Burning mouth syndrome

[Ariel]

@Shashal

Just to be clear, what I posted above isn't meant as tips or advice, it's just what works for me at the moment (at other times I've had to make other choices; and who knows how it will be in the future). Diet is so individual, I think everyone's gotta experiment for themselves to figure out what suits their body at any given time. But if you find the info useful that's great, I'm happy to share.

 

I hope you feel better soon, Shashal. 

Kind wishes, 

A.

[peaceandlove]

On 12/7/2015 at 2:06 PM, Vonnegutjunky said:

Reviving this old thread as burning mouth is one of the most consistent symptoms that I have -

 

My waves begin with severe tinnitus, burning mouth and double vision, and I become physically incapacitated, depression and mild innerestlessness, I just sleep and sleep, I cannot function for days; I saw on a benzo buddies board that there is some theory that these are signs of cns damage; anyone else have this?

did the burning mouth get better for you?? And what about the chronic fatigue? I currently have both of these

[Vonnegutjunky]

6 hours ago, peaceandlove said:

did the burning mouth get better for you?? And what about the chronic fatigue? I currently have both of these

They absolutely did - the CFS still comes and goes but have not had the biting mouth for years now - as i tapered it got better 

[peaceandlove]

1 hour ago, Vonnegutjunky said:

They absolutely did - the CFS still comes and goes but have not had the biting mouth for years now - as i tapered it got better 

Great to hear, I’m so happy for you 🙂 continue to heal

[6Eggs]

Hi all,

 

I know this is an old thread, but I recently developed BMS this after coming off Rexulti (Brexpiprazole) a newish and unusual antipsychotic that is a partial agonist of dopamine rather than the blocking of dopamine that all other APs do apart from Abilify which is the same company and predecessor to Rexulti. It's action not fully know which makes it hard to know why the WD symptoms are so rare and unusual.  Being a partial agonist it supposedly stimulates when there is lack of dopamine but at a less than 50% response compared to dopamine, and when there is too much dopamine it competes and blocks response and induces it's own at less than 50%.  So it considered a "modulator" by locking the dopamine receptor response at a medium level (claimed 45%). No one knows what implications this has regarding long term use and adaptation, obviously bad ones given my severe very unusual set of neuopathic/neurological/autonomic dysfunction post WD.

I had a failed attempt to quit it 2 years ago almost. This time I re-tapered over 18+ months down to 130th of the original middle dose (0.015ish mg) but the WD were 80% as bad as the rapid discontinuation I did the first time going by the phych's advise once I actually stopped this 2nd time. The taper itself got better and better with time where the last 2-3 reductions in dose produced no noticeable WD at all, so the rapid onset and severe WD upon quitting the last minuscule dose was surprising the least to say.

Anyway, the first time I had lots of burning/raw electrical pain else where, mainly in my private area and feet and total numbness in most places in my body, worst waist down and some in my lower face and mouth and hands, but I don't recall any burning in my face or mouth but I did have weird paralyzed feeling and numbness and great difficulty swallowing.


Fast forward to this attempt to quit I didn't get numbness or other symptoms mentioned above this time (a few of them but extremely short duration) but the pain was pretty much as bad, but the one thing is the new BMS I hadn't had before. I've often had this same feeling in my lower and rarely upper legs though.

From my research, BMS seems to be a sub variant of RLS, both speculated to be issues with dopamine signaling.  I have RLS, even before taking pych drugs but mine is mild and comes and goes and always had.

Studies found that administering a dopamine agonist, such as those used for Parkinsons often remits the condition completely while taking the drug, the issue is dopamine altering drugs, especially agonists are harmful anything more than short term and withdrawals from them are devastating and can be permanent for unknown reasons.

Also, BMS has been reported to be caused by antidepressants itself, which I am still on and tapering off, a RIMA called Moclobemide, which rarely can included burning sensations, pins and needles numbness as a side effect, also common for MAOIs which Moclobemide is basically a derivative of this drug class. I'm hoping that's all it is but I am worried it's my dopamine system is out of whack after being on Rexulti since many of my WD symptoms minics DAWS, (dopamine agonist withdrawal syndrome), a lot of which involves body wide pain and altered sensation.

The only time I have relief is when I'm half asleep, symptoms clear completely but immediately come back as soon as I start to become more aware during wake up.

It does occasionally remit randomly throughout the day and some days it's not really there but I can tell it's waiting to emerge.  Sometimes it' swaps places with my private area, so when the mouth hurts the private area is pain free and then it can flip the other way.  When everything is really bad I often get bad RLS, which can start to creep into my arms too. The later is rare though and only happens when there has been a cumulative or large drug dose change, obviously finally quitting Rexulti counts as one. I quit 6.5 weeks ago.

It started as a strong altered metallic taste within a few days of quitting Rexulti, I still get than metallic but more as a feeling than taste now, like that metallic feeling you get in your tongue when you get a fight or flight response.