My Bechets was diagnosed in Dec 18 and was under control with colchicine and I was such a high flyer at work but in early 2019 stress levels at work increased for me with increased workloads and no support and my Bechets became more extreme and I experienced symptoms I had never encountered with longer sitting ulcers, migraines, fibromalgia and my medication failed to control. I began to forget things, act irrational and out of character was put on azothiprine which also failed me. I am now seeing mental health specialists for anxiety, stress caused by work. I feel I have no control and not sure how I became so forgetful and unable to remeber things in March/April 2019?
I am unsure what I went through? From organised and under control in 2018 to becoming a wreck in 2019.
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One of the effects of Behçet’s disease is atypical meningitis. I had much the same symptoms as what you’re describing and it took me quite a while to recover to an extent. Are you still working? If so is there any possibility of retiring on a disability pension? I had my own business and although I battled on for a couple of years I had to go on a pension. I don’t wish to sound negative but sometimes we can battle on too hard or for too long, when for our own health’s sake it’s better to take some of the stress out of our life.
Hi Lesley your advice is great. I just feel I have such an ordeal in 2019 becoming forgetful, stress, anxiety in a few months and became a heap of tears. I just wanted to understand how bechets is affected by stress.
What is atypical meningitis? I have been signed off sick with stress by my GP at the moment.
You’ve asked the right person 😂 as my business was teaching medical terminology. The letter a before a word often means no or not. So in this case it means not your normal meningitis which could be caused by a bacterial infection. In the case of Behçet’s disease it is caused by the disease itself such as autoimmune or auto inflammatory. Hope that helps.
Leslie, is there anyplace where there’s documentation about this atypical meningitis. It fits my symptoms to a tee. I’ve struggled on and off. I was diagnosed with a silent stroke. They still won’t say it’s coming from my Behcet’s. I’m taking Remicade, however I fight tooth and nail for that. My rheumatologist thinks that I’m being over treated even though without it I was using a wheelchair. He’s frustrating, but I’ve been through so many now we have kind of agreed to disagree and as long as he allows my Remicade I see him. He’s a chauvinist and my husband goes to my appointments and pushes so that helps. I’m sorry to give you so much background but I wanted you to understand my predicament.
The information below is from the John Hopkins website. I was given the information while I was in hospital and the doctor opened a textbook she had with her and read out from a page. Aseptic means not bacterial, it doesn’t mean exactly the same as atypical but it is similar. BTW this was the first thing that came up when I Googled Atypical meningitis and Behçet’s Disease, there may be a lot more information.
Hope that helps Lesley
Behcet’s may also involve the protective layers around the brain (the meninges), leading to meningitis. Because the meningitis of Behcet’s disease is not associated with any known infection, it is often referred to as “aseptic” meningitis.
Just in addition to the above, I was really sick for a couple of years. Lost my memory, couldn’t recognise things, lost the ability to do maths at all, and quite a few other cognitive problems (including forgetting all my PIN numbers 😂).
Thank you. I have had the same issues. I have gone to Cleveland Clinic saw specialist there even and I’ve received nothing. I don’t work now. My life is as non stressed as life can be, however I am a mom who still needs to care for children who have needs. Those children also have complex needs. I make use of some really good tools to keep my life as stress free as possible and I succeed very well. However economic and sometimes personal issues conspire against me every once in a while. 😉 I appreciate the information!!!!
That is a great advice, I worry for my son, he tries not take stress family, work...but inevitable at times...glad to see you here...wishing you nothing but the best, you have been through a lot....
Hello; I wrote to Dr. Umit Tursen in Turkey knows Behcets very well, published many articles online, and he told me this about our son " stress free life is vital for Behcets"....he wrote those lines and I have them pinned to wall for my son...he needs to control his frustrations, not take things to the heart...nothing personal...not his problems...I wish you the best..
Really sorry to hear life has been difficult since your diagnosis - reading your post was like reading my life history! . . . . Firstly, I've never heard of 'Atypical Meningitis' so I can't comment on that condition but personally I think it is more due to your Fibromyalgia . . . I was diagnosed with Behcets and Fibro in the mid 90's. Throughout the early 2000's I had identical symptoms/struggles as you've described. My job also became very stressful and I was in a somewhat un-supportive relationship. My symptoms worsened over time, especially the cognitive issues which I found extremely frightening. Eventually, after many years of support from my workplace Occupation Health Physician, I was medically retired. Not neccessarily because I was disabled - I just could no longer perform the duties of my job as well as I had previously. I worked in the community with terminally ill patients and would struggle daily to be able to write their notes up mainly due to the cognitive issues I was having. My diagnosing Consultant once gave me the best piece of advice I will never forget - he explained that stress (the drip drip type of ongoing stress - not daily stress of getting stuck in traffic) was the single most detrimental factor to my health conditions. I have now been medically retired for some years and it the best decision I made in my entire life. It most definitely was not a easy decision after almost 25 years in the same job but you have to put your health before anything or anyone. Good luck with everything and feel free to message me privately if I can help in any way x
Thank you, I also feel that retiring was the best decision I have made in regards to my health. I didn’t know that foggy brain was a symptom of fibromyalgia.
I can relate to everything that you have written and besides all of these feelings I literally felt like I was going mad and at times not in control, I developed a fear of being in places where I could not escape from, even shopping precincts and aircraft, it did not need to be some tiny dark cafe. As well I got something that I can only describe as gentle teeth chattering, it was not noticeable a d only I felt it when I was a rest, in front of the TV, sat reading, in bed etc. It was horrible but I truly felt all of this was linked. My them rheumatologist said it was brain fog but everything I read about really did not fit with all of what you say and the above and it just continued untreated.
I kept on and on to my now rheumatologist and eventually she referred me a neurologist, I had already had a brain scan and this showed nothing accountable for how I was feeling. My appointment eventually came through and I sat with all my notes and went through everything I believe was related to my brain and head, sounds crazy but I wanted someone to listen who just might be able to help me get into a better place. I was surprised to hear the Neurologist tell me she believed I had a kind of migraine, I was very dismissive and she said 'I can see from your face you just don't believe me' I didn't, I recall my mother's migraines and how debilitating they had been for her and I never had this or what I would term as headaches very ofter, we discussed everything I said at length.
I agreed with the Neurologist to try some medication to see if this would help me. I also want to add here that with all the head stuff I also had/have tense muscles in the right side of my neck coming from the base of my skull, tight shoulders, biceps and calf muscles so the Neurologist also arranged for a nerve and muscle test, everything with Neurology takes ages, eventually the guy comes from Edinburgh to do the test and he is a little surprised by my muscles don't stop moving when they were supposed to so I was referred for a muscle biopsy, just had this in February. But I was told because I am taking Azathioprine this should help muscle tension issues but it has not for me, it's also one of the treatments for myositis but I was warned because I take this my muscle biopsy might just come back with nothing showing because I have been taking this drug since 2018, and that is exactly what happened no result from the biopsy with a note about the Azathioprine...
Anyway getting back to the migraine treatment for the weird head... I started of on a epilepsy medication having a lesser dose, called Carbamazepine it started to help but in a few weeks my body did not deal with this so I was then put on a other epilepsy medication called sodium valproate which I have now been taking now for 6-7 months and I really have to say this has been very helpful, I have my life back, I can function, I don't feel like running away, I feel less stressed, the fog I would say is all but gone most of the time, the filing cabinet brain has reappeared and I can deal with people and complicated matters with so much more calm than I have done in long while. My muscles are a little less tense, especially from my skull which is a huge improvement.
I initially blamed the traumatic death of my father and a fortnight later my stepfather who raised me had a massive stroke in August 2012, I took on much much more than I should have but I felt like I was the only person who would do a good job in discovering how and why my father was found deceased in a canal and so I took on the police and I investigated his life right up to the last time he was seen alive. I took over lots of things for my mother to try and help organise my stepfather transition from hospital to a care home where he lived fully functioning other than being paralysed all down his left side until 18 days ago when covid 19 was a factor in his passing away.
I have had many many upsets during the time from 2012 until my seeing the Neurologist; finally discovering, after 40 years, I had Behcet's it was 3 years ago on 26 April, my stepfathers birthday, I have gone through so many tests, MRI's, xrays etc since as well as seeing so many different consultants and still am but somehow over the last six months I have become much better in my head and feel I am dealing with life much better than I have a d this has to be the sodium valproate medication.
I left my full on executive job which I absolutely loved many years ago because I just couldn't cope with the pressure that I usually thrived on, had I received the help I have now I most definitely would not have given up working. Please seek out help even if you have to pay to see a specialist yourself. Mental health specialist might be able to help but for me I paid for all of this and it did help and I still look back on my notes from that time but this did not give me my life back. You need to get your life back and hold on to it.
please get your b12 levels tested. colchicine depletes them. I was on colchicine for 5 years and slowly became deficient. you sound like me. i turned in to complete scrambled eggs.
Now i have pernicious anemia. anything under 400 needs supplementation. you can do sublingual supplementation with methylcobalamin if you dont want to do the shot route. I prefer the shot route tbh but started initially with the sublinguals- it takes a few weeks to start to feel the effects, but i highly recommend b12 for all behcets. we tend to be on the lower side.
Hi, this sounds familiar. There’s no magic formula, but when I’ve got to that place it’s just the stress or extra work that has pushed me over my baselines. Check out the recommendations on the London CoE website - these include mind of or health by breath works and frantic world. There is also a piece around acceptance which I’ve found very hard and being kind to yourself. This was pitched recently to me as the kind choice is the one you know to be right for you. Set the boundaries say no etc. Anyhow good luck and I hope this helps.
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