I’m recently going through the process of being diagnosed with Bechets after positively responding to colchicine and having my mouth and bottom ulcers enter into remission (I have found it does little for the pain though and muscle twitching).
I’m currently lying in bed, as I’m quite dizzy this morning (I also have dysautonomia/EDS/pots/VasoVagal Syncope and EDS) and I was wondering does anyone else experience these random twitichings? I’ve struggled with my health since I was 9 years old but only over the past 10 years have I stared with these flares.
It all started with severe pain in my jaw around my teeth, a stabbing pain above my right eye and into my head, then the roof of my mouth and throat became covered in ulcers (we thought at the time it was a bad case of tonsillitis) but it took 6 months to heal, I also had sharp glass pain in my feet and hands with swelling and since that original episode, I have gone onto to continue with this random flaring. But it has progressed throughout my entire body. Spreading with a hot tobacco sauce type feeling first, followed by a bone snapping sensation throughout the different parts of my body it’s affecting at the time. It always affects my jaw, behind my eyes, hips, ears, wrists and now it’s in my left breast, neck, behind my eyes, stomach, back and thighs. My eyelids have recently started swelling and the pain in my head has moved across to both my eyes. Sometime I get a blood taste in my mouth as well. I’m also incredibly hungry, every morning, to the point of distress if I don’t eat but I struggle to eat large quantities, as I just can’t get it down my throat.
My body feels also as though I’m riddled with snakes? It’s not painful at all but it’s an unpleasant sensation. I have it in my ears, tongue, face, arms, bottom, legs and back.
Sorry for the splurge of information but no-one has any real answers for me and i’m Desperately trying to understand. For years I though I was becoming mentally unstable and now I found you guys here, I was hoping you may have some info for me.
Is this likely to continue get worse as the years go by and is there anything I can do to reduce them?
I’m also experiencing Alopecia, which doesn’t seem a commonly mentioned aspect of Bechets? It started 3 years ago and is slowly spreading but I don’t know if that’s a Bechets thing or a part of my bag of crazy thing?
As well as rashes which are not painful but also thickening of my skin tissue, especially around my left breast (it’s been investigated for breast cancer but thankfully with negative results, it’s the skin tissue that has the oedema and not the breast itself).
Sorry all of this is a bit of an overshare but I’m trying to get my head around this all and come to terms with it. I’ve experienced so much anger and grief towards my body recently, that I really would like to find some peace in it. It’s as though my body has gone into mutiny and I want to know if I’m about to walk the plank and be fed to the sharks or is there some magic sword I can use, that no-one has yet told me about?
Many thanks for your support and patience with my post.
Kathy x
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Most tests they have done, have all come all back negative...but that’s always the story I guess x I’ll have another chat with my consultant but he seems pretty set on the Bechets. Thank you for the response though, I appreciate your thoughts and support x
Your jaw, face, ear and head symptoms sound like what I suffer with, eventually diagnosed by oral and maxiliofacial with teeth clenching, not grinding, I was fitted with a mouth splint to wear every night and this has helped tremendously. Also advised to put ibuprofen gel onto my head, around my ear and jaw, I never knew you could use this in those places but assured was fine.
Was also and still get when flaring swollen mouth, roof and cheeks plus tongue, tongue has what I call tiny raspberry spots along the end. Also look at your tongue is it scalloped along the edges, apparently another sign I was teeth clenching.
I also have what I call teeth chattering which goes into my nose, eyes and head creating at times huge pressure, originally diagnosed as pots but I have recently been questioning this and had appointment with neurologist who thinks I have migraines even though I am reluctant to agree she wishes for me to try daily meditation, I'm holding off until the results of the lumbar puncture and blood tests she arranged are back.
The tremors I can liken to, mine are not visible, they feel like all over especially at rest and in bed. My body feels continuously like its burning and pain and stiffness everywhere. Feet and ankles are awful along with up the front outside edge of lower legs, muscle feels like steel... the Neurologist has also organised a muscle and nerve test which I have yet to get an appointment. I told her I felt mentally unstable and she assured me I am ok and seriously thinks my taking migraine medication will help me mentally as well as helping me sleep better, still unsure about taking long term medication, my husband thinks I should try this once my results are back.
Eyes, suffered same as you, diagnosed with dry eye and Blepharitis which causes red, swollen and itchy eyelids. Got prescribed gel drops and Hypromellose drops which have helped.
I too have EDS so know the feelings you have with being constantly challenged as to whether joints are EDS or Behcet's... what EDS have you been diagnosed with?
Colchicine, really good drug for ulcers for most people but for me I had an allergic reaction to it, toxic, it did help me with ulcer. But I would suggest if you have not had your blood checked since you were prescribed colchicine then please get a liver and kidney function test carried out, my GP was reluctant to do this even though I kept asking, some people get a mild hives and different kind of joint pain, I experienced a different joint pain and massive hives all over my bidy. My GGT levels went hugely high and eventually when these went back to normal I went onto Prednisolone which did nothing for me, they swapped this out for Azathioprine, this has helped with the ulcers but done nothing for my joints and muscles. I wake up daily with stiff muscles and they stop with me all day, its like I have run a marathon daily.
I also have Costochondritis which I would suggest you read up about too since some of what you describe fits with this. Have breast thickening on the botton ridge of my left breast which I have had checked out but it's still painful and I am still concerned about this, was told to take high strength evening primrose oil.
I changed my diet removing all processed carbohydrates and eat lots of fruit and vegetables, was really hoping for a relief in my body but not really had this but I do know in my stomach when I have eaten bread, pastry etc. it might help you with your hunger by removing refined carbohydrates, I now eat porridge for breakfast which I think has helped.
Gentle stretching of all your muscles might help, staying still makes my body worse, when I rise my feet are so sore too, I use melt bslls on my feet which I have found helps. I decided to go to a chiropractor a few years ago, I do not go now, she was doing soft tissue massage which really helped but short lived, this chiropractor also has EDS which was great to have someone understand me, she gave me sheets of gentle stretching exercises to do at home, at the time my body had just become so rigid I could hardly walk, I felt like my bones were going to snap.
Recently diagnosed as having vitamin D deficiency so started over the counter high strength vitamin D a couple of weeks ago, not sure if this is going to help any.
My body never seems to show inflammation only when I have infection but you can clearly see inflammation in my joints. They thought I had fibromyalgia, lupus etc but apparently I do not have lupus.
So much of what you have written sounds like me, I hope you can get some help soon and relief, let me know please if you get any answers to your burning, snapping, snakes and tremors.
It’s reassuring to know I’m not going completely nuts alone 😊 I will look into the the teeth clamping, ironically my hubby is a chiropractor, so I may see if there is something he could look at for me and then look into the mouth splint. Will accept any support right now. I’m taking CBD oil at the moment l, direct from Lanzarote so has some sparkly bits in it but it’s very mild and that has helped wonders with the pain and muscle cramping.
I appreciate your time in replying to me and you have given me some food for thought. Thank you very much and all the best for your own future too x
I have started taking magnesium before bed to try and stop the muscle cramps and it has stopped them but not the muscles pain and burning. I did give CBD oil a go but it did not seem to help, it was a starter one from a UK source, I would be interested in what you are using if you could share the details I would appreciate it. Also used a balm but this didn't help, smelt lovely 😊
The dentist did a mould of my teeth for the splint. Since wearing this my pocketing in between my teeth has also improved to all but one tooth which I am amazed at, still get the tongue scalloping but I also know my tongue swells when in a flare.
The chiropractor's soft tissue massage was painful but made me feel much better for s short while, I had to give it up in the end it was costing too much for any long term benefit, since then my symptoms have worsened, not because of the massage 🙂 just generally everywhere.
My instant thought was also migraine and neurological Behcet’s. I have both and whilst lumbar punctures are always normal, I showed an area of abnormality on a spect scan. It appears often in all of my body and I have uncontrollable vomiting. I was being hospitalised for migraines that were resembling meningitis or a brain bleed. I thought I was going crazy when they couldn’t find anything. I went through lots of migraine meds and found nothing was working. I also have tried a mouth guard as my dentist said some teeth and fractured etc and I have the sides of my tongue ulcerating. This also hasn’t really helped and my mouth hates the guard. The Behcet’s clinic in London said the ulcers are from Behcet’s rather than biting. Their constant neurologist was the one who did the spect scan. He thinks the ‘migraine’ Is Behcet’s. I’m now on sodium valproate which has helped to a small extent. It has taken down the frequency and severity and I hadn’t had a big attack until last Friday when I had a mega one. I’m still recovering and sipping in and out of it now. I’ve had ulcers all month too. I’m waiting for the all clear to try something like infliximab to control it.
Are you under one of the clinics? Do you see the neurologist there at all?
I forgot to mention I have Tetraplegic migraines. It was one of the first things I was diagnosed with as my symptoms originally started with IBS, fainting and then paralysis when I was 9 years old. I had a pacemaker fitted when I was 17 years old which helped in the Vaal Vagal syncope episodes and certainly lessoned the migraines. Since then I was also diagnosed with pots (unusual to have my heart rate decrease and also increase but they now think that’s the Vasculitis aspect of the Bechets causing an affect). I have Beta blockers to help with the pots aspect, I manage my stress levels, diet and lifestyle quite tightly to help manage my energy and energy homeostasis but since these flares have started life is just become tricker.
I find the CBD oil helps the migraines though and spendig my time in a wheelchair on and off through the day maintains my energy for longer and allows me to partake in my family life.
Just the twitching now that’s being a pain but I hadn’t thought about it being migraine related??? I sore Dr Mathias and Professor Goadsby in London, a couple of years back. Maybe worth another trip down to see them?
Many thanks for your support, thoughts and the time spent in replying to me. I appreciate your help a lot. It’s nice to have someone to rant to, without fearing their eyes rolling.
Most of the time I manage my life really well but there are moments when it feels a bit much.
It can be quite isolating having a chronic health condition, which means you spend a lot of time in bed, alone.
It’s nice to speak freely for a change, without worrying about the negative consequences on one’s family and friends x
The centre of excellence in London is led by Professor fortune and the neurologist is dr Kidd. I think it’s very much worth getting a referral. They are the best place with the most up to date research on the syndrome. You also see all the specialists they have within one visit. Then you get to talk about all of your symptoms as a whole and they see the bigger picture. From everything you’ve described it sounds like a referral would be useful so that they can work out and tell you what is Behcet’s related. They can’t perform miracles but some sense of understanding is helpful for our sanity isn’t it?
The scalloped side of tongue I have is through the clenching, still get ulcers tongue on the tongue, gums cheeks, roof of mouth and throat. I have the splint on my bottom teeth my sister has tmj and uses splint on her top teeth.
What is a spect scan? I had an MRI last September ordered by the rheumatologist and now the neurologist is going to look at this and requested copies of all my private MRI's since 2008.
I think I discount migraine because I think huge head pain, vomiting, bright lights etc. my mother used to have them when I was a young girl and recall her being in a dark room with her eyes covered and quietly sitting with her, my sister gets a similar form, what I experience is nothing like this it's head pressure as well as face, contracted muscle everywhere, literally feel like I'm going mad, peripheral vision loss etc. No idea if the lumbar puncture is going to show anything but I feel anxious if this comes back clear then what do I do where do I go to from here.
A spect scan is the measure of blood flow to areas of the brain. For me there is an area of hyperperfusion where the blood is being restricted by inflamed blood vessels.
My migraines range from the ones you describe having yourself, to the ones you described your mum having and worse. I’ve had one last ten days before and I get them every couple of weeks. The one on Friday included extreme vomiting, unable to speak, muscle twitching, incredible pain in parts of my body.
This is why I think being at a Behcet’s centre of excellence pays off. Their neurologist knows what he’s looking for and that brain involvement doesn’t always show up through MRIs and lumbar punctures. They are using this as proof for the biological or other treatments
Hi I have found what you have written very interesting, can you please explain the pain you feel in your body when you are experiencing one of these episodes?
Your migraines sound awful and really troublesome you having them so frequently.
Sadly I currently live in north east Scotland and do not have access to one of the CofE. When I spoke to my rheumatologist who is supposed to be the main person who cares for people with Behcet's about what migraine medication I should be taking she couldn't answer me, when I mentioned links between migraine and Behcet's she said she was not aware of this and yet I read so many people experience migraines. The only thing the Neurologist mentioned about medication was when I had decided I wanted to try medication it needed to be medication I take every day suvh as beta blockers that scared me.
Got bad body flare going on at the moment its also creating all this thin water/ mucus from my nose just drips... my mouth was quite swollen during the night I got up and used a soluble prednisolone mouthwash which helped.
Yes I get the nose thing too. It’s just like sinusitis.
With migraines I always have a lot of stomach issues. I had stomach migraines as a child where I’d get the pain there and uncontrollable vomiting. I still get this now. I get a spasm in my stomach I can not control and it rejects everything. This can go on for up to 3 days.
The pain I experience is usually on my right side. It is in my head, eye, neck and into my shoulder. I also get an incredible pain in my lower back. Like I’ve been beaten up. After from the severity of the vomiting I find breathing painful as everything is so bruised.
I also can have days where I get my digestive system turning off. It isn’t constipation but nothing moving at all. This time that coincided. Gastro paresis has been mentioned.
Migraine or headaches are associated with Behcet’s and EDS. There’s info on the Behcet’s Society website I think. They often don’t respond to triptans so I went through all these medications and they weren’t that helpful. Sumatriptan (imigran) does sometimes work for me if I catch it early enough. Sodium valproate has been the biggest improvement for me but it’s not solved them.
Thank you for your reply, it is interesting to learn how your migraines affect your body in different ways and will be interesting to see if my taking migraine medication improves anything else in my body.
This pressure in my head only really started, well when I became aware of it, in 2012 after the tragic death of my father, I dealt with the police investigation and coroner for my family which went on for nearly a year, it was a great time of stress for me and I still do not think I ever grieved for him properly because of everything that was going on, this is what I believe was a trigger. I don't ever remember having issues before. I cannot now cope with confrontation it really makes my face and head very pressurised, I just have to try and walk away, it makes me feel like I am unable to cope, I don't recognise this person at all and I hate it.
I wonder why the neurologist wishes for me to take daily meditation for migraine, I wonder is it because the pressure is there every day...
I had not known about migraine and the nasal fluid like you say like sinusitis until I recently read about it, very odd.
I am very lucky compared to a lot of people with BD. I would get a vitamin D test done as this can cause terrible pain. Take high dose daily definitely worked for me. Leg pain, back pain gone. Also try a natural toothpaste as it seems to help with getting rid of the soreness and swelling and my ulcers have now stopped which is a godsend as I was having 25/30 at a time. I take linseed/flax oil vegetarian daily which I think helps also with inflammation. I hope things start to get better for you as it is horrible to have so much pain and symptoms one after the other. I find it incredible that one day one part of your body is screaming and the next it has moved on to another part. Take care xx
I used to get 'full body migraines' which gave me a horrible hungry-yet-nauseous feeling and a sensation as though a family of ravaging rats were churning around in my stomach. But could have been snakes! Plus a lot of muscle twitching and spasming - including jaw clenching at night - with shooting pains and high levels of fatigue and general malaise.
Mine were very much connected with the menstrual cycle. It's nearly 10 years now since the menopause and they no longer occur, thank goodness. Other Behçet's symptoms were brought under control with colchicine - it took 6 months to reach full effect. Then swapped to hydroxychloroquine after 2 years.
Magnesium helped quite a bit with the twitchiness and spasming. Eschewing products with sulphate based detergents has helped skin, scalp and gums (they put it in toothpaste as a foaming agent). Also increasing baseline levels of fitness with optimal diet, vitamin D ans B12 supplements and lots of gentle exercise.
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