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Does anyone else have symptoms like this

I would like to find out if anyone has similar symptoms to me. I am drained physically, mentally and financially and I want to stop wasting money on the wrong drs.

Basically I think I have a jaw issue, but a panoramic X-ray shows my jaw joint is ok - this is not gold standard - apparently a cone beam Ct scan is but I had a good maxofacial reviewing the X-ray and doing in clinic jaw work up. After that saw an ent who did Ct scan of sinuses. Showed a cyst in both nostrils (bigger in left) but he swore blind it couldn’t cause my issues - told me it was migraine.

I booked into to see a facial pain specialist- he thinks maybe hemacrania continua or possible migraine BUT I still am wondering if I should see a jaw dr so my question to anyone who gets facial symptoms is does your jaw feel like a massive issue - I am really struggling to get my head around it could be my brain and not my jaw. If you felt a kick in your leg you would bet money someone kicked you in the leg.

So my symptoms are:
.Pain/pressure behind my eye and down the left side of my face which will go into my arm at times
.feeling like the left side of my head is under water, my ear gets a fluid feeling like I can’t hear properly but I can
.Dizzyness but more like on a boat than true spinning
. Pain feeling like it’s radiating from my jaw
. Pain feeling like it’s radiating from my left sinus at other times
. Feeling mentally messed up - feeling stupid, words mixed up and spacey like I’m on some kind of drug
.Tingling/dead feeling down my arm at times
.neck/shoulder pain
. Manic feeling like I’m overexcited but I’m not/ I’m tired but with restless energy
. Tooth pain - had a tooth removed already cos I thought it was the culprit
.Teeth pressure like braces have been tightened
. Could draw a line down my face and apart from the cognitive symptoms my right side is fine
.eye twitches and left corner of lip will feel like it’s pulling down into a sad mouth (it’s not hugely visible like stroke, Bell’s palsy etc but it does get pulled slightly (twitching maybe)
. Left sided head pressure - like a fluid filled balloon in my head
. Sensitivity to loud sounds in the sense they increase my dizzyness, like they reverberate through my head.
. Messed up vision in left eye, blurry spots, black floater plays up. But I can still read
. nausea
. Ibroprufen, paracetamol and codeine do nothing
.left side of face also feeling a bit like after dental block - but can feel touch so it’s not truly numb
. Nose will run water type fluid when head is bad

.Jaw - can open widely, get some clicking when I get these headaches but usual tmj symptoms of locking, can’t open mouth, etc I don’t have

Now why I’m not sure about migraine is - I’ve had patches of time where it’s completely gone away and months and months where it’s been near daily. I haven’t identified any 100% triggers, what seems like a trigger one day may not be another day. I do not have to go into a dark room and sleep, the pain is not pleasant or easy to deal with but when people discuss migraines they say it’s the most painful thing they’ve ever experienced and need to go lie down and sleep. I would love to go and lie down because I feel so honestly retched but it’s not like it’s so painful that there is no way I could complete a task. I still work and do the chores needed because i have to and the pain isn’t as intense as what people describe. Sometimes if I actually go for a walk or do something physical the pain may lessen until I sit down again and then it’s back full force.

I’m supposed to go for a brain mri and trigeminal sequence mri but it’s more expense and I fear it will not show anything. I don’t know if hemacrania continua shows anything on mri and I’m worried about spending money on that when perhaps I should be seeing a jaw dr. I had a brain mri around 2012 which showed nothing of interest.

Hemacrania continua - I’ve had patches of no symptoms so again not sure and I’m concerned about trying the medication for it because I already have stomach/gerd issues. Am waiting on an endoscopy.

If anyone can relate to these symptoms and know what they have please please please let me know because I feel like I’m crazy and I really don’t know whether to spend money on the mri or go and see a jaw dr. The process of elimination is a financial burden. Wouldn’t mind paying for an actual answer and treatment.

Thanks in advance

  1. Hi
    Thank you for sharing your difficult experience with us. I can tell you you're not alone in experiencing these symptoms, many of which may be migraine disease. Migraine is thought to be a neurological disease falling on a spectrum from mild to severely debilitating. We can have periods of few attacks, then they can ramp up at times. It's a very complex disease as well as frustrating and exhausting. You're right - migraine is a financial burden and an emotional one as well.
    Many time facial, jaw, tooth, gum and sinus pain can all accompany a migraine attack - they sure have for me. It may be time to reach out to a doctor who is a true expert in treating migraine and headache disease. Here is more information on this;
    General neurologists may be fine doctors but have a hard time being experts in one area because they treat so many conditions such as stroke, epilepsy, multiple sclerosis, Parkinson's and more. Many general neurologists who treat people with migraine and headache disease claim to be experts but that may not be 100% accurate. A true migraine/headache disease expert is board certified in headache medicine not all neurologists have, and treats migraine and headache all day, every day. Here is more information on why these doctors are beneficial and where to find them;
    1) https://migraine.com/living-migraine/change-thoughts-new-care/

    Am I correct is assuming you're in the UK? The Migraine Trust is an org in the UK that has wonderful information you may want to take a look into. Here is that site: https://migrainetrust.org/

    Hemicrania continua is typically resolved with indomethacin. Have you had a chance to try it? We have information on this here: https://migraine.com/search?s=indomethacin

    I hope this information is beneficial and I'm sure others will be along shortly to share their experiences with you as well. Pain free wishes heading your way, Nancy Harris Bonk, Patient Leader/Moderator Migraine.com Team Member

    1. Thank you so much for your reply. I did go to see a specialist recently, he covers migraines but facial pain also. I think he’s one of the best and although he was lovely and had more ideas than anyone in 14-15yrs with the HC he still was like it could be this or possible migraine etc or if not that we can try some other things etc. I suppose I want someone to say I know exactly what this is or run a test that gives me a definitive answer. He has asked me to go for an MRI which is pricey and I did have a quiet patch in regards to symptoms so i had delayed for now until I’m a bit richer but i know I should just bite the bullet, I also am not sure I can handle the “everything looks normal” result, I think because I’m also torn that it might be my jaw and I can’t just continue to keep paying for different drs and different scans when they are stumped when it comes to answers, they just suggest seeing someone else.

      I’m very scared to try the indomethican because of how I’ve been suffering with my stomach, I think I will ask if there is an injectable version I can try. Zomig was another thing he said I could try if the indomethicqn doesn’t work. Lamotrogine also - which frightens me.

      I have other odd symptoms which I wouldn’t relate to these episodes of pain but I do notice once my head/face stuff kicks in those symptoms go away so I’ve always said I think everything is connected. I get this awful skin sensations which are all over my body and even in my mouth, throat, eyes etc - formication I suppose but I have noticed I don’t get it when the head pain is there.

      I am in the UK yes, I did speak to the uk migraine trust but even the lady on the phone I spoke to sounded unsure if it was migraine - I’m either terrible at describing my symptoms or I have a very odd cluster of symptoms.

      Thanks so much again for sharing your experience, so sorry you have been going through it also. It’s comforting to not feel alone but I wish no one was suffering.


    2. Thank you for sharing more of your story. I do wish I could tell you exactly what's going on. That's out of our scope here.
      Was there any useful information on The Migraine Trusts website in regards to looking for a doctor?
      Please keep us posted, you're not alone!
      Nancy Harris Bonk, Patient Leader/Moderator Migraine.com Team Member

  2. Hi. My heart goes out to you for all the struggle you're facing and the confusion about even knowing why.

    I want to add a thought to your list if you have not considered it already. Trigeminal neuralgia is a separate condition from migraine that can cause a lot of facial issues ... some people have both migraine and TN.

    Here's an article from one of our patient leaders who has migraine, TN, and also cluster headaches (another separate condition).

    https://migraine.com/living-migraine/trigeminal-nerve


    What do you think about this? Does it feel relevant? Either way, I figured you should have this info as you're considering trigeminal imaging.

    All the best to you! -Melissa, migraine team

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