Need to talk about wedding day fears

Can you discuss this with your doctor, maybe schedule botox morning of or day before to help? Are you hiring a DOC? I really think that would help with stress, it helped me a lot on the day of. Or even someone to do month of planning? It sounds like being over-prepared & organized will be the best way to deal with this? I'd also discuss it with your photographer so she knows to position you with one side facing the camera more than the other, if you have an episode.

I 100% feel you! I have permanent nerve damage in the left side of my face. I have always had a lot of pain and headaches growing up but it shrugged it off as migraines because my mom had them her whole life as well. Well a few years ago I ended up having nose surgery and after that the pain and all the symptoms were ten times worst. Had to start going to specialists and have all kinds of tests done. Finally I reached out to my Bio-father and he told me he has the same thing and that it was hereditary. I was then diagnosed with exactly what he had and the dr.s said I had always had it but always just put up with the pain and once I had the surgery it brought out a lot more issues and more pain and was put on meds that do help but the pain never goes away. Mine doesn't sound as severe as yours as I don't look like I have had a stroke but I do look like the left side of my face is swollen. For sure a fear that I will be having a bad day but I know we will both look beautiful no matter what!

View Quoted Comment Yeah mime swells too. When it first happened 9 years ago, some neurologists thought maybe I had bells palsy so severe that when the nerves grew back they grew back wrong. But they also said it never acted like Bells Palsy.

My current neurologist said it is more similar to trigeminal neuralgia, except mine also affects the facial cranial nerve. It actually has a lot of similar symtoms to cluster headaches and I did used to get migraines for years.

The meds suck, but without them I'm a mess. I actually don't mind the botox although I joke with my Neuro that he should give me a little on the other side of my face too. I am pretty proud that I got off the opioids after 8 years of use. But if I have a flare on my wedding day, my only option is valium which isn't ideal for a marriage.

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I have the Trigeminal neuralgia and am on a controlled substance for the rest of my life to help control it. It totally get it. Only you know what may work for you as a "just in case". Have you tired any for of CBD? I have it in a vape, a relief stick and gummies and they all seem to be super helpful when I am having those bad days.

View Quoted Comment Ive talked it over with my neuro and we have plans to do my botox 2 months prior to the wedding. Botox lasts 3 months and he doesn't want to do it sooner because there is always the risk that botox can cause the face to droop for a couple months.

I don't have a DOC yet, but discussing with my Matron of Honor (my sis) which family friends would be perfect for the job. Have 2 in mind, just need to discuss it with them because I know they are reliable and will get things done. They helped with my sister's wedding.

I've been planning things, especially on bad days when all I can do is rest. My ceremony has been written and most of my vendors are booked. I'm doing a lot of things diy and have half of it done already with a year and a half to go. My goal is to have everything done and ready way before my wedding.

My photographer is actually my FSIL. She is amazing and has actually worked around my face problems before. We do a yearly photo with his family and last year I had a bad episode and couldn't be there for the actual shoot. She had them leave room for me, took my photos a couple days after and added me to the family photo. It looked great! I've included the photo so you can see her work. I'm the one with the purple hair and my fiance is behind me by my left shoulder.

View Quoted Comment I've been tempted to, but discussed it with my GP. I get a "random" yearly urine test required by the federal government thanks to taking a schedule 4 drug (valium). If they find traces of CBD, they can require my GO to stop prescribing valium for me (thanks opioid epidemic!). My state has approved the use of CBD, but it doesn't have federal approval. Also in my area of the state, GPs don't approve of the use of CBD. Mine threatened to stop seeing me if he knew I was using it. I with my Neuro could prescribe in my state. He is all for the use of CBS since it is safer than opioids.

Until then, I get a cocktail of gabapentin, lamictal, baclofen, celebrex, meclizine and cymbalta.

I have anxiety, so I'm worried that it will cause me to not enjoy my wedding and obsess over stupid things. I've been on medication for a while, and that's helped tremendously, so I'm hoping anxiety will leave me alone especially on that day!

View Quoted Comment I get panic attacks (Yeah I know, nothing like dealing with multiple things). I've had a few while planning, but then I just do some slow breathing and remember the reasons I love my fiance and why we are getting married. Maybe that will help?

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I need to keep this in mind! Thank you

I'm sure you'll be beyond beautiful the day of your wedding. It sounds like your loved ones will also do whatever they can to lessen your stress and make sure that you are a blushing bride! I'm sorry to hear about all the pain that you suffer from. Have you ever considered surgery? My mom had TN. At first they didn't know what it was. It was so bad that she would literally stay in bed for days at a time and just cry from the pain. I did endless research and found out it was TN. I then looked up treatments and discovered that John Hopkins was the groundbreaking and leading TN hospital in the US at the time. Long story short, although quite scary, my mom had the surgery performed a few years back and it's like she got a second chance at life. I'll keep you in my prayers and I hope everything turns out to exceed your expectations.

View Quoted Comment Thanks so much. I agree I think they will be there for me.
I've discussed my options with a few different neurologists. I was able to get a direct eyebrow lift. I went 2 years without being able to open the right eye and they hoped it would keep me from losing the vision in that eye. The plastic surgeon did a great job and I'm so thankful that on good days it makes that eye appear normal (but still legally blind in that eye).

I then talked to him about other options, including surgery. We pretty much exhausted other options like tens unit, acupuncture, etc. Looking at my MRI, CT and PET scans there is nothing obstructing or pinching the nerve itself and they don't believe even a nerve block would work. When the nerves grew back, some even grew back in the wrong locations. Surgery could mean even more damage and the nerves could still return so it basically isn't worth the risk.

It's ok though, I've come to terms with it and sometimes it can even be amusing. My sis and I laugh when at a concert and during an awesome guitar rift, my face will instantly fall during the highest note...then back to normal in a couple minutes. It's so comical.

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That's good! I did my botox 1 month out, I was happy with the results but obviously your neurologist knows what's best for you. If it's in budget, I would hire a professional DOC. Mine was $1,000 but I saw a few for $300-$600. They are a lot more reliable than a "friendor" who isn't a professional and is also a guest so they get distracted. That's crazy she edited you in like that, you can't even tell. So cool!

I’m so sorry you’re going through that...I really hope you can be stress free on your wedding day! My fears are my anxiety for one because I have panic attacks every day, but my photographer also has anxiety so she’s going to help me stay calm. My other fear is I walk with a limp from a car accident. I’m scared I won’t be able to walk in my dress, I really struggled at my dress fitting when the seamstress had me walk. I also can’t stand more than 3 hours now from pain unless I’m just really medicated. I’ve been weened off Gabapentin and only take over the counter stuff now, it isn’t enough to be pain free. I don’t want to hurt and be fatigued on my wedding day. I’ll be wearing a brace under my dress but that’s about all I can do. I just don’t want to be sitting around my whole wedding, I want to dance and have fun. I don’t know how well I’ll feel.

View Quoted Comment I've really considered doing that and started looking at who is in the area so I can see if we can fit it in our budget. I don't want to worry about whether things are getting done.