I'm being investigated for headaches which I have had for a couple of months. I'm having an MRI (brain) in a couple of days to see if anything shows up, then I will see the neurologist. If it turns out to be neuro Behcet's, as I have a diagnosis of Behcet's anyway, I'm wondering if it may affect my hip replacement at the end of November. I know you cannot give medical advise but I was just wondering if anyone else has not been able to have surgery because of this.
TIA.
Good afternoon Sherlock, there are two questions my Neuro asked me that the Rheumatology missed. What has your vasculitis been like or have you had vasculitis history/involvement. I was constantly treated for migraines that varied. I was referred to have a MRI of the brain however had a stroke in my spine. And the reason for that was the vasculitis that flared. So please check this too. Hope this helps a bit.
Thanks for your response, as it stands I have I have had a headache now every day since September. I think the neurologist thinks it might be migraine but I don't. My husband has bad migraine and has Ajovy injections monthly, and I have tried his triptans, two different ones with absolutely no effect. I also have strange episodes of feeling unsteady and almost dizzy, I don't know much about neuro Behcet's but I want to find why I have such bad headaches all the time as its making me feel quite unwell. I will mention what you have told me at my appointment.
Good Morning Sherlock, There is an awesome article about headaches on the bechetsuk.org website. Last year during the Seminar there was a Prof that discussed the headaches and that people with Bechet suffer from chronic headaches, also how to distinguish the one from the other. However if medicine as strong as those meant for migraines does not help you it sound to me like it needs further investigation. You can not go wrong if you register with the Bechet's society as their team is fantastic. Their Consultants I would say are the world's best in Bechet's research and treatment. Please let me know what the Neuro finds and will keep you in my prayers and thoughts. Be strong💐🌼
Hi, can you tell me where on the website I csn find the article on headaches please? I am having chronic headacges abd they are being investigated. MRI was normal
Hi Alex I shared the link it was under Medical Factsheets, I am so very happy the MRI was clear, that is absolutely the best news ever
hi, there. I too have Behcet’s I have lesions on my brain as well but have had mostly normal lumbar punctures. There’s a specific type of lesion that is found for Neuro Bd and it’s pretty rare. I have a specialist in neuro immunology and my migraines have actually been found to be hemiplegic migraines because mine do paralyze me and they are chronic. So generally MRI that is a Tesla 5 is really important it has better imaging and a lumbar puncture. I went through a period of so much testing at one point I glowed. I’m stable for the most part. I still have the chronic migraines but at least I’m not paralyzed now for most of the month. Migraines for me are the one part of my Behcet’s that can’t be controlled well. I wish you the best.
Good morning Zuzu798 , I'm very lucky as I attend the Liverpool CoE and so I'm sure they will do their best to find and treat the cause of my headaches and I just need to be patient.
Thanks for your best wishes and I will let you know if I find anything out.
Hi SherlockI would be interested in any answers you receive. I went through a similar process with brain MRI, spinal tap, blood tests and another nerve study. All these returned normal. Neurologist adamant I suffer from migraines but like you mine just appeared and did not ho away. She kept saying I know you do not believe me but you can start with migraine at any age and it presents itself in many ways. This was after my repeating that my elder sister and mother have/had chronic migraines.
Got started on a couple of migraine medications which made me feel ill. Moved on to sodium valporate and took this for a couple or more years but it never got rid of this feeling of a movement in my head like a tiny internal vibration with ever so slight unnoticeable teeth chattering. I started to feel quite ill again and even more lightheaded so I decided the medication was the cause and gradually stopped taking it. I then got given pregabalin next but after collecting my prescription abd reading the leaflet I decided not to start taking them.
I am now free of any migraine medication and my headaches as well as internal vibrations in my head are much better. No idea how or why but I feel better in other ways once off the medication. I recognise if I am put under pressure by many everyday situations I get headaches and more pressure brings on the vibrations. It is not perfect but I honestly prefer life now without the medication.
The neurologist also decided to tagged on another diagnosis of Functional Neurological Disorder (FND) when asked what this meant for me she explained my head was like a scrambled computer... no treatment so just have to learn to live with it! I was packed off out of the door and that was that. I learnt later help is available and then the oral and maxillofacial surgeon gave me an NHS FND leaflet which explains more, but she added that the hospital no longer have a department treating this, the Neurologist should have been honest and told me this. Anyway futher reading has lead me to believe that my headaches are likely associated with this strange FND diagnosis and part of what I need to do is relax more which I do find hard to do.
I introduced some B vitamins, despite all my micronutrients being in the normal range, some were borderline. I also take other supplements to hopefully help. Just on the 2 prescription medications now.
As well as migraines the other thing that never leaves me and never explained or diagnosed was the burning feeling on my tongue and roof of my mouth. Spent decades trying to deal with this and then referred to oral and maxillofacial, I mentioned it here and again being advised to take amitriptyline, as a nerve related issue, or I could go back on migraine medication. I took amitriptyline for 9 years and believe this has contributed to my ill health, once taken off it my ill health went mad. Anyway I refused to be drawn into going back there and the consultant discussed a natural therapy, after I told her about my not liking prescription medications and would always try alternatives first. To my surprise to recommended that I try Alpha Lipoic Acid (ALA).
I started taking ALA about 3 months ago, 3 x daily, and I cannot believe the difference in my mouth, the burning sensation has not completely gone but massively improved and my mouth knows when I need another dose. I also think this has improved my headaches.
I hope you can get some answers from the MRI and ultimately help in getting without your headaches.
I have had head pain, on & off, since childhood. Currently, I have mixed success with Amitriptyline. You may find it helpful to know that there is an excellent Penquin book called 'Managing Your Migraine' by Dr Katy Munro. Available on Amazon. Katy is a migraine sufferer herself. She previously was a GP and now works at the National Migraine Centre, a charity in London.
That’s actually how my Bechets started. I had recurring and persistent headaches and was told it was tension headaches, that I needed glasses, that perhaps I had meningitis.
My neck became really stiff and I couldn’t move out of bed without vomiting. I had an MRI scan which showed a blood clot in my brain and I spend several weeks in hospital on blood thinners before being diagnosed with Bechets.
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