I still haven't got an official diagnosis but 2 specialist suspect it. I was prescribed hydrocodone for the mouth pain so I make sure I am eating enough but I feel like it makes my brain worse (and my mood). I have taken hydrocodone in the past for minor injuroes or migraines and it was always awesome and made the pain go away but now i feel "weird" when i take it and more irritable. I am just curious if it is effecting the neuro symptoms or if anyone else has had an odd sensation with taking pain medication. I hate being in pain but I had feeling so out of it and kinda on the fence on if i should keep taking it. I tend to be an all or nothing person so I am not good at just taking them as needed because my mouth is always in pain....worse some times but always in pain so I just wonder if maybe i should stop taking it and finding other ways to cope with the pain. Any ideas or insight? Thanks
Does pain medication make neuro symptoms worse? - Behçet's UK
Does pain medication make neuro symptoms worse?
Hello,
I worry that the hydrocodone is just covering up your mouth pain without getting rid of the ulcers in the first place. A prednisone taper will get your ulcers under short-term control, and if you get the ulcers frequently, I would recommend Plaquenil. I had severe mouth ulcerations, and the Plaquenil stopped them in their tracks. It takes about a month for the Plaquenil to work, but you will start to notice mild positive changes in about ten days. Ask your doctor what he/she thinks about a Prednisone taper along with a prescription for Plaquenil 200mg 2x/day for long-term treatment of your oral ulcers. With these meds, you may not need narcotic pain medicine at all. 
I am still working on getting an official diagnoses. I have 2 specialist (neuro and gum) who both suspect Behcets but say I need an official diagnoses before they can treat for anything. My appointment with Rheum is on Thursday so I am crossing my fingers I will get a diagnoses and start moving towords solutions instead of just coping with the symptoms. My gum specialist had mentioned that there was specific stuff she could use to treat my mouth that would help alot, if I did in fact have Behcets....so if I can get the diagnoses then it should be realtively fast that i can get some relief!! Thank you so much for sharing...I am keeping lots of notes and documentation so I will mention this medication when I have the chance. Thank you!!
I don’t understand why they gave you Vicodin off the bat- because they’re waiting on an “official” diagnosis? Behcets has no test, you just start treating the symptoms and ultimately the whole body as one (diet, stress modulators and sleep).
Are you in USA or Europe- sounds USA
They have magic mouthwash. It’s a combo of lidocaine and sodium bicarbonate and something else, lots of people with ulcers like it. Colchicine is first line of medication. Helps reduce ulcers in size and duration. I would recommend on starting at half dose bc it’s hard on the stomach.
Back to the weird Vicodin effects, you said you’re not taking it as needed, but rather all the time? How much do you weigh, what’s the strength and mg? It sounds like you’re getting high (not intentionally). I used to take Vicodin myself for random surgeries and yada yada, and I was fine for the most part (I also have suspected neuro) until in the height of a flare- they biopsied a vagina ulcer and have me Vicodin. Nbd. Been on it before. I had the worse reactions off of One pill. My head was spinning, I couldn’t stop vomiting and I could not hold water down. Pain was excruciating. I cried and held myself into a ball and prayed for relief. Lasted a few hours.
Tldr: start treatment. Eat well and sleep well. Drink only water and a lot of it. Sounds like it’s too much Vicodin, split the pills or find diff med.
I have taken vicoden before and I am not taking enough to make me high...I am actually taking less than I have in the past for other injuries...it just makes me feel different and. I am not taking it all the time, like taking more than recommended...what I meant was that my pain is in constant pain so just taking them when im in pain, means i am taking 1-2 everyday to help the chances of me eating....but once i have a break from the pain, i like the break....so part of me thinking if i just never take any pain medication and just get use.to the pain it would be better....but none of this probably matters...my question was if anyone else with neuro behcets had had a similar off feeling.
I am hoping to get a diagnoses on Thursday and have a doctor actually start treating the diease instead of the symptoms. My dentist prescribed me a 1 time script to help me get through until I got in with the rheum. I was wondering if my reaction to the vicidon was related to behcets so i could share the symptoms with my doctor.
I appreciate you taking the time to reply but I feel I worded my question poorly. I changed my diet 3 weeks ago and cut out gluten, dairy, and fruit...i havent worked in 2 months and been in almost constant pain for 3 months while doctors continued to dismess me time and time again. So the dentist writing me a small script to help me atleast get a break from the pain was much appreciated. However, i dont think the diet changed have had enough time to have a huge result and i had massice flare ups for 2 of those weeks so i mostly drink paleo protein drinks on the bad days...so its hard to get the proper nutrion in.
Again I appreciate your reply.
I think it’s hard to explain brain feelings, hence why I tried to describe it as high. I’ve been high intentionally and not intentionally off Vicodin, and it’s a weird sensation and varies between the two. Aka being sick and accidentally taking too much it’s not the same. You have to remember that you’re in a really stressful time so minor things can be amplified. Either way, mention it to your doctor. Always write it down with dates too. Whether it’s a side effect or possibly related to neuro- everything is worth mentioning. I can say with neuro things, I had meningitis over 10 times from 18-25 years old. I have shit for memory and mince words a lot. When I’m a flare, I’m really out of it, and I drop things. It really is like a fog. I had an mri a few years back to check for lesions and I was clear. Inflammation really is a funny thing.
I am excited for your appt Thursday. I like your outlook of treating the disease and not just symptoms. It’s very easy to get caught up in the symptoms. I too do a low carb, keto ish. Type of diet and honestly it helped the most. When I had thrush and nothing was helping it (months of fluconazole, clotrimazole etc) I did the candida diet which is carb free. I felt a diff in ten days. Energy went up, mental clarity started, ulcers go away faster now if not happen at all, and joints are good.
Def keep us posted please! Xoxo
I appreciate your response and explaination of your symptoms. Lucky for me my husband was diagnosed with an autoimmune disease about 6 years ago, so since then i have educated myself on massive amount of alternative ways to help. He has choosen to continue to treat the symptoms so he has continued to get worse. About 3 years ago (long before my problems started....i only had fatigue and ibs at that time but i had 2 young kids and running a home daycare so i didnt think much about it) we did the paleo 30 day challange. I did it to support him and i notice an improvement of my energy and mood. He saw massive improvements in his pain and inflammation, it was really crazy, how 30 days of a diet change could do more than 3 years of medication...however he has a very demanding job that is outdoors a lot and the diet was to hard for him to wait to commit at that time and honestly it was a lot of work for me when i didnt feel that bad to begin with so after about 40 days we stopped. The day after the nurologist said she suspected Behcet's I went 100% paleo. I plan to go a step further and do the Autoimmune protocol but I am letting my body adjust to the paleo before i attempt it. I would like to do a full 60 days of the elemination diet. I have seen first hand that while modern medicine can make my quality of life more comfortable...it can not provide the long term improvment of mind and body that I want. Since my health issues my husband has decided he wants to do paleo with me (what we wont do for ourselves, we will do for the ones we love) so these is a blessing in all of this. I hope in healing my disease, he can also start healing his. God bless you!
Hi,
I have two thoughts on your question.
FIRST, could be a Codeine sensitivity, that possibly leads to full blown allergy in the future.
SECOND : have you tried Lidocaine 2% gel? It can be used for both oral and VAGINAL ulcers.
IT is like very strong teething gel. It works for about 20 -30 minutes, long enough to help you eat and urinate.
I am not a doctor, I have no medical training.
I have Neuro behcet's, I am a patient just like you.
But, I am very good at research.
I DO NOT RECOMMEND TOBACCO USE FOR ANY ONE. NICOTINE IS ADDICTIVE AND MAY CAUSE HEALTH PROBLEMS.
There is a third thing that you should discuss with your doctor...
NICOTINE PATCHES.
Yes! NICOTINE. There ARE scientific studies showing a distinct connection between smoking and other tobacco products on both oral and VAGINAL ulcers. It stops them in most people. (it sounds wonky, but the Drs. Yazici, 3 of them, a father in Turkey with 2 sons in NEW YORK USA.
They are studying this unusual "treatment".
YOU can google, Behcet's, nicotine.
There are multiple studies by scientists and case studies on line. Print out a couple, and show your doctors.
A discussion with your doctor is important about using the lowest dosage nicotine patch to control your ulcers. And addiction, cancer, etc.
IT might be a trade off to starving to death! (Which also causes health problems and death.)
A few former smokers, actually had to go back to smoking, as the patches did not stop their ulcers.
I hope this info is a help.
I found all the different mouth washes didn't help me.
Another option is oral prednisone
IT has many more bad effects on your body!
I hope this info is useful.
Cindy
California, USA
Mouth ulcers
New and in the diagnosis process
Seven year old had glandular fever a year ago got better now been ill for 11 months, with mouth ulcers, joint pain, could it be.....
Symptoms and misdiagnosis
Recently diagnosed 
