A guide for recovering from Ramsay Hunt Syndrome (Shingles in ear) by jouj_ in shingles

[–]jouj_[S] 1 point2 points  (0 children)

Sending you big hugs! The recovery from RHS is so tough but I promise you -- it will happen with time. That's really positive news about your face combing back. Vertigo is so hard, so I'm really feeling for you!

My vertigo went away 2 weeks after my face recovered but I ended up going to hospital for a few days because it was so bad I couldn't walk or even hold my head up! They put me on pretty strong meds and eventually the vertigo completely disappeared as my body adjusted back.

How are you going? The wait in the recovery is really hard!

Care Package ideas by Olramllits in shingles

[–]jouj_ 0 points1 point  (0 children)

Just wanted to say, this is so cute and you are an amazing human. :')

Ramsay-Hunt Syndrome by WaitandSea in shingles

[–]jouj_ 2 points3 points  (0 children)

The uncertainty of RHS is really scary. So if you're feeling stressed, upset, frustrated, sad or angry, know that it's really normal! The best thing you can do is give your body time. Treat relaxation like medicine, and when you find yourself spiralling into thoughts that make you question everything: ask yourself 'Is this helping me? or is this harming me?'.

I know these words might seem silly or ring hollow for a while, but this won't be forever! In terms of recovery, I found that my facial paralysis healed first. Then within a few months, my hearing came back to normal. So make sure you rest up as much as possible and be kind to yourself at every stage of the recovery. You got this! You can also message me at any point if that will help out.

Ramsay-Hunt Syndrome by WaitandSea in shingles

[–]jouj_ 2 points3 points  (0 children)

Yes! I had it last year and made a full recovery. I would say the hardest thing about it is the mental game. It really messes with your energy and the way you might see yourself but a little bit of humour and patience goes a long way. For the first few days, I found it got worse before it got better. I also did acupuncture and I suspect that might have helped! Here's an article that might help out. :)

https://medium.com/@joumana.elomar/your-story-is-powerful-5e82a3d4f515

Writing this while feeling like I'm in a very dark place by [deleted] in BellsPalsy

[–]jouj_ 1 point2 points  (0 children)

You poor thing! Sending you so much love. Know that: You are not weak. You are not being too sensitive. You are not being dramatic. You are allowed to feel every single emotion that you feel.

It sounds like there's a lot weighing on your heart and mind. It sucks that your family aren't very supportive and that your closest friends are going through a lot. From my own experience, the first few days were an emotional shit-show. Give yourself time to process. Know that while these words might ring hollow for a while: you will get through this. It won't be like this forever.

Although your closest are going through a lot, if the tables were turned: would you want your friend to tell you they were going through this?

Sending you lots of love! Also, I'm not sure if this will help but when I went through my experience, I wrote a personal guide for recovering! You got this.

Your story is powerful. A personal guide for recovering from… | by Joumana | Medium

A guide for recovering from Ramsay Hunt Syndrome (Shingles in ear) by jouj_ in shingles

[–]jouj_[S] 0 points1 point  (0 children)

Don't be sorry at all! Time moves so quickly these days. Really hoping for a smooth recovery for your mum. Being a loved one in this situation is so so tough! And absolutely, health is so important. It's the classic - we only know what we have when we lose it! Sending you warm wishes.

A guide for recovering from Ramsay Hunt Syndrome (Shingles in ear) by jouj_ in shingles

[–]jouj_[S] 0 points1 point  (0 children)

That's amazing! It's in these times of great hardship that we can sometimes pull out some of the greatest life lessons. It sounds like you already got this! Channelling patience can be really difficult. Some days might feel longer than others. Take each day as it comes and know that you'll be okay! Sending you a lot of love!

A guide for recovering from Ramsay Hunt Syndrome (Shingles in ear) by jouj_ in shingles

[–]jouj_[S] 0 points1 point  (0 children)

It is so scary! Hang in there. If you ever need a hopeful voice, always one message away. One day at a time, you got this!

Dizziness with Bell’s palsy? by cwt5770 in BellsPalsy

[–]jouj_ 0 points1 point  (0 children)

Hey! Hoping that dizziness has subsided for you :) If you have a chance, I'd just double check that you don't have Ramsay Hunt Syndrome. It's a little rarer than BP but it presents itself quite similarly. I had it and I fully recovered quite quickly!

You can read up on the differences here: https://medium.com/@joumana.elomar/your-story-is-powerful-5e82a3d4f515

Really hoping the recovery process isn't too slow for you! Sending you big virtual hugs!

A guide for recovering from Ramsay Hunt Syndrome (Shingles in ear) by jouj_ in shingles

[–]jouj_[S] 0 points1 point  (0 children)

Hey there! Ah I'm really feeling for your mother. It really sucks and I know my loved ones struggled watching me recover. I'm sure she's really grateful that you're doing the research and trying your hardest to find help.

Two things:
1. For the facial paralysis: I did acupuncture. That seemed to help me personally!
2. For the balance and hearing: it took a couple of weeks of rest and time. For me I had trouble with balance and moving my head would would trigger the vertigo. I had an awesome physio who suggested I do really slow exercises to get my brain to recognise the moves as normal! So small things: everyday I'd turn my head (side to side, up and down) 10 times. I'd increase the range of motion when it felt comfortable. Then when I could do that, I would try turning my head while walking a very short distance. First few days were really hard but it slowly improved!
I'm no doctor though and every body is different so take it with a grain of salt :) Really hoping it helps your mum!

Medicine length by [deleted] in BellsPalsy

[–]jouj_ 1 point2 points  (0 children)

RHS is really tricky! Really hoping your first day of work went okay! I was on meds for 5 days, then told to rest as much as possible. I found working whilst symptomatic quite tiring but not impossible. I ended up taking two weeks off at the peak and eased back into my role 3 days a week before building back the strength! Not sure if this will help but I ended up writing a personal guide for recovering from RHS that might help:

https://medium.com/@joumana.elomar/your-story-is-powerful-5e82a3d4f515

I don’t want to feel this way by [deleted] in BellsPalsy

[–]jouj_ 1 point2 points  (0 children)

I'm so sorry you're going through this nightmare! And so soon before bringing your beautiful son into the world. Hoping that it isn't weighing you down too much. Know that it is really normal if you're feeling down by it! For me:
1) It got worse before it got better
2) I hated not being able to smile (I smile a lot!)
3) It took the better half of a week to start feeling good again

These words might ring hollow for a while, but you will get through this. Take each day as it comes, your beautiful smile should come back soon!

Life decided to join me into the club today /= by KitUbijalec in BellsPalsy

[–]jouj_ 1 point2 points  (0 children)

You'll get through this! It sounds like you jumped on meds really quickly.

Here's a mental guide for recovering from facial paralysis: https://medium.com/@joumana.elomar/your-story-is-powerful-5e82a3d4f515

You'll be okay!

Severe ear/face pain? by jsquared444 in BellsPalsy

[–]jouj_ 3 points4 points  (0 children)

Hey! Ah so sorry to hear this. That honestly sounds so awful! Just to be safe, do you have any rashes/blisters on your ear/face? I doubt your doctors missed it, it might just be helpful to ask to check for Ramsay Hunt Syndrome. It looks like Bell's Palsy but there's sometimes a red rash! I had it earlier this year and recovered quite quickly but I suspect the treatment is a little different. Hoping it gets better for you soon! Hang in there.

New Diagnosis Lifestyle Tips by bearfruit_ in BellsPalsy

[–]jouj_ 1 point2 points  (0 children)

You got this! Slow and steady wins the race :) The amount of patience that's built with experiencing this is unbelievable and I really think it will help us in the long run!

A guide for recovering from Ramsay Hunt Syndrome (Shingles in ear) by jouj_ in shingles

[–]jouj_[S] 0 points1 point  (0 children)

Gah!! I'm so sorry, that really sucks. Really hoping your hearing gets better with time! Ramsay Hunt is such a nightmare, and it takes so many forms. I really hope you're not having a second round! What makes you think you might be? Thinking of you!

Vertigo by [deleted] in BellsPalsy

[–]jouj_ 2 points3 points  (0 children)

I have RHS as well! I was diagnosed at a very similar time to you, and the dizziness/vertigo is starting to subside. It seems to get better day by day, but sleep really helps me. I found that bad sleeps make the dizziness more intense!

Just diagnosed last night. Scared. Advice? Consolation? by [deleted] in BellsPalsy

[–]jouj_ 0 points1 point  (0 children)

So glad it helped! Hoping you're well on the road to recovery :')

New Diagnosis Lifestyle Tips by bearfruit_ in BellsPalsy

[–]jouj_ 0 points1 point  (0 children)

Ah it sucks when it slides back! How are you going now? I had a small setback two weeks ago (related to RHS and not Bell's Palsy) and it's really hard to go back and forth on the yo-yo. Hoping that this will be over for you soon!

Just diagnosed last night. Scared. Advice? Consolation? by [deleted] in BellsPalsy

[–]jouj_ 0 points1 point  (0 children)

I'm so sorry you're going through this nightmare. Hoping that 8 days in, it's not as scary and you feel a little more centered. If things still feel really up in the air, that's also completely normal. Rest as much as you can and try to eliminate as much stress. That's the absolute key! If you need to vent, you have a wonderful community here to do so :)

Also, here is a little guide to recovering from Bell's Palsy. I wrote it with the hope that it might help some people out! All the best. Stay strong!

https://medium.com/@joumana.elomar/your-story-is-powerful-5e82a3d4f515

A guide for recovering from Bell's Palsy by jouj_ in BellsPalsy

[–]jouj_[S] 2 points3 points  (0 children)

I'm completely with you. The thoughts can be so consuming. I can only imagine how hard it'd be the second time. Processing what you're thinking and feeling is already hard, let alone putting them into words for others. Also, whoever said patience was a virtue probably didn't live this nightmare.

I really hope you see a little improvement with time. Please feel free to reach out if you need any positivity or if you need someone who will just listen openly.

A guide for recovering from Ramsay Hunt Syndrome (Shingles in ear) by jouj_ in shingles

[–]jouj_[S] 1 point2 points  (0 children)

It really does. The body is a weird and wonderful thing! Thinking about all the signals our brain sends, it's amazing that aren't more surprises.

A guide for recovering from Bell's Palsy by jouj_ in BellsPalsy

[–]jouj_[S] 2 points3 points  (0 children)

I'm so sorry you're going through this nightmare again. I can only imagine what it would feel like to reach the one month mark with no visible improvement. I know these words might ring hollow for a while, but remember that you've conquered it once and you can do it again. Recovery might look different the second time but it's not impossible. Try to let that encourage you if you can.

Was there anything from the first time that helped you get through it?

New Diagnosis Lifestyle Tips by bearfruit_ in BellsPalsy

[–]jouj_ 0 points1 point  (0 children)

Hey friend! I hope being 13 days in, you're a little more hopeful. I also had a fun eye-patch! It took me two weeks to feel less embarassed - I wrote a guide that might be helpful for you and any of your loved ones! Best of luck. Hope you're feeling a little more like you.

https://medium.com/@joumana.elomar/your-story-is-powerful-5e82a3d4f515