Menopause Matters Forum
Menopause Discussion => Personal Experiences => Topic started by: knorman on February 22, 2018, 08:27:53 AM
-
Good Morning
I recently posted about difficulties I was having with HRT in regard to a dry, burning mouth and tongue.
The HRT was working really well and after 3 weeks had complexly eliminated all my night heats (do not get flushes during the day)
for which I was extremely grateful. However, by 3 1/2 weeks, I developed a severe dry mouth, along with burning and stinging of the mouth, tongue and lips. I tried 3 different HRT options through the Dr and developed the same symptoms. Each time I stopped the HRT, the symptoms began to fade. I initially though it was an allergic reaction (I have an appointment with Dermatology in May), but now believe it is down to the dryness that the medication induced.
Once my mouth was starting to recover, I used Hydrogen Peroxide as I have done for years with no problem, as my gums were very sore. Stupidly, I did not dilute it enough and it has brought everything back and worse. I saw the dentist who Dentist has confirmed I have an extremely dry mouth and not to drink too much water as it is diluting the saliva that I do have. Panic, no water?! I stopped taking my 20mg Amitriptyline and overnight the symptoms went away. However, something straight out of the dishwasher has set it off again. My water bottle lid tasted of salt and whoosh, everything back again. I am planning on going back to the Dr.
Night heats are back and I am getting no sleep again and I lie there with this horrible mouth each night and now I am starting to struggle with panic attacks as I don't know what is going on. I am not able to use anything to assist the dry mouth as it makes things worse. I think I have upset the balance of my mouth with the HP and everything seems to react. Now I do not know which way to turn.
My question is has anyone ever had a problem like this when using HP and also, has anyone ever thought they have reacted to something chemical used in the dish washer?
My apologies for such a strange post!
-
Hi are you still taking the hrt?
-
Not at the moment. I have been waiting until all symptoms go before I start the gel and separate progesterone. Every week, I seem to do something inadvertently that starts the problem off again. After stopping the amitriptyline, I was symptom free for 2.5 days and I have never been happier, until the incident with the water bottle lid and now it is back with a vengeance. I have had no sleep for days, so aware it is making me sound like a mad women! Can't take a sleeping tablet as it dried my mouth out even more.
-
What does your GP say?
-
She doesn't know about the latest setback, last time I saw her my mouth was better after stopping the amitriptyline. My dentist said I needed to see an oral pathologist. Even a smoothie is stinging my mouth today, have become very nervous about eating anything, even though I know chewing stimulates saliva. It is the lack of sleep, I am no longer being rational and it is making everything worse. I don't seem to be able to sleep during the day, even though I have tried. I think it is because I am so panicky.
-
https://www.34-menopause-symptoms.com/burning-tongue/articles/burning-mouth-tongue.htm
Have you considered that your burning mouth might be a menopausal symptom and not a side effect of other things. If so, taking hrt could help it. It might be an idea to start the Oestrogel and see if it helps.
-
I don't think it is Dotty. I had no sign of a dry mouth whatsoever, even with the non HRT medication I took previous to taking the HRT. I know this second, even worse bout has come about since not diluting the hydrogen peroxide enough. Have managed a Dr appointment for tomorrow morning, but I know there is nothing that can be done tomorrow, maybe at least a referral to an oral pathologist as recommended by my dentist. Why oh why did I sup on that water bottle?! Everything had settled down again before again that incident! Sorry, I know I sound unhinged, but can't take another night like last night.
-
During meno I developed quite bad dry eye, dry mouth and bouts of burning mouth (like grazing on the gums and inside cheeks)
I have to be careful with toothpastes and seem reasonably settled on Colgate pro relief. I chew sugar free gum or pop a xylimelt on the side of gum to stimulate saliva production
Dry mouth/burning mouth led to gum disease on me so I really sympathise with you. It really drags the mood down when it flares
Amitriptyline aggravated my dry eye mouth and eyes but they seem to have settled better now I've got used to the tablets
-
Hello Annie0710
Thank you for your reply.
So do your symptoms come and go? I went cold turkey on the Amitriptyline (20mg per night if taken) and sleeping tablets 10 days ago, which was stressful in itself as I am having no sleep. The next morning the difference was incredible, almost back to normal and worth every second of a horrible night. Two days later, after the incident with the water bottle top, bang, back where I started and it will not go away. Have you ever experienced a horrible taste on something and it has set yours off again? All through this my taste buds have been fine, until the dry mouth went away and then the taste of cabbage, which I normally like, was disgusting, must be how a child feels when eating it! Also, I could taste the metal from my fork. So I am frantically washing every plate etc. under the tap to make sure no residue of any detergent and eating with a plastic knife and fork. I have CFS/ME and all this is exhausting! I love my food and this is dragging me down further as unable to eat anything spicy or interesting. Do you find this a problem as well? Also, does water ever sting your mouth, tongue and throat? Sorry for all the questions, but I keep thinking I am doing something to make it worse and it panics me. I have had dry eye for quite a while, but use Theoloz Duo, which works a treat.
-
Also, I had gum disease about 8 years ago, so yes, very concerned about that coming back, although dentist did ay all my gums pink and healthy. I wonder for how long? I really do sound neurotic today!
-
Thank you Teresa, Annie mentioned these earlier, so have asked other half to try Boots for me. I am hoping they are available there and not just on Amazon? I hope that everything is now OK for you. x
-
I don't know who else sells them as I got mine from Amazon
Burning mouth hasn't come back (thank god) for a couple of years but it'd give me s metallic taste between the back teeth. I remember one dental visit I had a sore throat, much like the start of tonsillitis and she said it's the burning mouth, it'd travelled to the back of the throat. She referred me to a facial maxillo specialist, is that right? He took photos etc but said it's not BMS as in continuous but spates of it mimicking it which I was relieved about as there's no cure, just antidepressants.
I take 10mg of amitriptyline each tea time, I have to, otherwise my back stops me even doing housework. My only other option is injections in the spine and the thought petrifies me
My gums have really suffered and are a constant concern
My god I was completely bloody normal prior to menopause
-
Have you ever felt panicky with it? I am trying hard to stave off a full blown panic attack as I am so anxious and I don't know whether to drink water, not drink water, as my dentist says it dilutes the 'slimy' saliva, which he says is missing, but cannot go without water! I felt perfectly happy when this disappeared for a few days, so I know it is this situation rather than anything else causing me to panic and of course, anxiety makes dry mouth worse. I can't even talk now as it roughs up my tongue and palate. I need a damn good sleep, but know as soon as my head goes down, whoosh, the heats start. Like you, I took the amitriptyline for my back and it also helped me to sleep. I am going to ask to be referred to facial maxillo specialist when I see Dr tomorrow. My mum has had the injections in the back and its worked really well for her, but I'm not sure it would be for me either. Thank you for replying, it is helping me to stay calm. Going for walk now with OH to try and relax, but don't want to get thirsty. I know, I am overthinking this! I do feel like a complete mad women, so I know what you mean about being normal prior!
-
Yes, my first nasty meno symptom was the dry burning mouth and it gave me anxiety. I was constantly worried my teeth would fall out and I feel haggard and old and ill. That all started 2012.
Have you tried antihistamines? I'm only thinking because it may be an allergy to something ? X
-
This is a horrible one to kick off with as a first symptom Annie0710, has it been going on and off all these years, or has it stopped for you completely? I do hope it has. I am panicking more the last couple of days because my nose is starting to block up, so know that I might have to breathe through my mouth, petrified of having a cold. My mouth feels so grubby and I know I have dragon breath! I think I will have to brave a clean by the dentist, I couldn't face it last week as my mouth was so roughed up, normally the dentist doesn't bother me.
Strange you mention the antihistamine, I thought my reaction to the HRT initially was an allergic one. I had almost got rid of the burning mouth and tongue, decided to try antihistamine and within about 20 minutes, everything was back as bad as it had been on the HRT. It seem like I can't win at the moment. I am now convinced my initial reaction to the HRT with the burning and tingling was down to the extreme dry mouth it produced. Now on top of that, everything in my is roughed up and sore and stinging. It has been one little accident after another. If I hadn't used the hydrogen peroxide at an incorrect dosage(fear of the gum disease!), I don't think I would be in this pickle now, think I have really upset the balance of my mouth. We need a magic wand to make us feel better x
-
You definitely need to see a specialist. My appt was pretty quick on the nhs although I was clear of it at the time of appt
Touch wood I've been clear since about 2014. It was between 2012-2014 I suffered and strangely the only food that didn't hurt was chocolate buttons yet chocolate can really hurt ulcers when I get them
Really hoping you get some relief from this xx
-
Much better night last night, even though nose blocking up, more relaxed and not panicking. The posts really helped, thank you. Tongue and roof still very sore and rough this morning, but feeling more positive. And the sun is shining. Xylimelts should arrive today. Hoping they do not sting as have to be very careful what I use to alleviate the dryness. Dr today, so will asked to be referred. I am very pleased to hear that your dry mouth cleared up, one because I am happy for you as I know how bloody awful it is and two, it gives me some hope. I have been hankering after chocolate! Enjoy the lovely day, Spring is not too far away. x
-
Xylimelts arrived today bang on time, excellent service. Boots had never heard of them. However, I have had an incident with bread and butter this afternoon, it started stinging my mouth and throat after I had eaten it. Water stinging my mouth, gums and throat again, but badly (this had stopped), as is my salvia spray. Have you ever experienced water causing your mouth any discomfort? This is when I really become nervous, how can I not drink? Again, I am sorry to sound neurotic, I have tried not thinking it through, but trying to avoid it happening again and find solutions.
Dr has referred me to facial maxilla and said the appointment should come through quickly and quite locally. As the incident previous to the bread and butter was set off by something out of the dishwasher, she thinks this may be a problem as well, which I had picked up on, and stupidly, I used a knife direct out of the drawer for the bread and didn't rinse it off. I'd been avoiding bread up til now, I shall go back to that. I did try some chocolate today though, what a treat. I am buying some Ecover washing up liquid tomorrow!
Teresa, I am sure you will probably have been all this with your Dr and oncologist already, but please excuse me asking, are you on HRT, or able to take HRT? By day 3 or 4 of starting HRT, the first thing I noticed improving, which was not expected, were joints easing up and becoming less painful. It must be very hard to keep going some days, but it sounds as if you are doing really well and fighting back. x
-
I did wonder if that is the case. I'm beginning to realise just how much our bodies need lubrication. Thank you very much again for the Xylimelts recommendation, which I used last night for the first time. It does seem to make a difference and I managed to drop off for a little while and although mouth sore this morning, it did feel better. Have one in now as we speak! I hope you have a chance to enjoy the beautiful weather today. Attempting to go out into the garden, even though not up to doing much, it does help to lift the spirits. Take care Teresa x
-
Bless you, you seem to have a really aggressive case of this. I suffer allergies and although not the same as BMS it's so frustrating when something simple triggers them off. At the allergy clinic they saw I reacted to water ! It answered why during and after a bath I want rip my thighs and shins to shreds. This has now caused problems with my hrt gels feeling sore on my legs when I apply them. I'm fine showering it's when I immerse in water. My list of allergens just gets longer and longer
I wish you so much success with your appt xx
-
That is weird, water is one of the things that makes my mouth sting! That's when I become really anxious, how can we be allergic to water?! Drinking bottled water in case it is anything in the tap water, but bottled water sets it off as well. It sounds really painful when you bathe, is it something in the water? Thank goodness it doesn't set it off when you shower as well, is the gel ok then? Are the allergies coming about because of the menopause and age? I have never, ever had an allergic reaction to anything previously, so it might be age or menopause, I just don't know. Going to Dermatology on 8th May, which feels a long way off. I am gutted that I am unable to take my HRT (that's where my problems started) as it completely solved the night heats and I had started to feel a little better, but 3.5 weeks in and the dry, burning mouth started. I have the gel and separate progesterone sitting upstairs waiting for me for when things improve (!) but so tempted to slap that gel on now. Dr advised yesterday we wait until all my appointments are over and go from there. I had 3 weeks of bliss on HRT after resisting it for 3 years. Sigh.... xx
-
I posted this on another thread but I'm putting it here too just in case you miss it http://www.ouh.nhs.uk/patient-guide/leaflets/files%5C110407burningmouth.pdf
Taz x
-
Thank you Taz x
-
Hope you find something useful there.
Taz x
-
I had my first anaphylactic at age 21, and it snowballed until I learned what I can and can't touch/eat but peri brought it all on much more, most days I was having silly allergic reactions that were controlled by antihistamines, this was when my dentist advised to try Colgate pro relief, my gums were literally tearing and so so painful
Now I'm post meno the allergies daily have settled loads but still have my life threatening triggers
I love the gels, they give me total control over doses. I worked out my best dose is 2.5 pumps each morning but my thighs are so bruised from scratching because of the baths ! X
-
My God, that must have been hard. I'm, struggling with knowing what to eat, drink at the moment, so it is difficult to imagine the same scenario in those circumstances. I'm post meno now (56), but my symptoms seem to have racked up, brought on by the HRT, brilliant! I think we need to buy you some mittens! xx
-
I've got used to it now x
-
Annie, are you around today???
-
HI ya I'm on my lunch break til 2pm. Everything ok ? Xx
-
Sorry Annie, have only just picked this up. Would it be ok if I PM you? Really starting to panic again and have a couple of questions, I hope you don't mind. x
-
No of course not, go ahead and pm. I'll be home from work 6ish cx
-
Thanks Annie. I do miss going to work!
-
Aw knit man I LOVE my days off and would retire in a heartbeat if I could x