Hey everyone! I know how tough this is on mental health, being stuck in limbo waiting for a diagnoses/treatment options. I thought I would share some things that have quite literally kept me alive over the last few months. If you’re not familiar with my story, I’ll keep it short but in the beginning of March I started experiencing intense facial/ear pain and pressure along with globus sensation and clicking and popping in my throat when swallowing saliva and liquids, along with various other symptoms that aren’t as concerning for me. It’s debilitating and miserable. Here’s what has helped get me from day to day:
• someone that will listen to you vent/rant, validate your experience, and help pull you out of the panic and doom and gloom (for me that’s been my mom, sister, boyfriend, and the lovely people on this forum…I’m also about to start therapy)
• short walks around my neighborhood and swimming in the pool with a buddy
• something to do with your hands that helps distract your mind- I have found that adult coloring books and video games help me
• love and cuddles from your pets
• try not to be alone if you can help it
• if you can eat, get your favorite food or dessert on a really bad day (for me that’s Chick fil a nuggets and fries and milkshakes from Dairy Queen lol)
• find a series on a streaming platform that you can binge watch
• get out of the house and do something when you have the energy. If you made prior commitments before your health started tanking, try to honor them if you can. It may help with your mental state and make you feel more like a normal person, even if it’s just for one day
• massage therapy, specifically myofascial release on the throat/neck/jaw/face
• staying hydrated
• Ice packs!! Even if they don’t help with the pain, the extreme cold on your face and neck can help pull you back into reality
• (21+) WEED- now be careful with this one bc I noticed smoking/vaping makes the globus sensation and clicking worse and would actually send me spiraling into a panic attack, so I started eating edibles in small doses like 10-20mg. I would also recommend an indica or a hybrid as opposed to a sativa. (It’s medically legal in my state, don’t get caught breaking the law lol)
• listening to music!!!
• sleeping! Gets lots of rest when you are able
• if you can afford short term/long term disability or a medical leave from work- do it! I just started my leave yesterday and it helps not having that extra stressor
• get yourself a little treat for making it through each week. Last week I bought myself some new markers and this week I’m going to dye my hair purple. Just small things that may bring you some joy.
• try to appreciate the things about yourself that are functioning correctly. Tell yourself every day that you are beautiful and you deserve proper care. Tell yourself you will get better even when you don’t believe it.
I’m not a doctor or a mental health professional, so take my advice with a grain of salt- these suggestions are mostly coping mechanisms that provide temporary relief, but I hope this can help someone that is just trying to live day to day like me. Internet hugs for everyone
I love this!!! what a wonderful list of positivity for us all to tap into.
I’ll add:
make a playlist of the songs that make you feel happy and radiant
and one of songs that make you breath deeply and slowly and make your heart feel full
Spend time outside looking for the little joys
Take a mat or blanket somewhere. lay on it and watch the clouds moving, the blue above, branches and leaves, birds flying by…
WOW! Thank you so much for sharing your list, @a_catindisguise! It’s amazing!! I love the variety of your suggestions & @akc’s expansion of your ideas.
Being outside always lifts me up no matter what I’m doing (even hard yard work ). I think the sun or my activity or both help stimulate endorphin production and that is the “happy” hormone.
@a_catindisguise Such a great post. We are all struggling with so many things that are out of our direct control, it’s so useful to remember what we can do to help ourselves.
-I play The Good Facts Game: Identify 10 good facts that are real and happening at the same time as all the things I’m struggling with. The smallest things count! So right now my good facts are
I have this excellent forum for support and know that I am not alone
I have a computer and access to the internet
I’m drinking a lovely cup of cocoa
It’s a nice cool morning and I can see the sun rising
I have a cozy sweatshirt to keep me comfortable
My dog loves me
It’s Friday and that means pizza for dinner
My tomato plants have blossoms on them
My desk chair is very comfortable
I have reading glasses that work perfectly
Identifying good facts throughout the day isn’t meant to make anything else go away but rather a way to shift my mind from the red zone to the green zone and let it rest there for awhile. It’s a nice relief.
Thanks for such a positive post, it’s nice to all share our tips!
Being outside definitely for me, and heat packs helped. Faith and worship songs if that helps you!
I love your suggestions, too, @Chrickychricky. Just like you do, I have a friend who starts every day outside, close to sunrise listing 10 positive things in her life. She is a very optimistic person as she truly lives by the positives & not the negatives in her day. It’s been a good lesson for me!
We need more content like this for sure! The worst part of this whole condition is when it starts you literally have no idea what’s happening to you but you think you’re dying.
Getting a diagnosis took most of the fear away for me and having someone to vent to is so important, especially since most of us have been shrugged off by most. These are all great, I love this post 🩷🩵
I have one of those signs where you push in plastic letters to create a message. Mine says
“Another Day & I Am Still Here”
So, I take another step forward and stay with the battle. Honestly, it would be very difficult without this site. I have had several Doctors say they have no idea where to send me. At least I can see what my options are from people who have already been or in the process of going down this crazy path.
I am anxiously awaiting the stories of the two people who are getting ready to use Hepworth for their surgeries.
This post is perfect. My daughter (27) has been diagnosed with Eagles after having intercranial hypertention, 3 stents and discovering Eagles/jugular stenosis in the last 20 months. All the things that helped you, she is using for comfort in her day to day-her fiance/myself, pets, home, art, video games, kdramas, baking and still has periods of thinking we will not get through this.
As we wait for appointments with specialists it is so hard but these have helped. Her local doctors are not knowledgable and it was quite difficult at first because they had no real answers or solutions except diamox and weight loss. The facebook groups and this forum have helped me so much to help us find help, slow as it is. Praying the next three weeks we have some answers from surgeons in New York and Philladelphia that may the next step in her journey.
Thank you for all the support here. The posts about your experiences and struggles and posts like this that lift the spirit. I don’t think doctors, family members and friends quite understand this disease like those experiencing it.
@Shellymo - Please come back and let us know how the appointments go for your daughter & what course she plans to take for her treatment. I’m glad you have a specific direction to go now & have found some specialists who may be willing to help her. I’m sorry for what she’s been through, but it sounds like she has amazing family & fiancé support among other things. Thank you for being there for her. We have so many stories from members where their families do not support or even try to understand what they’re going through.
). I think the sun or my activity or both help stimulate endorphin production and that is the “happy” hormone. 
