Chronic headaches : I’ve been having terrible... - Behçet's UK

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Chronic headaches

Melissap33
Melissap33

I’ve been having terrible, chronic headaches lately that don’t respond to my usual Advil. I’m on Otezla and colchine and wondering if the headaches are a side effect of the otezla or a symptom of Behcet’s. And I’m wondering what I can take to help prevent and treat them since what I am currently doing is no longer effective. Any insight/advice would be appreciated :-)

17 Replies
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Hi, I’ve had migraines for almost 20 years and there’s lots you can try for headaches / migraines. Try & identify the triggers & take action on each. Mine were a mix of hormones, neck pain. In the U.K. we have the BASH headache guidelines and NICE guidelines which are both worth a read - then check the flow charts for Treatment options and go from there. The most relief I ever had was with Botox injections to the neck. I also take a low dose tri cyclic and colchicine. Headaches can be a symptom of Behcets (factsheets from Behcets U.K. available) but also other related conditions. So a question of elimination probably. Hope that helps. Best wishes

Frustrated2
Frustrated2 in reply to SCMW

Could you share where I could get a copy of that fact sheet ?

SCMW
SCMW in reply to Frustrated2

Hi, yes here is the link: behcetsuk.org/wp-content/up...

Frustrated2
Frustrated2 in reply to SCMW

Thank you!!

I appreciate it.

I have Behcet’s and also it’s affected my cranial nerves . I get terrible pain above my left eye. (please read my page for issues.)

But my rheumatologist doesn’t believe it’s all tied together that my Behcet’s isn’t not controlled systemically. It’s like several of my doctors say it does and the one doesn’t. 🤷🏼‍♀️.

SCMW
SCMW in reply to Frustrated2

That’s ok. I’ve had some awful headaches. I’ve had tachycardia recently and hearing loss and interestingly even one of the centres of excellence doesn’t think that’s linked. Although I think it is... I think you just have to be tenacious! Best wishes

Frustrated2
Frustrated2 in reply to SCMW

I agree! I find it interesting one because we live in our bodies and we know the changes we feel. I also see a functional medicine doctor. They find the root cause, I believe this maybe a link.

Do you find the functional medicine doctor to be helpful? I’m thinking this may be in my near future.

I do! I honestly believe this has helped me more, I am lucky my Functional Medicine Doctor also practices Western Medicine. I have found out so much! I’ve been doing it for over 5 years so it’s been a process, sorta like putting a puzzle together. I’ve learned my genetic pathway, what vitamins & minerals I was low in , environmental toxins, Candida(yeast) food sensitives/allergies, and healing my gut(working on that now) There is so many things/tests I have done but with each one we have learned a piece to the puzzle. It’s been frustrating at times I’m not going to lie, But I really trust this doctor, she is very passionate about what she does and “ Healing” her patients.

Where are you located? I live in the USA.

I also drink alkaline water I purchased a DYLN water bottle. (I was buying Essentia Water and it’s expensive 🙂 so now I just have to add electrolytes I use Nuun or Seeking Health (Dr. Ben Lynch brand- he wrote The Dirty Genes book).

dyln.co

Yes I take Otezla and it gave me headaches but I also had them prior as well.

I found that taking magnesium glycinate helps. I take (2pills) 120mg 2 times a day.

Magnesium glycinate is the most absorbable form of magnesium and helps support healthy muscle,nerve and heart function.

I also had prior headaches as well but not this severe or often and never with vomiting. Seeing my rheum in a few days so curious to see that she had to say. Thanks :-)

My situation is very much like yours - in terms of headaches. I can have a series or even non stop headaches through out the day on a daily basis. There are numerous occasions when headaches wake me up at night.

I have stopped asking doctors about it, because they have done so many tests - including spinal tap - and all futile, all leading to some pain pills. But I am already taking a lot of meds and have opted to not add one more to my med intake.

Closing my eyes help - I suspect it’s because I do have BD caused uveitis. Relaxation also relieves my headaches- yoga and taichi are very helpful to me.

And - surprise - eating ‘soft foods’ help too. I realised that some if my headaches are being caused by temporomandibular issues. I have caught myself experiencing headaches when biting into crunchy food, for instance.

Something hot/warm on my neck area also provides relief.

Best regards

Melissap33
Melissap33 in reply to magician

I also hate taking so much medication, would love to find some other way to prevent and treat them.

gillianTS
gillianTS in reply to magician

Hi magician

I have bruxism, well I do but I do not grind my teeth I clench them instead when I am sleeping. I was only found out because I had been suffering horrendous headache and pain in the side of my face, eyes and 1 ear which was just not going away and nobody could tell me what to do, I would cry in pain it was simply terrible.

I could not believe I was clenching my teeth, the relief once my consultant referred me back to my dentist to get fitted for a mouth splint, I wear this every night and it is brilliant, it does not stop me clenching my teeth but softens the impact which has helped greatly. My teeth showed no signs of clenching, and when I was checked a couple of years later at the hospital dentist they said that a pocket in my upper jaw had gone altogether and said this had to be because of wearing the mouth splint so I was very happy.

The other thing I have had issues with, which I was unsure if linked, is horrible pain from the base of my skull down into my shoulder, I have been to neurology they have done all the tests and scans and found nothing but recommend trying a low dose epilepsy drug which I tried and I am still using which has also greatly helped the pain. My muscles are still very tight but at least the pain in my head has been greatly improved.

magician
magician in reply to gillianTS

Hello, gillianTS!

Same here, I also have bruxism and wear mouth guard while sleeping. I still managed to get the temporomandibular jaw pain. Doctor prescribed physiotherapy for temporomandibular jaw pain but for logistical reasons, I never managed to go. Around 10 years ago, a doctor prescribed a couple of jaw exercises for bruxism - I do think the exercises help.

I also have, for a very long time now, the pain from base of skull and neck down to shoulders. It’s tolerable most of the time - but there was one time when my neck went into spasms - that was absolutely horribly painful. I was given muscle relaxant, which really helped. There are certain head positions that triggered it - notably head position vis-a-vis computer screen. After the neck spasms, I sense that certain head positions aggravate my neck and a “threatened spasm” is on the horizon - it helps when I “correct’ the position.

Another reason for my headaches: There are times that I get headaches and I realise that my body craves sleep.

It’s not an easy path to take - wishing you courage and the best of everything!

I always used to get a headache take a painkiller and it will disappear. Since I was diagnosed nearly 3 years ago, I get them nearly daily. No pain killer help. Some times it last for days. My doctor even send me for a brain scar. Thank God that was clear. Now I just live with the pain. The thing with betchets you have the well known symptoms but nothing about the headaches, fatigue and so many unofficial symptoms to get through on a daily basis. When I was diagnosed I was like ok, take colchisine, that will control mouth and genital ulcers no problem. I all of a sudden developed eye retinal detachment and I had to go through that also plus cataracts at the age 40. We need more research on betchets more professionals to listen to our daily struggles and how betchets effects our lives.

I have had to stop my clinical trial of Otezla because of the severe headaches. It is recorded in the contraindications caused by the drug. I was on Colchine too but it didn’t give me headaches. As a Behcet’s patient I am prone to headaches but the medication caused extreme ones which have cleared since I stopped it. All the best!

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