Morning All
Another sunny day, trying for a day visiting open gardens in a village near us. Love nosing rounds peoples gardens and helps ward off the old anxiety!
Pamabz, a quick (!) run down of what happened. Started HRT last November. Bliss. 3.5 weeks in started getting a burning tongue and lips, with a lot of tingling, mouth also felt very dry (which is when I turned to this forum, thank you all). Stopped the HRT, symptoms started to go and then about every six days, I would 'do' something that would set it off again, things that hadn't been a problem before the HRT, such as taking my Vit C powder. The anxiety then kicked in and my mouth became drier and drier and then the roof of my mouth started to sting badly. HRT well out of my system by now (evening and night heats returned with a vengeance). Saw my dentist who said mouth extremely dry. Decided to stop taking Amitriptyline 20mg (and the odd sleeping tablet) and two days later I could feel the saliva glands under my tongue producing saliva. One very happy girl. Two days later, something started it all off again and I went downhill rapidly from there. Throat started to burn, roof of mouth stinging, my tongue felt as if there were 'hairs' standing up on it when I tried to speak and started to have near panic attacks (again, much help received through this forum, practically and emotionally).Referred to maxillofacial surgeon by Dr, but my appointment didn't come through. I went private in the end as it felt as if I was heading for a nervous breakdown. Max Fax consultant sorted my head, he completely understood menopausal women as well, which in turn helped my mouth as the anxiety lessened. I knew the anxiety was making it much worse, but until I spoke with someone medical to help with all the issues I had, I had nothing left in the tank to help myself mentally. When mouth was at its driest, I used Oxylimelts, which helped stimulate saliva and helped control the panic. It does seem that it is the sugary things that have been helping everyone, it does stimulate that saliva! 8 months later, much, much improved, but I have been left with my brain 'thinking' my mouth is dry, which Max Fax says will go eventually, but I always tell myself that my saliva glands ARE now working and my mouth, although not normal yet, feels so much better and I can cope. There was much more to it than this, but it is a long post already for you to read, but I hope there are things you can pick out that will help. If possible, I would see if your Dr will refer you to Max Fax consultant, I wouldn't be as well as I am now without his help. I did go private (even though funds are very tight, best money I ever spent) and I did manage to pick the very best one for me. He was fantastic, kind, wise, with a great sense of humour, which helped tremendously. I went out the other evening and realised I hadn't taken the oxylimelts with me. I never use them now, but take them out for reassurance, so I think this says a lot! Sorry for long post and please, no one be put off HRT by my post, it appears my system is sensitive to medication at the moment because of CFS/ME. I would take it like a shot if I could. Lucyjo, there are some extremely knowledgeable women on here regarding HRT (hello Hurdity), but your Dr should be best placed to help you initially and then the forum is excellent for any subsequent HRT issues. Good luck! x
