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Behcet's Syndrome Society
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Any recommendations for Headaches during a flare?

Hi All,

I have recently been diagnosed with Behcets after 5 years of investigations and thinking I had Crohns Disease. I am now on Colchicine twice a day and also anti-sickness tabs among a lot of other meds to protect my stomach. The colchicine has been amazing for the last year however last week I had a bad flare which led to me not being able to keep any food down for over a week, really bad ulcers both oral and genital, joint pain in my knee and pain in my lower back all of which are common symptoms for me however this time I also experienced a headache like never before! The only way I can describe it....don't laugh...it felt like I had a spirit level in my head (my boyfriend and dad find this hilarious as I would never know how to use one of these in real life) anyway any time it went off balance the room started to spin making me feel dizzy and sick.

I asked my nurse specialist if there was any link between Behcets and headaches/migraine and she told me No, she also told me to reduce my colchicine which lead to my symptoms becoming worst so I quickly realised she was possibly not the best resource. I increased my colchicine to within the limit my consultant previously recommended and took off the shelf migraine tabs which seemed to help.

I have never had a headache with a flare so this is new ground for me and it was agony.....any advice would be MUCH appreciated!!! Also, I am in Scotland....is anyone else in Scotland and have a good consultant or nurse specialist? Mine seem to know nothing about Behcets....my sister in law is a consultant rheumatologist luckily and was able to tell me to ignore the advice I was given however I would rather rely on the team I have.

Anyways....thank you for reading all of this and thanks in advance for any advice.

Rach xx

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25 Replies
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Sorry to hear all your woes.

I also had terrible vertigo and agonising headacheas a sytom of a recent flare - you have my sympathy.

Nothing really helped but bucastem- an antisickness med which also helps with vertigo did help a bit. Also don't bend down or look up- some of my vertigo was positional. In the end it was found i had ulcers in my throat and at entrance to eustacian tube adding to this problem.

I had conflicting advise from various docs - I went with advise from the Behcet national centre of excellence in London.

Kind regards

I

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Thank you for your reply.

Do you mind if I ask how you were diagnosed with ulcers in the eustachian tube? I am keen to find out if that could have been my problem? The Migraine like symptoms have passed however I still have a dull headache and I want to make sure if I have another flare with this symptom that I know what to do or take.

Thanks again

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Hello my lovely. Currently suffering vertigo (I thought I was dying!) so not a long response. Migraines and migraine type headaches are a very common bd problem if you go to the behcets syndrome society - just click at the top somewhere - you will find a fact sheet dealing solely with that problem.

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Hi I have suffered with these symptoms headache, dizzy and like my ears are blocked for 5 years. My GP said its nothing just aftermath of a cold. My consultant said not BD. Then at my last appointment with consultant he said it very probably Is BD as a lot of BD patients have been presenting with this lately. He prescribed Cetirizine an antihistamine, and it helps me a lot, just one tablet a day as and when needed.

Hope this helps.

Billi

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Thanks all for your response.

Devonshiredumpling thank you and I hope you feel better. I read the factsheet however it didn't refer to any mess (as far as I saw however I didn't read it in fine detail)

Billi thanks for your tip, does Cetirizine help with the headache as well as blocked ears or mainly the ears? I didn't think an antihistamine would help with a headache.

Thanks!

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Hi, and yes it does help with the headache. I was at the Cntr Exc recently and I was told it is like mastoiditis. I also,have spine problems so difficult to know what causes what....bit like the chicken and egg...lol

All I can say is I am on meds for BD. Very very strong painkillers for my back but the only thing that helps with my headaches is Cetirizine, I guess it's like when you are blocked up after a cold and this helps to loosen it and in turn the headaches. Ps. Have had my ears checked twice and they can find nothing wrong!!!!

Good Luck

Billi

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Thank you!!

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Reading this sounds like I'm reading my own story without the colchicine working and with the crohns diagnosis and things I mean, when my headaches come I find it best to just hide in a dark room and try to sleep obviously looking at screens and things just make them worse, I am in edinburgh but have yet to see a consultant up here as I just moved here sorry good luck with the headaches hopefully the colchicine will work again soon :-)

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Thanks Paige. I have managed to get on top of things, really curious in case this happens in future. I have coping mechanisms for most of my symptoms but this one is new!! Hope you find a good consultant in Edin.

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I find that ridiculous that the nurse specialist says headaches/migraines are not related! Anyway, your symptoms are just like mine, and I was finally diagnosed after 16 years. For my worst migraine ever, it went to a 3 day migraine and I finally went to the ER. They gave me an iv with some sort of pain relief and reglan. I have the reglan prescription handy and it helps if I am having a really bad migraine, also with extra strength excedrin. I have hemiplegic & acephalgic migraines along with typical migraines and headaches. But they are greatly decreased after being gluten free and after many years.

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Thank you! I will add this to my list to speak to my doc about tomorrow! Also asking for a referral to a centre of excellence as my "nurse specialist" is pretty clueless I am now realising!

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HI, agree with Katniss 12 about your nurse specialist advise, Nurse specialist in what...mmmm. Neurobechets is very common ( as I found out recently). If it continues your consultant could give you a brain scan just to be sure. Often over the counter migraine tabs don't work and you will need a prescription for something stronger. Anyway, hope you're feeling better.

jo

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Thank you!!

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Hi Jo, I'd be interested to know how you found out neurobehcets is common, My understanding is that it is about 10 percent of BD patients who have neurological involvement, and there is a difference between neurobehcets and behcets with neurological involvement

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Hi Tigerfeet, I had heard about the headaches and BD some time ago but I thought mine were common garden migraines ands didn't link the two. Went I went for last check up and a brain scan, the practitioner said they were common and described neurobehets in some detail. I have got a clue what the difference is with regards to neurobd and neurological involvement as you describe.

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I used to take propronolol as a preventative and I carry maxalt wafers with me for sudden onset and 'pickaxe' headaches.

I had the Epley manoeuvre carried out and it helped a lot with my vertigo. As we can see from the responses above, there are many types and reasons for headaches and lots of treatments available.

The Society should be able to advise you about recommended specialists.

There are two similar discussions going on at the moment - the other one is here

healthunlocked.com/behcetsu...

Rach, did you know you can make your posts and questions privately so they can be read only by members of this group and not by anyone anywhere?

Given the sensitive nature of some of the posts a lot of members prefer to do this, and sometimes don't answer questions which are not private.

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Thanks for the advise.

I am afraid I didn't know this was public....how do I make it private?? I'm new to this can you tell!?! Thanks!

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Before you submit your post or question, scroll down to where it says

Who can view this question

select either:

Everyone or

Members of this community only.

Neuro is such a serious subject (not that anything else isn't!) that I think it should be left to Specialists to explain, I did make an attempt to give a very basic answer within my own experience and understanding in a previous discussion. I didn't want anyone to assume that if they have potential neuro symptoms they definitely have neuro BD.

My understanding is that BD with neuro involvement is where the nervous system can under function as a consequence of the disease rather than as a result of the disease, ie the disease can cause the nervous system to under function when it could function better. Neuro BD is where permanent damage has occurred. I can’t find anything that says it is common, but can find articles saying it is very rare.

There is some info about it here:

behcets.org.uk/information-...

scroll down to Behcet’s guide for neurology

and an abstract here:

link.springer.com/article/1... – click on ‘look inside’

There are much better and easier to understand articles available and there are others on this forum who could reference them more quickly than me. A word of caution is to read things only from trusted sources. The things I refer to are written by Dr Kidd, who is one of the BD Neuro Specialists who works at the Centre of Excellence in London and at the Royal Free Hospital.

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Thanks tigerfeet, luckily I studied immunology at university so I have a basic enough knowledge of the information provided and to be honest have not read anything unless it is from a reliable source or verified from sources like pubmed etc. I don't think I have neuro BD I simply think I have headaches as a symptom of my BD, maybe due to dehydration or pain or something, just wondered if anyone else has the same symptoms and what coping mechanisms work well. I can find plenty of articles which detail headaches/migraines as a symptom but none that give reliable practical suggestions for managing this.

Thank u very much for the advice re making it private I will ensure I do this in future.....fingers crossed I work it out!

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Hi my daughter has suffered really badly with headaches and your description is great!

We have been lucky to see a lovely ENT doctor who has thought about everything Grace has said and read all reports from GOSH and diagnosised her with migraines a month ago as he believes it is all connected . He has put her on Pizotifen one at night and wow has it made a difference! Took a few weeks but she is sleeping and No headaches , feeling sick and the double vision has improved.

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I am really glad it has calmed down and her meds have worked! I will bare that drug in mind! Thank you!!! X

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Hi there Rach

I have horrible migraine type headaches that can last for days/weeks and have found Feverfew [a herb] taking every day has helped to lessen the amount of attacks I have and also the symptoms.

Some people grow it themselves and use the leaves in a sandwich or salad and others just take capsules or tinctures.

It works for me so might be worth having a try if your G.P is o.k with it.

As someone else has said Dr Kidd is the Neuro expert in these matters and has written a factsheet on Headaches

behcets.org.uk/information-...

Perhaps you could print it off and take it with you when you see the Doctor/Nurse as there are recommendations of treatment on it.

Also, if you type the words "headache" or "migraine" or Dizzy" in the search bar above on your righthand side you will get a whole load of previous discussions on this.

hope some this helps

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Thank you so much! I am soo impressed and thankful for the amount of replies I have had it is so nice to speak to people who understand! I will print it off and take it to her and I will also suggest that herb....considering going gluten free from what people have said too! X

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Good luck with that Rach

The other things I thought of was staying away from processed meats like ham, salami etc as they have a preservative in them which can give you migraines. Along with cheese, red wine and chocolate. Other foods with Monosodium Glutimate are harder to avoid but it can make a difference.

Hope your G.P is o.k with the feverfew and it works for you

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Thank you!!! I didn't realise how much diet can affect things but I will look into it xx

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