Anyone had burning mouth/tongue syndrome

[[Ka...]]

Hello fellow buddies

I’m almost off diazepam. Been a struggle & I’m doing this alone and by sheer self will. 

I’ve had weird mouth issues for 2 months since slow reduction & it’s been diagnosed by GP as burning mouth/tongue syndrome. Seems a possible side effect/withdrawal symptom. I’m interested to know if others on/off benzos have experienced this please? 
 

Edited January 3 by [Ka...]

[[Ka...]]

I had no replies to original post. That’s OK!  A google search revealed burning syndrome is a thing & can be associated with benzos. 

Going to extend question to more general sensory mouth issue. I continue to have this burning syndrome - but now have a new numb lip sensation. 
I wonder if anyone had/has this please? 
thanks
 

[[WU...]]

yes to burning mouth and mine is also the roof of the mouth, with pressure and pain as though being forced up into my head ( along with all the other head sensations but only on the right side). I am also alone, knowing that if I mentioned this to a GP they would just say it is anxiety. Well it is anxiety, who wouldn't be anxious with these kinds of symptoms ?! 

[[or...]]

@[Ka...] I had those s/x. My doc prescribed a drug called Cevimeline which keeps your mouth moist, thus cutting down those feelings. Hope this helps.

Edited January 8 by [or...]

[[Ka...]]

10 minutes ago, [[W...] said:

yes to burning mouth and mine is also the roof of the mouth, with pressure and pain as though being forced up into my head ( along with all the other head sensations but only on the right side). I am also alone, knowing that if I mentioned this to a GP they would just say it is anxiety. Well it is anxiety, who wouldn't be anxious with these kinds of symptoms ?! 

Thank you @[WU...] I am sorry you have this. 
It is a horrible side effect or withdrawal symptom. I did ask the GP after wondering what this is, sent photos (!) & was given diagnosis. Also, advised could run blood test to check for B12 deficiency etc - google says this too. But he said “you’re anxious” - well of course I am! We all are.

I’ve got lamberts multivitamin rather than have blood test (fear) to see if that alleviates pain. 
Interestingly, often remedy is to prescribe benzo. Ridiculous idea 
 

 

 

[[WU...]]

Hi @[Ka...] it seems to be the standard response by GP's "anxiety" ! Ha

I was prescribed benzos for muscle contraction and pain in my neck, cheek, ear, all on the right side, well I have that now in spades! I won't take any more drugs to counteract the effects of another drug, makes no sense to me. As for multivitamins, not sure, but I'm now trying an ice pack as mentioned by others, early days, only 10 months after CT. I guess eventually my brain will get the message...... 

[[Ka...]]

8 minutes ago, [[W...] said:

Hi @[Ka...] it seems to be the standard response by GP's "anxiety" ! Ha

I was prescribed benzos for muscle contraction and pain in my neck, cheek, ear, all on the right side, well I have that now in spades! I won't take any more drugs to counteract the effects of another drug, makes no sense to me. As for multivitamins, not sure, but I'm now trying an ice pack as mentioned by others, early days, only 10 months after CT. I guess eventually my brain will get the message...... 

@[WU...] I really hope it subsides for you.
I started on multivitamin in case it may be caused by some deficiency - logically it would go it that should be reason. But I suspect not. I’ve never had this or anything similar in 5+yrs of benzo use.
Good to compare experiences! 😬

[[WU...]]

Hi @[Ka...] I was just about to post that we get enough B12 from our food provided we eat meat, fish, dairy, eggs etc. and then I checked your history and saw you are vegetarian !  I was vegetarian for over 20 years from age 19 to 40 ish and all of a sudden I ate a steak one New Year's Eve and no more vegetarian for me !    I can see why you are considering vitamin supplements, fair enough, be discerning, go for the best you can find, not the cheap ones from supermarkets! 

Yes it is good to compare experiences, though we are all different, it does help to know what others are going through.

[[ns...]]

On 03/01/2024 at 10:14, [[K...] said:

Hello fellow buddies

I’m almost off diazepam. Been a struggle & I’m doing this alone and by sheer self will. 

I’ve had weird mouth issues for 2 months since slow reduction & it’s been diagnosed by GP as burning mouth/tongue syndrome. Seems a possible side effect/withdrawal symptom. I’m interested to know if others on/off benzos have experienced this please? 
 

Ho Katrina, yes burning mouth or a metal taste appears to be typical in withdrawl. I asked this question about a salty strange taste, peppery kind of taste, the answer was yes, it's typical. Still have it off and on but it seems to get better certain times of the day.

Be well my friend

[[ns...]]

14 hours ago, [[D...] said:

Hi @[ns...] thank you for your reply, i need to look in depts in regards of the advance, yes, i am exausted..  15 years to break free from psychiatric drugs, im each time feeling better mentally, drained of energy and still and not fully there, but better and now cancer. I will keep updating, afraid as im dealing with pains and each time having more relief from the severe pain i developed, reason why im scared of some of this treatments

Thanks you for taking the time 

 

5 hours ago, [[K...] said:

@[ns...] I did a straight switch. I knew nothing of Ashton guidance and no one referred to it or the gradual way to convert across/ switch which I am sure is better.
I believe 1mg lorazepam is equivalent to 10mg diazepam/valium but best double check Ashton table. I don’t want to misguide you. 

The Psychiatrist advised to go to diazepam/valium 5mg x 3 times per day and the aim was to eventually come off. Due to my previous experience with this benzo my doctor considered this would be too high/sedating & instead gave me 2mg x 3 times per day.  
Initially, I think it suited me. I did feel somewhat improved but it was not sustained. I think paradoxical effects kicked in. 
Fast forward to the present,  I took diazepam/valium from summer 2019 per my history/bio & reduced in 2021 then got stuck/held. I don’t think any benzo is of benefit for me. I had conflicting advice. Ultimately, my inner personal feeling is to try without so I have further reduced and stopped diazepam/valium a few days ago. Some withdrawal symptoms noticeable.

I hope this is useful. We are all different & react in a unique way & the allergies/diet/sensitivities you raised are so relevant. I am quite new here so I am glad to exchange stories and keen to see how others deal with the complexity of these benzos. 

I wish you & others going thru this ordeal well. 
 

 

 

3 hours ago, [[b...] said:

It is, gooogle it.

 

9 hours ago, [[v...] said:

A buddy already answered this.  It's not perfect.  Some pieces will be smaller.  That's why I cut 2 pills so I can use the smaller ones when I feel I don't need them and use the larger ones when I do need them.

 

On 03/01/2024 at 10:14, [[K...] said:

Hello fellow buddies

I’m almost off diazepam. Been a struggle & I’m doing this alone and by sheer self will. 

I’ve had weird mouth issues for 2 months since slow reduction & it’s been diagnosed by GP as burning mouth/tongue syndrome. Seems a possible side effect/withdrawal symptom. I’m interested to know if others on/off benzos have experienced this please? 
 

Katrina, are the withdrawals pretty bad? I knew you Said you were going to do this, wow, what symptoms are you having, I'm thinking constantly about jumping off lorazapam.  Please let me know how your doing with sure will Power ok, 

Keeping you.in my thoughts 

[[ns...]]

4 hours ago, [[K...] said:

I had no replies to original post. That’s OK!  A google search revealed burning syndrome is a thing & can be associated with benzos. 

Going to extend question to more general sensory mouth issue. I continue to have this burning syndrome - but now have a new numb lip sensation. 
I wonder if anyone had/has this please? 
thanks
 

Yep, I'm numb all over. Have numb lips, tongue sometimes, my right leg has been numb for 3 yrs, now it's in my butt! Lol, but it's becoming hard to walk. When I go into the hard withdrawals the numbness spreads if I go into to much panic. Try to ignore it, breath, don't stretch too much if it gets inbyour body.

All the best Katrina, gosh you are brave! 

Be safe

[[ns...]]

4 hours ago, [[W...] said:

yes to burning mouth and mine is also the roof of the mouth, with pressure and pain as though being forced up into my head ( along with all the other head sensations but only on the right side). I am also alone, knowing that if I mentioned this to a GP they would just say it is anxiety. Well it is anxiety, who wouldn't be anxious with these kinds of symptoms ?! 

Exactly, we definitely have extreme anxiety with withdrawl, on this site there is a list of symptoms. I was directed to them, it helped to see the list but also disheartening.  As I have almost all of them.

I'm so sorry you are alone, but maybe you're stronger for this,  you're used to being alone and will.probably do better than most. If u feel you need help, please contact a friend or family.nember to help u  it can get pretty lonely during withdrawal. Also, Stat connected here, it helps alot!

[[ns...]]

3 hours ago, [[K...] said:

Thank you @[WU...] I am sorry you have this. 
It is a horrible side effect or withdrawal symptom. I did ask the GP after wondering what this is, sent photos (!) & was given diagnosis. Also, advised could run blood test to check for B12 deficiency etc - google says this too. But he said “you’re anxious” - well of course I am! We all are.

I’ve got lamberts multivitamin rather than have blood test (fear) to see if that alleviates pain. 
Interestingly, often remedy is to prescribe benzo. Ridiculous idea 
 

You it's interesting your doctor mentioned b12, I've searching this because I have this symptom but everything i eat is full of b12 and other b vit. Thought I was getting too much b12, lol, well just goes to show u, withdrawl symptoms are strange, do some odd things with chemical changes to our brains. It will.pass though,byhdy always change.

[[ns...]]

1 hour ago, [[W...] said:

Hi @[Ka...] I was just about to post that we get enough B12 from our food provided we eat meat, fish, dairy, eggs etc. and then I checked your history and saw you are vegetarian !  I was vegetarian for over 20 years from age 19 to 40 ish and all of a sudden I ate a steak one New Year's Eve and no more vegetarian for me !    I can see why you are considering vitamin supplements, fair enough, be discerning, go for the best you can find, not the cheap ones from supermarkets! 

Yes it is good to compare experiences, though we are all different, it does help to know what others are going through.

B12 is in everything it seems. I eat nut butters, eggs, wheat bread, avacado, broccoli. Baked potatoes, all these have b12, so I know I'm not deficient in b12, thought I had too much, withdrawl symptoms are strange.

[[Ka...]]

thank you @[ns...] for all replies. 
these side effects are weird! 
 

[[An...]]

On 03/01/2024 at 13:14, [[K...] said:

Hello fellow buddies

I’m almost off diazepam. Been a struggle & I’m doing this alone and by sheer self will. 

I’ve had weird mouth issues for 2 months since slow reduction & it’s been diagnosed by GP as burning mouth/tongue syndrome. Seems a possible side effect/withdrawal symptom. I’m interested to know if others on/off benzos have experienced this please? 
 

You said you are close to being off. Congrats! How close are you? I never experienced the burning in my mouth from benzos but did experience it in other areas on/in my body.

[[ns...]]

5 minutes ago, [[K...] said:

thank you @[ns...] for all replies. 
these side effects are weird! 
 

Yes there sure are, I just took my little dose, been having total withdrawal symptoms for about 30.minutes before which is odd for me, then I took the little nasty piece and it's bad! Man I hate these things, can't wait to be done, get tested and move on! 

Hope u get some rest today, be well

Edited January 8 by [ns...]
Add

[[Ka...]]

@[An...] just a few days. Thank you for your message - it’s good to get  this great feedback. 

[[De...]]

@[WU...] i truly understand your view on this, but i wish i had started with stuff earlier, even prior, but im a long term víctim of several trials of recovering, for me, this is a poor move, If you're undergoing nerve damage, encephalitis, auto-imune reactions, it's wise to adress it imo, not with the usual aproach of more psychiatric drugs, with drugs that are aimed to nerve protection, nerve regeneration and autoimune syndromes

 

Examples, rolfumilast(pde4 inhibitor) theobromine (not a drug) meloxicam (brain/spine) its an NSAID,  or pentoxifiline (might bê stimulating) or theofyline, pioglitazone, and others out there, MS drugs like fingolimod, nimodipine, suffering constat auto-imune inflammation and damage which is non stop because of the issue caused by benzodiazepines and others is not good and wont serve anyone well imo 

 

There is an issue of not being able to take anything, i had that with some supplements, but not with meloxicam and pioglitazone and the others that i tried along the time 

Edited January 8 by [De...]

[[...]]

On 03/01/2024 at 12:14, [[K...] said:

Hello fellow buddies

I’m almost off diazepam. Been a struggle & I’m doing this alone and by sheer self will. 

I’ve had weird mouth issues for 2 months since slow reduction & it’s been diagnosed by GP as burning mouth/tongue syndrome. Seems a possible side effect/withdrawal symptom. I’m interested to know if others on/off benzos have experienced this please? 
 

Yes got it week 1 when I ctd still have 17 months later also roof of mouth.

[[bc...]]

5 hours ago, [[K...] said:

@[An...] just a few days. Thank you for your message - it’s good to get  this great feedback. 

There is a test where you can cheak the state of your neurotransmitters and have a deeper look into it. Have you considered this ?

https://nutripath.com.au/product/neurotransmitters/

[[ns...]]

Wow that is awesome! How much is the test? Where are they located? Do they do the testbin the US? 

Never heard of this before, have to ck into this. Thank u for sharing!

[[ns...]]

5 hours ago, [[n...] said:

B12 is in everything it seems. I eat nut butters, eggs, wheat bread, avacado, broccoli. Baked potatoes, all these have b12, so I know I'm not deficient in b12, thought I had too much, withdrawl symptoms are strange.

It's gerd! That's why the frothy sticky saliva, yuck! Just took a ppi, didn't want to but had no choice, I don't do well with meds and now I'm having to take it with my dose, if u have gerd, please let me know how you deal with it

Thanks

[[Pa...]]

On 03/01/2024 at 13:14, [[K...] said:

Hello fellow buddies

I’m almost off diazepam. Been a struggle & I’m doing this alone and by sheer self will. 

I’ve had weird mouth issues for 2 months since slow reduction & it’s been diagnosed by GP as burning mouth/tongue syndrome. Seems a possible side effect/withdrawal symptom. I’m interested to know if others on/off benzos have experienced this please? 
 

Hi, Katrina.

I just developed this in the past few days. I am poly drugged and I’m not sure which medication it’s from. I’ve been slowly tapering K and never had this issue until I had to change brands with pregabalin. It’s been accompanied by burning in my stomach as well.

[[Ka...]]

Welcome @[Pa...] you will find this a supportive community. 

Sorry about the burning you have. It seems to a common withdrawal symptom & others here have noticed it too. I didn’t have it until tapering diazepam at low dose. 
When poly drugged agree it’s hard to know what is responsible but suspect culprit is benzo & brand change may unfortunately add to the mix. As you taper go slow & steady & in time it may become less of a problem. But always consult your doctor if worried. 
wishing you well. 

 

Ps do start a new topic if you wish to ask anything specific to taper plan or anything else at all 

Edited February 25 by [Ka...]