets - mites love them!)
(3) Wash all curtains in hot water and unscented detergent.
(4) Replace all thick, fluffy blankets with a thin cotton 'grandma's quilt'-type non-woven blankets (or much better yet, an extra sheet if it keeps you warm enough). Don't trust "hypoallergenic" blankets to really be hypoallergenic. They often are treated with chemicals to deter mites, but that's not enough. And don't use terry cloth items near where you sleep (mites love terry cloth).
--> If steps 1-4 help your head feel better and your sleep improves, you've pretty much self-diagnosed a dustmite sensitivity. Pulling up any carpeting in your home (at least in your bedroom) will help further.
(5) Remove all scented products from your home. No scented detergents, plug-ins, cleaners, lotions...just put them away for awhile and use unscented versions instead.
(6) Send your pets to a groomer for a good clipping and shampoo (unscented, of course), and then set up new sleeping quarters for them outside of your bedroom.
(7) Treat yourself and your home to a thorough professional cleaning (with unscented products, of course). Ask the professionals to look for any signs of mold or mildew and point them out!
If you get sticker shock at the price, just think of this as your clean slate, your jump-off to a migraine-free life. Maintaining a clean house is easier after the pro's do their thing.
(8) Invest in a good HEPA filter and keep it by your bed (no ozone filters which are highly toxic!)

The good news is: you will probably feel A LOT better doing all of the above, so it's well worth the effort!

Now (lucky you) it's time to eliminate all processed foods from your diet for a month. Doing this will eliminate many excess starches (one of my worse triggers, personally) and many migraine-inducing preservatives, and it will help you to journal what you're ingesting, so more triggers can be identified.

Keep in mind that migraine triggers can have an additive effect on each other. For example, you may be able to tolerate a few sips of wine now and then, but add a few sips of wine to exposure to a friend's perfume and her dusty apartment, and you're sky-diving over your migraine threshold into a week of bass-drum-pounding migraines.

Trigger-hunting is one of the best examples of a patient advocating for his/herself. No doctor is going to do this for us. We need to do it for ourselves. Before I did this, I lost 3+ days out of every week for several years to migraines. Now the only migraines I get stem from neck position issues, and they're a day or two out of every month, only. WELL WORTH THE EFFORT!

P.S. If you want to know all the triggers on my list, check out my intro post.

Good luck trigger hunting! If I can be of any help, just shout.
 

Oliver3

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I have this 24/7.

Nothing seems to help it and nobody can tell me why it’s happening. (Have had a lot of tests incl brain MRI.)

I hear that it is pretty common in pwME :(
Is this idiopathic intracranial hypertension.
I've had this before usually when I've done too much.
I need to lose weight as that helps but also I think there's an altitude sickness drug that's supposed to help with intracranial hypertension
 

Tammy

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Yes, I had that symptom for years. (no longer have that symptom). I think it is caused from brain inflammation. In my case root cause was EBV.