Headaches/Migraines?: Hey, sorry to bother... - Behçet's UK

Behçet's UK

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Headaches/Migraines?

atmmachine11 profile image
17 Replies

Hey, sorry to bother anyone, but I was curious. I have headaches (sometimes migraines) quite frequently, almost every day. I was simply wondering if anyone else with Bechet's experiences this and if it has anything to do with Bechet's.

-Aidan

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atmmachine11 profile image
atmmachine11
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17 Replies
Rachel-Grace profile image
Rachel-Grace

Hi Aiden

I also have headaches/migraines daily. At first I was told nothing to do with Behcets and then that they were due to medication but more recently doctors have admitted that the headaches are Behcets related.

atmmachine11 profile image
atmmachine11 in reply to Rachel-Grace

Wow, interesting, thanks Rachel. Sorry for the late reply. I don't take medication unless my disease flares up so it must not be that, but it's interesting that they might actually be related.

Snow-Drop profile image
Snow-Drop

Hi Aidan

I have Behcets and also have migraines but I saw professor Kidd from the London CoE who said they were part of Behcets.

Hope you feel better soon

Vikkie

atmmachine11 profile image
atmmachine11 in reply to Snow-Drop

Thanks Vikkie! (And also apologies for the late reply.)

lynnpru profile image
lynnpru

Hi there Aidan,

Behcets headaches can be really debilitating, I had a real problem with them when I was first diagnosed. This info from the Behcets Syndrome Society (written by Dr Kidd) is really useful I think:

behcets.org.uk/information-...

I very much hope you can get yours sorted soon - it hopefully doesn't need to go on like that for you if you can find a treatment that works.

Lynn

atmmachine11 profile image
atmmachine11 in reply to lynnpru

Thanks a bunch Lynn. I really appreciate the help. It's actually nice to know there are people out there who go through the same stuff as me, (despite the fact that the things we go through aren't always the best).

jzeis profile image
jzeis

Hi Aidan,

Here are two articles that may help. Headaches/migraines are common for a lot of BDers, BUT it doesn't mean they have neuro-Behcet's (this question comes up a lot, so I figured I'd answer it up front). You need to have other medical issues in addition to headaches to get a neuro-BD diagnosis.

(1) "The prevalence of headache in Behcet's syndrome" (2006) D. Kidd

rheumatology.oxfordjournals...

(2) "Diagnosis and management of neuro-Behcet's disease: international consensus recommendations" (2014)

ncbi.nlm.nih.gov/pmc/articl...

Joanne Z.

[Table of Contents for latest Behcet's book: bit.ly/1vgpeNM ]

atmmachine11 profile image
atmmachine11 in reply to jzeis

Thank for the help! Sorry for the late reply.

Witton profile image
Witton

Hi Aidan

Yes , unfortunately headaches and migraines are very common in BD . I have an headache every day , the migraines I have about 12 a year . However if this is new for you and you haven't discussed them with your consultant , I would suggest that you do so .just to be safe . Hope you feel better soon .

Sue

atmmachine11 profile image
atmmachine11 in reply to Witton

Yeah I have headaches every day too, thanks Sue. It seems the migraines are way less common. It's not too new for me, but you are right about checking up just in case.

Thanks again, and sorry for the late reply!

2106 profile image
2106

Hi Aidan

I have headaches with my Behcet's, I only have them intermittently but they will stay for between 4 and 6 days then go. I do hope they can sort this out for you.

Biddy

atmmachine11 profile image
atmmachine11 in reply to 2106

Yeah that sounds similar to me, thanks for replying Biddy. All of you are a great help.

AhmedFutuh profile image
AhmedFutuh

Hi Aidan,

I have migraine since I was a kid, 2005 I was diagnosed with cluster headache and 2009 I was diagnosed with Behcet's disease, a doctor told me that sever headache may also be associated with Behcet's, the strange thing the cluster headache seems to occur before BD episode always, so I think yes headache and BD related. (But that just my opinion).

Wish you the best

Ahmed Abuelfutuh

atmmachine11 profile image
atmmachine11 in reply to AhmedFutuh

Thanks a ton Ahmed! Sorry for the late reply. I'm sorry you have to go through that.

Pvancourt profile image
Pvancourt

I've had daily headaches and chronic migraines as long as I can remember, but wasn't diagnosed until I was 36. Good luck.

atmmachine11 profile image
atmmachine11 in reply to Pvancourt

Thanks for the help and sorry for the late reply! I hope you are feeling well lately.

kdgh profile image
kdgh

Yes - they are definitely part of Behcet's! I didn't used to get any, then I started getting more and more and now have "chronic migraines." My neurologists have told me that the more headaches you have, the more headaches you will get (because of the reaction in your nervous system). So treat them now ;-)

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