Headache: Does anyone suffer from unilateral... - Behçet's UK

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Does anyone suffer from unilateral tension type headache

Just tightness from occipital to behind my ear! Not pulsating not radiate to my eye

15 Replies

I experience pain and tension behind my ear at the side of my face in the temple and upwards through to neck and shoulders, I have sodium valproate prescribed by neurologist, but a few years ago a oral and maxillofacial consultant advised me to use Ibuprofen gel on the side of my face, around my ear and into my hair and it would help, I was a litt sceptical but it definitely helps.

Esr22
Esr22 in reply to gillianTS

Is this related to behcet or not?

gillianTS
gillianTS in reply to Esr22

My neurologist and rheumatologist think it might be... but everything I get they like to blame on behcet's, as they all do, gastroenterology included, my GP's are funny too they blame everything on behcet's simply because they have no idea about behcet's it makes it simple for them...

Esr22
Esr22 in reply to gillianTS

I agree with u compeletly❤️💯

magician
magician in reply to gillianTS

I do not know the proper term for my headaches, but replying anyway in the hope that it might help...

I have been almost headache free for a while now. Emphasis on almost, the headaches still creep on me unexpectedly.

That was not always the case. I used to have several unexplained headaches every day, in varying degrees, varying spots and varying types (some were like lightning strikes, etc). It was not unusual for me to wake up because the headache was pounding on my brain or ticking my scalp. And “eye aches” too - as if my eyeballs are being sucked into my brain, really painful.

My doctors initially took my headaches very serious,y - MRIs, spinal taps. I also consult ophthalmologist regularly and have fluorescent angiograms regularly. Nothing to explain my fantastic headaches. Prescribed ibuprofen or one of those pain pills. I bought them, but never took them (sounds silly, but I at least wanted to have something on hand in case pain gets unbearable). Fortunately I have rather high tolerance level...

What reduced my headaches? I am not sure, but I attribute it to a combination of different factors:

a). Started eating soft foods - I realised that chewing hard foods puts pressure on my head and jaws and gives me headaches (and jaw pains).

B). regular neck tension release exercises - I observed that some of my headaches arise from my neck and shoulder areas

C). Exercises to address bruxism - bruxism was confirmed ages ago and there were some prescribed exercises to sort of relax my facial muscles and jaw, to relieve tension caused by the bruxism

D). Wearing my mouth guard seemed to help too

E). Stopped forcing my eyes to read. Stopped reading at the first hint of tired eyes.

F.). Gave myself some kind of curfew/limit for TV time and tablet screen time - I noticed that the glare gives me headaches. Also wearing “sunglasses” every now and then when watching tv/doing tablet screen work. I put sunglasses in quotation marks because an optometrist performed some color/perception tests on me before coming up with specially tinted lenses. One for daytime use. Another for nighttime use.

G). Other relaxation efforts -mediation, yoga, taichi, smelling the roses - those sort of relaxation measures.

Our bodies all respond in various permutations. I hope you find something that works for you.

Many, very many were the days and occasions that I wished I could detach my head even for a few minutes just to escape the pain. I hope those days are really past me. But with BD, one never really knows...

gillianTS
gillianTS in reply to magician

Hi Magician

I was interested in reading your post it is very similar in so many ways to my story. I would like to know if you can put me in the right direction for bruxism exercises, I was diagnosed with this in 2016 after horrendous times, I clench more than grind, I wear a mouth guard, could not manage without it, do you have yours made for you or purchase, mine are made but considering trying a bought one to try.

I've had the spinal tap, muscle biopsy 11 months ago. My head, neck, shoulders and upper arm muscles are so tight, I was prescribed sodium valproate which has helped some but my face and jaw are increasingly awful after a period of pain free time for a couple of years.

Just restarted my yoga and pirates and neck exercises as I am not having the best of rest at night with my jaw and head.

Oral and maxillofacial consultant told me to use Ibuprofen gel on my jaw, side of face and round ear and even into hair, he was very happy for me to use this with no detriment to this area of my skin.

Thank you for sharing this 😊 x

magician
magician in reply to gillianTS

Hello, gillianTS!

The exercise that I was advised to do for bruxism is: protrusion and aperture physical therapy. The advice came from a maxillo-facial surgeon.

I had in fact typed the instructions in their entirety for sending to you, but then I saw the fine print along the lines of « not all bruxism are the same, consult your doctor... ».

The next thing that I did was to surf the internet for bruxism exercises, protrusion and aperture physical therapy. I came across a number of them, but none was exactly like my prescribed exercises.

Sorry that I cannot be of more help.

My mouth guard was made by a dentist specially for me.

I once had a horrible episode of neck pains and spasms. It responded well to doctor prescribed antispasmodic. It was so horrible, I could not even get myself to drink. I know on hindsight that the horrible event was due to positioning of my neck in relation to computer screen. With my eyesight being quite affected by uveitis and the less than friendly computer screen, my poor neck suffered so much. Fortunately I learned to listen to my body signals, the neck spasm happened only once. As soon as I feel the warning signs, I do the neck relaxation exercises.

Good luck with your yoga, Pilates and neck exercises!! The results take time, but worth the patience!!!

Kind regards, all the best!

gillianTS
gillianTS in reply to magician

Thank you for your reply, I will have a look on line for exercises and go from there, I certainly need to be doing something at the moment for my jaw, teeth and head, getting up every night taking more medication and then when I do get up it's like I've not really slept, very reluctant to increase the sodium valproate I am already taking 400 twice a day.

My dentist took xrays a couple of weeks ago and tells me all is fine but can only consider trying a different mouth splint but cannot account for the amount of pressure I am placing on my teeth and jaw when I bite down so tightly and says a new mouth splint may make no difference.

I did yoga and pilates all the time for years but my body started to go into some horrendous spasms, got more medication and I gave it up altogether so now I am slowly reintroducing it back into my life 😊 I know how beneficial it is for my body, I have ehlers danlos which I believe has started to affect my once supple joints as I age.

Anyway moan over 😁 x

magician
magician in reply to gillianTS

Good morning, gillianTS!

Apologies for raising what may be vey obvious to you: have you tried shifting to soft foods? For me, that was one of the most helpful changes that I did. There was a time that chewing even potato chips caused me headaches.

Slow sounds good. I also had to take the slow lane. I fell off the yoga/taichi wagon for a while. Now I do only the most basic targeted sequences (yoga for neck release, yoga for low back pain, etc.). No pretzel poses for me. They still make a big positive difference !

Best wishes,

Take care!

gillianTS
gillianTS in reply to magician

Thank you for your suggestions, I have been down the soft food route having soups and mashed foods which was ok for a little while but not ideal and since I find my worst time is when in bed and first thing in a morning, I do not clench my teeth during the day. Wish I knew what had kicked it off after a long period with nothing 😪

I restarted the yoga and then pilates after I was in such a mess with my body. The doctors just kept offering pain relief, I sought help from a chiropractor for soft tissue massage which was horrible at first but really helped, sadly the relief was quite short lived, I could have gone daily but was too expensive. The lady chiropractor also suffers from ehlers danlos and understood more than most, she sent me off home each time with yoga and stretching exercises and told me unless I started this again I would not get my life back in anyway, before I saw her I had been struggling, my body was as though it had ceased up and I had become frightened to move very far. I am much happier now even though the muscles, joints are still painful doing my stretching and increased my walking has hugely helped me especially my mind 😊 This jaw, teeth and head thing restarting I could of done without 😠

Take care x

magician
magician in reply to gillianTS

Hello, gillianTS,

I received an article on TMJ just now, with suggested exercises. In case you are interested , see link below. Best regards

universityhealthnews.com/da...

gillianTS
gillianTS in reply to magician

That's really thoughtful, thank you for thinking about me 😊

magician
magician in reply to gillianTS

I hope it helps!!!🙂

magician
magician in reply to magician

Hello, gillianTS!

I read an interesting article just now - here is the link. If you cannot open the link, let me know and I’ll see if I can make a pdf for you.

Grind Your Teeth? Your Night Guard May Not Be the Right Fix

nytimes.com/2021/02/16/well...

All the best

Hi, yes? I struggled for years with tension headaches / migraine. I lived off a combo of ibruprofen and sumatriptan until I saw a neurologist who recommended a GON block - the greater Occipital nerve. Whilst it didn’t quite get to that (personnel changes etc) I did have Botox into the trapezius muscles around the shoulder and upwards, followed by a further injection set which was meant to be Botox but ended up being steroid - even this tho not effective helped alleviate it. If the muscles have got so tense - I spent a long time with osteopathy & acupuncture, which only gave temporary relief, I really would not hesitate to go to the pain clinic and get this sort of treatment. I literally felt brand new, I’d suffered so long with the headaches. Best wishes.

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