Hello!
Unfortunately I experience the typical Behçet’s headaches. The have become more frequent, getting worse when I am on my cycle. Excedrin and Tylenol is about all I can do for them unless I go to the ER. Does anyone have any at home remedies? It’s causing such bad eye and headaches pain for me lately.
Niki318,
I’m sorry you’re hurting! 😥
I also have had daily headaches as well as migraines so I understand the pain you’re in it’s miserable.
Dehydration can also give you headaches.
It could be caused by food sensitivities. Have yuu tried eliminating common food sensitivities? Dairy, Gluten, Sugar, Caffeine?
Try Nuun tablets for dehydration or add more salt like Redmond Real Salt
Not idolized table salt. (big difference)
I see a functional medicine doctor along with all my specialist.
Functional medicine looks at what your body is depleted from and also tries to find the root cause of your health issues.
I take a good quality brand of magnesium glycinate.(Not all supplements equal, do to added fillers etc)
I Started out with 1 and work my way upto 2 sometimes more.
I’ve put added a couple of articles for you too look at and the products I mention.
I hope some of this will help you or at least give you some relief. It’s hit and miss for me depending on if I’m in a flare or not.
My flare in 2017 involved my cranial nerves and it’s still not under control as we haven’t found medication to help me systematically.
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I take Vit B2 Riboflavin daily to prevent headaches on advice from Neurologist. The Neuro also did examination/observations & ordered MRI & MRA, brain & upper spine, plus carotid artery ultrasound.
He let me try about 10 medications one at a time. After failing with all of them for various reasons, he then had me try the Vit B2 Riboflavin & it was a great success. It’s a Mitochondrial supplement & thought to act on Mito of cells in blood vessels.
I continue to remove foods from diet which cause me either true allergy or food intolerance.
I still get occasional headaches & migraine. If I do then I’ll take aspirin & paracetamol. Hydrate. Have a hot shower. Retreat to bed, darkened room.
Regarding eyes I see local optometrist regularly. Have also seen Opthalmologists & hospital Neuro-opthalmologist.
Hi, could I ask what strength and is it just the one dose a day? Thanks Lesley
Hi lesleyg, I take Nature’s Own Vit B2 100 mg each tablet.
The dose is on side of bottle. For energy production take one tablet daily with food.
For Migraine (prevention) take 4 tablets daily with food.
The original studies were done on 400 mg a day. I’m not sure if it was all at once or spread over the day.
The tablets used to be soft & I would break them easily into quarters. I just worked out the dose that helped me was much less than 400 mg.
I’ve now been taking just one tablet a day. Suddenly getting a lot more headaches but I think it’s from all the bushfire smoke in our air over last month or so. Is affecting my airways & mood as well. Going to try masks for awhile it is so bad here.
Thanks for that, I’m going to give it a go as a bit of an experiment. I know when I’m going into a big flare when the headaches start. Interestingly it is always on my right side and just to the right of midline. If things progress then I also get a headache in the occipital region. A couple of years ago I had two small strokes more or less in these areas but am not sure if they were directly related. (It did make everyone sit up and take more notice though).
We are down near Wollongong and are getting a lot of smoke from down South. Today the air pressure was quite low with some storm activity threatening and that almost always causes some form of headache with me. Thanks again Lesley
Wow lesleyg sorry to hear you had those two small strokes. Did they do any more vascular studies on your brain? Did you have high blood pressure at the time?
Yes I am really sensitive to changes in atmospheric pressure too. Smoke from fires up north still bad here. I’m sure it is causing me to flare. Got incurable chronic nasal septal ulceration flaring daily. Skin breaking out across shoulders. Ulcers on heals throbbing from blisters from new shoes. Sternoclavicular joint swelling from bone spur there (crazy inflammation there... weird bone stuff going on but did get ultrasound... does not really explain what is going on but when I am sick that is flaring too!) Bedridden today from fatigue.
Had oesophageal spasm so got to go back to Gastroenterologist next week. Also got referral back to Prof of Immuno/Rheum/Opthalm. for what it’s worth. Have not made appointment yet. Two private ENTs cannot cure nasal septal problem (I guess realistically there maybe no cure & just have to control it.. so depressing as it makes me feel constantly ill) Hospital said Cat 2 then never gave me an apptmt in over a year. I give up! Hence will see Prof instead.
Hi, can you PM me re where you are in relation to the bushfires please? We are reasonably safe but have bushland across the road. I have had ulcers on and in the nose which are extremely painful and unpleasant!
I also suffer from esophageal spasms they can be quite painful especially when eating!
Hi Niki318
I find laying in a quite dark room for a couple of hours really helps me, also lay flat with no pillows. Naproxen seems to help with mine too. Give it a try and let me know if it helped 
I just started taking aimovig shots to prevent headaches. They are once a month and you give them to yourself. I think it has cut my headaches at least in half. Also, I have headaches to the right of midline like Lesley and they have been trying to figure them out because they start like pins and needles, go up the right side of my head, and then I am lost in time for about ten seconds. Then I am fuzzy on my thinking for a couple of hours. No one has been able to figure out what's going on. Stress triggers them. But the aimovig has helped overall, especially with the migraine and tension ones.
I think I may have mentioned this before but in a textbook that medical students use (will try and get the name) it mentions the typical Behçet’s being to the right of midline. I can’t say I have had pins and needles but often I will get a sharp stab of pain through the right eye. It has been suggested that these might be migraines. One disturbing new symptom I’m getting is trembling hands which is accompanied by a wave of tiredness which is so strong I have to lie down. There is always something.
I have just started with trembling hands too. I am an elementary school teacher and try to write on the board and my hand starts shaking all over the place. Also print in makeup is getting harder every day without poking myself in the eye! I am always tired, but I have been more tired over the past year than any previous...I kid around with friends and tell them it must be because I turned 50 this year! I am sorry you have had such a rough go of things. You have had quite slot over the past while, but you always seem to be positive. I don't know how you keep your happy attitude, but I look up to you!
Thanks for that. I'll admit that I do have my days. My father has always been a very sick man. Our family has always just got on with things. If a crisis pops up instead of just dropping our bundle we try and think of a way to deal with it. The other thing is we have always been Bible students, so that gives us a lot of peace. I was just reading something this morning and there was some good info on Living With a Chronic Illness on the JW.org website (sorry I couldn’t work out how to put a link in). Just getting back to your situation, I was forced to take early retirement- is it possible for you to look into that? Cheers Lesley
I have looked into it a little bit, but I think I am going to have to get through seven and a half more years of teaching so I can get a full retirement. I just keep hoping I can make it that long by taking a day at a time. I am in the US and disability is really hard to get. I could retire in two and a half years,but then I would only get half retirement and we can't make it on that, so "heigh ho, heigh ho, it's off to work I go!" Things have gotten quite bad the past two years, so they tried putting me back on colchicine in August, but I had a violent reaction to it. I hate prednisone because I can't sleep when I am on it, so we have just been working with meds that cover symptoms. I have been on diamox (acetazolamide) since 2005 to keep my spinal fluid down because I have a pseudo tumor cerebri caused by venous sinus thrombosis. But now I am starting to have problems with the medication. They think it is giving me kidney stones. I had 6 at the end of August, so they want to get me off that, but they are still trying to figure out why my legs, feet, and ankles have been swelling terribly since August. No one can figure it out. So they aren't messing with meds until they figure that out. They keep telling me to stay off my feet and I have to say, "You do remember I am a teacher, right?" Anyway, still trying to figure things out. This forum has helped me a lot. It is validating to see that others go through the same things and have ideas for helping with different issues. I've learned a lot. You are in Australia, correct? Which part?
I checked out your JW.org site. It's got a lot of good information. I can see how it brings you some peace. I am a member of the Church of Jesus Christ of Latter-day Saints. I often read the Bible and The Book of Mormon for peace as well. We have a website with some good videos about the Bible and Book of Mormon and other information about service opportunities and things like that. It is ChurchofJesusChrist.org. There is even an app to read the scriptures called the Gospel Library. I have it on my phone so that when I am struggling a lot, I can just pull out my phone and read scriptures if I want to. It's nice to have religion to help with this disease. I think it is a blessing with the darkness of the disease to help keep focused on the light. I hope you have a good and pain-free week!
I thought I was having a rough time until I read your post. What happens to people who just can’t function? I suppose we dig down into our reserves - when I look back at what I did prior to getting the pension it is amazing what we do if we have to. I am awake at the moment (1:30am) due to increased prednisone for a week or so. I was thinking after the post that that I put up this morning about having a positive outlook- we spend a lot of time and effort on physical health but spiritual and/or psychological health is also very important for wellbeing. I’m glad you have the app on your phone. I’ve got one as well with about five translations. One of them is called Byington’s translation which is worth reading just to bring a smile to your face. (The translation must be about 100 years old and without being sacrilegious - he has such a funny way of putting things). By the way I live just out of Wollongong which is on the beach, but has mountains about 30 miles away - it is very beautiful. We get a lot of native birds in the yard and it’s nice to sit and watch them. Oh well, must try and sleep again. PS which part of the US are you in?
I am in Utah in a city called South Jordan. It is a suburb of Salt Lake City.
I imagine it’s quite hot and dry there?
It is in the summer, but in the winter it is VERY cold! It is a pretty dry cold, but in December and January, we are usually in the 0-20 degree Fahrenheit range. My son is living in northern Utah and it is about ten to fifteen degrees colder there. We get quite a bit of snow. We had snow all through October this year. No fun for driving in! Then it warmed up for most of November, and now we are back to snow again. I like springs and summers here because I like temperatures in the 80-90 degree Fahrenheit range. August is usually our only unusually hot month where we get over a 100 degrees Fahrenheit most of the month. We have lots of mountains here. We have the Great Salt Lake close by which is a salt water lake with no outlet to the ocean. It is a remnant from Lake Bonneville which covered Utah during prehistoric times! We have Indian dwellings along the canyon walls that you can climb to in southern Utah where the four states meet together, near Mesa Verde. We have petroglyphs in middle and southern Utah. We have several inactive volcanoes near Fillmore, Utah where you can walk around and pick up red and black lava rocks and obsidian. We also have a great symphony and Symphony Hall that was built for them. We have Dinosaur National Monument and numerous national parks in our state. We have a little bit of everything here, so it is a good place to live with lots of things to do that are close by and don't cost much, if anything, to do. What is it like where you live?
It sounds lovely! I grew up in a small town called Wangaratta in the state of Victoria (Australia). It had a lot of what we call the Australian Bush (rivers, gum trees etc). Wang is situated in a large valley with quite a few mountains around with snow and skiing available in winter. In summer it used to get extremely hot and dry (over 100 degrees). Bush fires are always a problem here.
About thirty years ago we shifted up closer to Sydney just out of Wollongong. We have the Pacific Ocean only about twenty miles away and what we call the escarpment maybe ten miles. A few of the tourist blurbs call it “where the mountains meet the sea”. Compared to Victoria everything is green and lush, however we are in the grip of a drought at the moment (water rationing has just come in).
For the first time for ages our family is going on a cruise (to New Zealand). One of the ports is where the volcano erupted about a week ago causing that terrible tragedy.
(Know one knows what life has in store just around the corner.
Having a day I bed today, Lesley
Hi been diagnosed for over 2 years now. My headaches are some times unbearable. Me hospital doctor even send me for a head MRI. Nothing with that. I am just shocked to read that you also suffer from eye headache, with betchets they just give you a leaflet with the most common symptoms but theres so many more that the are not listed. Now my hospital doctor has left and I am stuck with a doctor that said on day 1 he knows nothing about betchets. That is so annoying. I just get through packets of painkillers each week. Combination of paracetamol and ibuprofen sometimes works and sometimes nothing works and I hide away in the house until it passes.
I think you’re based in the US if you’ve mentioned ER, but in the U.K. we’ve got the BASH guidelines and NICE guidelines which might be worth a read. You’ve mentioned a connection to your cycle, so google menstrual migraines, you can take a Triptan and often if you know the pattern you could take something like frovatriptan during your cycle. If you’re menopausal they recommend estrogen patches. Hope that helps. Don’t suffer, I’ve fought a long time on this front so keep down your triggers as I’ve found menstrual involvement is better when everything else is under control eg for me I had botox injections in my neck and shoulder which has helped take my headaches right down. Best wishes
Update about curing this horrible condition?
Headaches/Migraines?
Can't take no more of these headaches ;( 
Chronic headaches 
Any recommendations for Headaches during a flare?
