Hello,
For those of you who get recurrent meningitis due to BD, how do you manage it during a flare? Do you get hospitalised? What drugs do you take to get it under control? Do you know if it can be fatal, even under high dose of IV steroids?
Many thanks
Hi- I get meningitis during each of my flares. Ive had BD since 17, 31 now. Since my last big flare at 25, its been VERY little ones, with many warning signs so it doesnt progress to meningitis like it used to.... if that makes sense. But between 17 and 25- Wooooweeeee- I had it, every year, usually twice.
But 17 was a bad year- i was hospitalized- they werent sure if it was viral or bacterial. It was ruled out by a physical test (they kept pushing my knees to my head? (I was pretty out of it) and I think the duration of how long I had it- also ruled it out, as if it was bacterial- I would have been scrambled eggs at the time. they did not want to do a spinal tap bc of my age? So0o0o0o0o0o they called it viral- and called it a day. They gave me 5mg oxycontin.
I proceeded to get meningitis every year twice a year up until about 21 (hindsight my flares were correlated with winter and spring finals). I just thought that was my thing. I wasnt diagnosed at the time with BD, I just thought people get colds and flus (I didnt ever) and I just got meningitis. It lasted about a week or two. Walking was excruciating. Couldnt turn my neck. Pain throughout the body. Fatigue was an understatement. My body felt like broken cement blocks. on top of having, not exaggerating over 50 ulcers in my mouth.
how did i manage? Aleve and sleep. I used to sleep about 15 hours a day. Even after graduating college, I would still get my stiff neck, pain, and so i would go to work (cry all day LOL) and come home and promptly jump into bed.
It wasnt until 25 which was my worst flare ever(went septic) that we figured out BD and the meningitis was so bad- sheets felt like sledgehammers on every inch of skin. I could barely walk. I thought I was going to be wheel chair bound. I honestly think about birthing pain (I do not have a child yet) and i wonder which pain is truly worse- meningitis was unfathomable IMO.
By the time I saw a dr and got dx, the meningitis had passed. I mentioned it to her and asked if it was related to neuro behcets and she said "probably." Now Ive gotten a few brain scans ( i was real nervous about the lack of memory) and there are no lesions. Im really not too sure how that works, if they are there only during a flare or not... because each time I got the scan I wasnt flaring.
So anyways- how to deal with the meningitis, is sort to try and avoid it in the first place. Ive learned my warning signs better throughout the years and when they happen, I put in extra precautions to my already figured out plan.
let's get to it- meningitis is inflammation of the meninges. Every autoimmune disease is basically inflammation. We are full of it. Acute and chronic. It really does take some time to down grade the chronic levels.
here's what Ive learned:
1: drink water, only water. A lot of it. 2-3L a day.
2: Eat only meat/fish, fats and veggies. (you can work fruit back in later) Getting into a ketogenic state is incredibly anti inflammatory. While I normally eat low carb now (and some fruit now) when I flare- I cut the fruit and get back into keto. Please google keto). I personally eat a ton of anti inflammatory foods like salmon, rosemary, tumeric, ginger etc. I swear by it.
3. get all the sleep. Not play on phone in bed, or watch a movie. actual shut eye.
Ive never been on steroids. they were either never offered or offered too late. I dont want them now. I know people swear by them but they are designed to work one way that many people abuse.
They are a body bandaid. They are to help take the extra inflammation and let your body heal while YOU MAKE CHANGES to further your health. Many people take them, feel great. make ZERO changes to lifestyle, and sort of run their body ragged. This is not good. Then they get off the steroids and feel like absolute garbage. Think of it like an allergic reaction, you get stung by a bee. You puff up- so you take a steroid. Well further bee stings wont really affect you-so you keep playing in the bee garden. Get stung. Then the medicine stops- then you react really badly. Gotta get out the bee garden.
Steroids can help if you use them correctly, otherwise you may be prone to starting a very dangerous cycle. antiflammatories and pain meds also help. But again, avoiding and decreasing inflammation from the beginning is gonna do you more good than treating the outcome.
I hope these tips help- please feel free to message me further. I used to be on about 15 diff meds at one point and now i am not on any. I will take an aleve here and there- but the diet is what truly turned my life around. I wish someone had just told me sooner.
It will be okay. I promise you there is a light at the end of this tunnel. I didnt see it myself for many years but it came. It will come. Be patient with yourself. xoxox
Hi rooser1 and thanks for the detailed answer! In my case I get the migraines regularly at least 2-3 times a month. They are usually triggered by something. For instance fresh ginger instantly inflames my brain. Coffee does the same and any immunity stimulant, be it herbal or of any any sort (probiotics do a number on my brain and gastro symptoms for example). But these migraines are manageable because I know what brings them on. Plus if they start I take colchicine and they are more or less bearable. But what I’m concerned about is that in a few weeks I will have a spinal tap to look into all this brain inflammation. The issue is I had a spinal tap in the past and what followed was hell - pretty much what you describe. It was probably full on meningitis or meningo encephalitis (not sure what the difference is). All I now my brain was shut down for a week and it only started to function again after a shot of methylprednisolone. So now I’m really scared to relive this and much worse as my BD has gotten stronger. I will ask to be put o steroids and colchicine right after the tap but I’m scared the attack will be too strong despite the medication.. I already have brain lesions so I’m not sure what this will do to my brain..
Oh, and re which is worse - birthing pain or meningitis I can testify that the latter is 10 times worse that the 12 hour labour I went through when I had my daughter. So if you ever give birth, trust me, it’ll feel like a breeze!
Did you have any other brain damage? BD killed my pituitary so I have almost zero endocrine function. I have to take lots of pills and shots to replace lost natural hormones. I had surgery and biopsy on my pituitary and the surgeon said he found a lot of bad scar tissue with “nest” cells and it looked like the process took a long time. Ultimately, ischemia (stroke) did my pituitary in and damaged my hypothalamus and thalamus. Right now, I am dealing with fever almost every day and it’s impossible to get much done in this state.
Thanks,
Dave
Not that I know of, I seem to be having more absorption issues (which in turn is affecting my mental severely). First pernicious anemia last year.... which I was legit turning into scrambled eggs. At one point I forgot how to work my oven, non stop crying and confusion.... this year, this past month actually- weve figured out that I now have a b6 deficiency (extreme depression/suicide idealization, and of course all the crying).
im on a fair amount of supplements right now, sublinguals and the shots.
i do recommend this sublingual b complex- crazy difference for me in about a week. Ive had this muscle twitch in my shoulders for about a year and a half now, and i chalked it up to permanent nerve damage from the b12 deficiency. after a week on the high dose b6, it just went away (people noticed LOL). I was twitching at least a dozen times a day.
Will link if you want it, very inexpensive and absolutely can not hurt at all.
I feel for your battle, hoping you have an uneventful day soon.
Hi Dave, one of my brothers had sarcoidosis and it went to his pituitary gland, causing a lot of problems, but your sounds a lot worse. My couple of small strokes caused me to lose my balance, however I have regained a little bit of this back. I have suffered from fevers from the very start of having BD. One of my biggest problems at the moment is I have drenching sweats almost every day, so bad I have to change my clothes. I did tell the specialist and he said it didn’t sound good, I was in hospital at the time so I would’ve had tests but I have heard nothing back. All the best Lesley
Hi Lara, when I was in hospital recently a doctor asked if she could bring her class in so they could meet someone with neuroBehçet’s. I always say yes because I usually learn quite a bit myself. I described quite a bad headache I get, which is just to the right of midline on the top of the skull, and also goes to the back (occipital region). ‘Jenny’ was carrying the handbook the students use and opened it to Behçet’s disease and it described the above headaches exactly, but also interestingly, said a symptom of neurobehcet’s is ASEPTIC MENINGITIS (aseptic meaning NOT septic - not viral or bacterial). Looking back I am positive that is what I had about nine years ago when things got really bad, and it took me about two to three years to get over. Sadly just long enough for me to lose my business and have to sell my house because I was too sick to work and meet the payments. The good news is nine years later I’m still here (I’ve been told since the doctors back then saved my life) and have a fairly good income through the Disability Pension (in Australia). How did I treat the flares? Mainly lots of rest and pain killers. Unfortunately my strain of Behçet’s has been labelled ‘refractory’ and the only thing it responds to is prednisone. Thanks to Rooser I am going to try and cut right down in sugar and drink more water. Not sure if that was any help or just an opportunity for me to have a little rant 😂
Hi Lesley,
Thanks for your answer! No information on this website is useless! Yes, aseptic meningitis is a symptom of BD or neuro BD to be more precise. I read an interesting research article which distinguishes between what it calls “non structural headaches” and migraines in BD sufferers as opposed to neuro BD. Mine are of all sorts, but the ones I’m scared about are the ones that start at the back of the neck, when I cannot move my head, can’t stand the light or sounds, I can’t speak, can’t think. Complete brain shutdown. Why did it take you so long to get over that flare? Did you have any neurological damage?
How did they label your BD as refractory?
Hi Lara, I saw refractory in my notes and I know myself I only respond to prednisone. I can’t say why it took me so long except the doctors who were looking after me at that time more or less ‘let nature take its course’. I just feel that I’m very lucky to have recovered “almost” back to normal. On a recent MRI it shows up old lesions which probably were from around 2012 but nothing recent. On bad days I have a lot of trouble thinking straight and recognising thing, problems with light and noise and am incredibly sleepy. Sometimes I’m able to go to bed and basically sleep it off. Usually it takes something like 24 hours.
If you have the link to the article on headaches I would be interested in reading it.
Do you have a good doctor who understands BD? If not I would be doing a bit of research and looking for a good neurologist or rheumatologist. Even if you had to travel to see them, eventually the appointments should be 3 - 6 months apart. I wouldn’t particularly recommend this unless it was reasonably easy, but when I was originally diagnosed one of the doctors suggested I move closer to the hospital (scary stuff).
Keep letting us know how you are getting on. Feel free to PM me.
Hi Lesley,
Here’s the link to the article:
ncbi.nlm.nih.gov/pmc/articl...
I will PM you.
Thanks!
Do you ever experience the start of your severe mengitis headache in your chest and mid-back, which radiates up the spine, neck, teeth and the top of your head? When I have the bone crushing headaches, they always include the splint from mid-back up to the top. My lower back doesn’t usually become involved. Thanks! Dave
Indeed, when the meningitis attack is severe, that’s how it feels - starts mid-back, up the back of the neck and then the whole brain just shuts down. But for me it has gotten this bad only a couple of times - first when I had my first spinal tap and second when I had a few Copaxone shots (for MS). The headaches I usually get are in the head, throbbing, with vertigo and nausea to the point of throwing up. By the way, I did have my second spinal tap, but I was on azathioprine and colchicine when I had it and it went very smoothly. As opposed to Copaxone, azathioprine was great for all my neuro issues, however it worsened my gastro symptoms (pancreatitis and gallbladder inflammation in particular) so I had to stop taking it.
I have it pretty badly right now. Have freezer packs under my back, neck and head. How do we survive this?? I don’t make whatever enzyme breaks down Imuran, so I’m out of luck there anyway. My doctors are sure that I have meningitis, so I don’t want to have the spinal tap unless things get worse. I had a spinal tap a few years ago and the doctor made an error and sent me to someone else to do it again. Seriously! So maybe not again anytime soon.
Hi Dave, that sounds awful.. really sorry to hear. Does infliximab help do you think? Or is there a chance it could actually make it worse? I could not get on it because I also have MS and it does make MS worse. The same issue as with the new drugs for gastro BD. Luckily aza worked for me and would have worked even better I think had I been able to tolerate it longer. Also, when I had the flare after the 1st spinal tap my doc gave me a shot of methylprednisolone which took care of it. Could you try IV steroids?
How long do you think you’ve had meningitis? What is your doctor saying re treatment?
Hi Lara,
I think the meningitis started around 2009-ish. I had a coma in 2001, but the severe headaches started later in 2009. The first treatment drug was prednisone, then Humira, then Inflectra. Best luck has been with Inflectra but there’s a lot of room left for improvement.
Many Thanks,
Dave
My doctor says the meningitis I have from BD is damaging and could become fatal if not treated. Symptoms include awful headache and fever, which sometimes exceeds 102F, and severe body pain that feels like my bones are cracking in half. I am on Inflectra once a month. The BD might’ve been slowed by Inflectra, but it hasn’t been stopped by it. Because of the fevers, I am in bed quite a bit and have been in bed much more than I was six months ago. I am a little unsteady on my feet sometimes and I carry a cane just in case I need more stability walking. Took a hard fall early this year that cracked a couple ribs. The more intense the headache, the more my limbs hurt, as well. The majority of limb pain is from the knees and elbows down to the tips on my toes and fingers. Also have partially lost hearing in one ear. I would be so happy to be rid of headaches and body pain!
Thanks,
Dave
First Appointment NHS Behcets CoE, my tips!!
Low temperature
Migraine? Meningitis? Whatever it is i'm feeling lousy
