Hi all sorry I don't get on here that often and that it on,y seems to be when I want something! Like is crazy with a toddler and this dreaded disease.
Since having my bubs I have been really unwell and it feels like I've not had much help even though I go to the london COE. I take 150 aza 30 pred 0.5 colchicine 20 omep for tummy ulcers anti sickness med citalipan 40mg as I had PND after my baby was born sevradol 10 and zopiclone to help with sleep when the pain is too bad. Now I've bored you with all that my question is as well as the constant joint pain ulcers etc. My headaches are so bad almost every day at there worst I go blind which is absolutely terrifying especially now I have the little one and for a long time was told they were seizures I have now been told they are basilar migraines. Before I was told what they were I had tried many of the treatments gabbapentin, sumtripan, topirimate, amitriptyline and I am sure some others an now 40mg nortriptylne but nothing seems to work and I'm desperate. Since the 13yrs that this has started after my tia I have had a headache for at least 11 of them when my daughter screams I could cry it hurts so much I can't live like this anymore. Does anybody else suffer from these or similar and have found a treatment that works? Most days they are so bad I think I'm getting dementia as my memory is so shocking. Sorry for the long post just don't no what to do anymore.
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poshcat
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Hi and sorry for all your pain and worry. There is a Dr, Desmond Kidd, Neurologist based at the Royal Free Hospital in London. He is the top guy for Behcets headaches. Just google his name and you should be able to find information on contact details, I've heard he is very obliging. You shouldn't be going through all this and obviously need more investigations and help.
I agree with Billi and Dr Kidd is the neurologist at the London C.O.E and a member of the Medical advisory board of the Behcets Syndrome Society. He is a very caring Neurologist and knows a lot about Behcets, in particular headaches. He has written a factsheet about headaches which might be interesting to you and although it doen't actually mention Basilar Artery MIgraine, I am sure would be most helpful.
Thank you it was him who finally told me what was going on and started the nortriptylne and he does seen very good I just always find it helpful to go armed with what's helped others. As it was only talking to a fellow suffer that I demanded tests and was diagnosed after being ill my whole life and seriously ill the last 15 years a gp actually told me she would eat her hat if I had Behcets I still keep meaning to take her in a sombrero! Lol
Have you tried contacting Dr Kidd and letting him know that you are suffering still as he may have something else to help you. Sometimes you have to try many medications before finding the right one. I know you have tried many already but now you have the diagnosis for the headaches, there maybe different approach that could be taken. I have heard of nerve blocks and botox being used but do not know if they would be appropriate for your condition.....that's where Dr Kidd comes in.
I also found this charity/organisation called the National Migraine Centre on this link
Perhaps they could help with advice or more information so you can get more proactive in seeking a better understanding and/or solution. Having tried all medications, perhaps something like hypnosis my help but look for one that deals with medical issues......they are about and maybe able to help.
Don't know if any of this helps but you can come here any time you want...just because you don't all the time it doesn't mean you shouldn't. Sometimes we think our conditions are too difficult to talk about, but we are all on a journey ourselves and so understand this....... Plus you have got enough on your plate with your headaches and a toddler.
This is sounding VERY familiar. I haven't found a solution to the headaches yet although I've had a little relief from adding Pizotifen at bedtime. We are on all the same meds...I have a few more (32 in total). I would assume it was safe for you.
I haven't found the London BCofE that much help. Nor did I find Dr Kidd actually DID anything. Sigh. Wish I had the answer for you.
Have to go...my autistic son is currently flinging angry bird plastic toys at the cat!
I am sorry you haven't found a solution to your headaches as I know they can be life destroying and very difficult to cope with.
Have you been attending the London COE long as my thoughts were that sometimes it can take quite a while for Consultants to get a grip of what is going on with a patient.
I personally don't attend the COE and see my neurologist locally. I have been seeing him for several years now and been through many trials and tribulations with him. However, I have stuck with him and over the years we have found some things that help and others that haven't. As time went on I have been able to stop taking a lot of the medications other Dr's had given me, because we found that often enough they were the cause of some symptoms or made them worse.
That's the nature of the beast with this condition and so sticking with the Dr's and being proactive in finding solutions for yourself...I think is the key....it doesn't always work and sometimes you have to find a Dr that works for you.
Hi, Sorry to hear you are suffering so much. I can't really help but agree with the others, I'm sure the clinic (London COE) would be able to help you further if they knew how much you are suffering, in particular, Dr Kidd, please contact them and ask to be seen as soon as possible. X
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