u/doughnutcakes

I'm a 34 y/o woman and after one year finding out about RCPD I finally got courage to seek for a treatment and met up with a specialist who wrote me a referral to get botox on public healthcare and I should have the treatment in 4-5 months.

What has prevented me earlier is that I have OCD, panic attacks, emetophobia, fear of choking and extreme anxiety and sadly after finding out about RCPD those all spiraled because of being anxious because of RCPD symptoms.

I know the treatment would help me also with these issues, but I'm so scared that the side effects of the treatment would make my mental health even worse because of not being able to swallow properly etc. So I'm still not 100% sure if I can go for it for real. But I also don't want to continue living this way anymore.

I asked a few questions at the appointment but now I want to hear your experiences for a few things, I appreciate the answers:

1. I will receive 100 units of botox and I'm a bit underweight, I weigh only 50-52kg. Is the high dose of botox related to more severe side effects especially because I'm a bit underweight?
2. The doctor said there might be a bit of an issue because I have a small mouth and a tight jaw and my mouth doesn't probably open so easily as it should so he said he can't use the normal sized instrument (sorry English is not my first language so not sure if I use all the correct terms) and he has to use different one because of my small mouth and he said "it might affect the result" but he has used that already earlier. Has anyone experienced this same kind of a thing? I might contact him again and ask for more specific details.
3. How long did you have to wait after botox until it was comfortable to do sports with "movement" for the body like running etc.?
4. How did slow swallow feel like and how long did it last? This is the thing which has prevented me the most so far because I fear it would feel like choking and I would get panic attacks. Because of anxiety I already have anxiety with swallowing. I'm a super super slow eater because my fear of choking but I guess in this sense it's good to be a slow eater.
5. Did you have to sleep on a wedge pillow? If yes, which sized pillow did you buy?
6. I have never been under general anesthesia and I'm scared I would get nauseous or super short of breath or something. How did the GA feel like?

I appreciate if you read this far! Thank you in advance.

After one year about finding out about RCPD I have finally got courage to book an appointment for a specialist who will write me a referral to get botox on public healthcare. What has prevented me earlier is that I have severe fear of choking and anxiety with swallowing so I’m super scared of the treatment and I’m still not sure if I have courage to get it now. In addition I also have emetophobia. I already get anxiety daily and sometimes even panic attacks if I feel like I can’t ”breathe properly” or if something feels weird in my throat or with swallowing. I chew my food super well and slowly because of this.

But I also don’t want to continue to live this way because I get anxiety and panic symptoms of the RCPD symptoms also and I’m so fed up being full of air every day. Those who have same kind of fears and/or panic disorder, how did you manage with slow swallow etc.? I fear my panic disorder would peak even more because of panicking of slow swallow and other side effects.

Writing this as I once again had to return home almost right after I left somewhere because of RCPD symptoms, anxiety and almost getting a panic attack because of them.

Has anyone else experienced this same thing that even though you know RCPD is not life-threatening or dangerous you get so much anxiety because of the symptoms that you might even get panic attacks because of them?

And obviously anxiety and thinking about the symptoms 24/7 thanks to OCD makes the symptoms worse which makes anxiety worse so it’s a vicious cycle. And sadly finding out about RCPD didn’t make me feel better, it made my OCD spiral. Before I found out about RCPD I didn’t get anxiety of these symptoms because I didn’t know this is not normal and I didn’t know that I don’t ”feel normal” and that I’m probably low-level nauseous without me knowing it and that has made my feeling of nausea worse.

Yes I know about botox but because of my health anxiety I’m too scared of the treatment. I have severe fear of choking or not getting enough oxygen (which is kinda funny in a way that RCPD makes me feel like that already) so I’m super scared of slow swallow and not being able to eat.

Just felt like venting today. I’m really considering if I should start SSRI medication for the first time. Luckily I’m also in therapy and there we work with the anxiety but it’s only in the beginning.