Thank you I appreciate y’all
I’m having redness on my neck on both sides is this a normal thing after surgery? They prescribed me prednisone but this redness just started today.
If you haven’t contacted Dr. Nuss about the redness, I’d get on that. It’s possibly from the prednisone or pain meds as it looks like a rash. If it is a medication issue, you should stop whichever med it is immediately.
Your incision is barely visible. Interesting how he approached your styloid. You’ll certainly have an invisible incision once it’s healed!
Hi All,
I think it is a great idea to post things that each of us have discovered to cope with ES while waiting for surgery or just coping with this difficult disease. I’ve been on a OR wait list up in Canada for months and have had to learn to cope with sometimes severe vascular compression ES symptoms. These are my tips that worked for me:
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Was having vagus nerve symptoms of nausea and heart racing so read up on the internet on what to do to benefit your vagus nerve. One of the things on the list was gargling. I gargle morning and night vigorously. Also, anytime I am in the shower I do lots of loud gargling and this does help to loosen things up. Also, when I feel the vagus nerve symptoms, I get out of that position immediately and re-position. For me laying on my left side is a guaranteed vagus nerve symptom position, so this is avoided.
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Spend time learning what positions trigger what symptoms for you; everyone is a little different. I’ve learned that throat pain, ear pain and pressure, dizziness and tinnitus can all be positionally related in me. When I feel these things coming on or increasing, then I reposition to positions that I’ve learned are less angering. By consistently doing this, I’ve been able to cope better than before I learned about and explored the positions. Also, note that the blood has two venous routes to drain from your brain - the vertebrals (most active when you are upright) and the jugulars (most active when laying down). Jugular/venous ES typically is worsened by laying down. I found even propping up with pillows or reclining in a LazyBoy is not upright enough for me at times, although this has helped others in this forum. I sit on the couch with my head and torso completely upright and then tilt ever so slightly to the side, leaning my body on the couch pillow and my head on the extra pillow on the wall (couch backs up to a wall) to achieve a completely upright sleeping position, which has resulted in a few decent refreshing stints of sleep, when symptoms are severe. For me I’ve learned - Avoid sharp left or right turning of your head, avoid putting your chin down. Don’t do too much driving, as this aggravates the head turning. When speaking to people, position yourself so that you can talk without turning your head from your favoured neutral position (swivelling chairs are great for this), etc.
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Explore medications / other pills etc. My doctors were not willing to prescribe blood thinners because back in Feb. I was so dizzy that I fell while walking and broke my leg. Also, other than ES I’m perfectly healthy, so they thought the risks out weighed the benefits. However, they did seem to be OK with a baby aspirin a day (81 mg). This seemed to help. (Please note NOT to take asprin within 10 days of your surgery or an invasive procedure, as it affects the platelets ability to clot your blood.) I also am taking 1000mg of omega 3’s to try to help the nerves repair any damage. Other than that I’ve found no other medications/pills that really help me. There are lots of other meds posted and discussed on this forum that might be worth a look / try. But remember to always check with your doctor before starting a new medication or vitamin.
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Things that strap under my chin and support my jaw make me feel really good. For example, my bike helmet and riding my bike makes me feel amazing. This seems bizarre for a dizzy person, but I think a combination of the chin strap on the helmet supporting my jaw and my slightly extended head position which lifts my styloids off critical structures - leads me to feeling amazing - many times totally normal when riding my bike. Riding my bike every couple days was a godsend as it was like a temporary break from ES while riding (unfortunately there is snow here now so that may somewhat explain why my symptoms are worse in the winter months). Maybe you can find something like this too. Also, I got a N95 mask that has elastic bands and a face part that cups my chin - wearing this mask seems to take some of the pressure off of my jaw and I can often feel much better after wearing this for awhile.
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Bloating from menses and/or diet makes ES symptoms a whole lot worse in me. I’ve learned not to eat a lot of salty foods and to take steps, if possible to minimize bloating and swelling. I stay away from caffeine too. There is just not much room in my neck for all of the vital structures, so when you add a little bloating in the mix, symptoms can get really bad. Diet, salt and bloating / swelling often seem to account for the bad days vs good days I have. I would recommend paying attention to your diet and salt to see if you can find any beneficial modifications you can discover to help feel better.
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Try your best to get good sleep. This is really impossible, but every little bit helps. I’ve tried CBD oil before bed. It might have helped a little, but maybe not enough for me to keep using it because it also upset my stomach. Head and neck positioning is a real key. Also, continuing to lay in bed flat, tossing and turning, only makes symptoms worse for me. When I wake up, I basically get up or prop up upright. I only lay down when I know I’m so tired I will go to sleep quickly. Laying in bed awake is a bad position for me. Also, early morning waking with nausea is standard for me and I’ve no solution as of yet to that one. Additionally, for those that are dizzy when laying down, and if you haven’t found positions you can change to that make the dizzy sensation go away (best choice to reposition, if possible), then having a small light that you can use to orient yourself when your eyes are open and sleeping with really heavy pillows or a weighted blanket on you to provide your brain feedback of the correct body positioning in space can help combat the false dizzy signals also going to your brain. White noise machine can help with the tinnitus, if it is loud enough to disrupt falling asleep.
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Mental health. Avoid stress if at all possible. Stress increases blood pressure and blood flow to your brain. If the blood drainage from your brain is limited as in jugular vascular ES, then I feel the increased ICP symptoms increasing (brain fog, false visual sensations, other false feelings etc.) and things just get worse. Also, the struggle of getting a diagnosis and just surviving ES day to day takes a big mental toll. Positive self talk is key. Here are some I use: You are not alone. You are not crazy or going crazy. You are suffering, but you are strong, very strong. You are like the Energizer Bunny - nothing can stop you. You will get help soon. You will not give up. People do care about you, they just don’t understand. etc. Also, when suicidal thoughts creep in, “These destructive thoughts are the disease, they are the result of compromised blood flow from my brain, they are temporary, do not listen to these thoughts, they are false.” If you have really bad suicidal thoughts that you just can’t shake to the point you find yourself thinking of an actual plan - you MUST seek help. Also, feeling grateful can help reduce stress and improve mental outlook. I just am so grateful that I was born in a time when this disease has been described and has a surgery which has very good odds of getting my life back. There are just so many worse fatal diseases like brain tumours that this could have been. I feel luck not to have been born a 100 years ago, when they would certainly say I’m just a crazy middle aged lady and I’d never discover the reasons behind these symptoms and I wouldn’t have access to experienced surgical care. It’s hard to feel grateful when things are so awful, but I find that it does help. and … Finally - this group - this has been such a huge benefit to my mental outlook. Keep coming back here for support!!
Thank you to all of my wonderful, supporting ES friends on here!! You’ve been a life saver!!! 
I love you guys!!!
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Dizzylady,
Your final sentences brought tears to my eyes. We are so grateful to know that the time we all spend on here is truly beneficial for each of us. 
Your advice is AMAZING! You took a lot of time to work out these details for yourself & then to type them all here so everyone can benefit from what you’ve learned. WOW! Thank you so much!! Your info will be very helpful for our vascular ES members & moderators as we seek to learn & pass on good information. I’m really glad you’ve found approaches that help you deal w/ your pain & other symptoms.
I want to add one thing to your diet paragraph & that is - sugar is also very inflammatory. This doesn’t mean it needs to be completely dropped from one’s diet, but if you’re having a bad symptoms day, try to keep it a low sugar day as that may help, too.
One other thing of note is that fish oil is also a natural blood thinner so it’s helping boost the effect of the aspirin. 
Your final paragraph #7 is the crown jewel of your post in my opinion. Our minds are the key to how we approach the hard things in our lives. I LOVE all that you’ve said about being self-affirming & positive & counting our blessings when things are at their worst. Pity parties may feel good for the moment, but a positive mindset goes much farther in healing the soul & softening the harshness of pain & suffering.
For anyone who feels suicidal, we do have suicide hotline numbers listed on our forum. Click on the magnifying glass icon above right & type suicide hotline in the search box & the list will come up. Here is what you’ll see:
Thank you again, Dizzylady for sharing what you’ve learned. I appreciate you! 
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Hello Dizzylady;
I love your post and we love you too.
With so many bad news in this world during a pandemic, on top of our struggles with ES and for some members other health issues and challenges, I’m sure your post will be of great help to many. Your post made my day. I will make sure I read it again and again, for the great tips (dizziness is a new and most recent symptom for me) to try and the moral support.
I wish you the best and let us know how you go forward with your treatment. Stay safe.
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That’s brilliant advice, thank you so much for sharing! So glad that you’ve found tricks to help some of the time, & that you have such a great positive attitude, hang in there & hope that your turn for surgery will come soon 
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Thank you for all the advice. Keeping a positive attitude is probably the hardest part especially when symptoms get worse. I am 4 1/2 days post op and I’m having a bunch of fun new symptoms that I could see as new problems and feel bad. But I know it’s just another thing that’s going to resolve and get better. We just have to keep going one day at a time. And know we are going to get better! I refuse to let this stuff beat me, and I have faith in you and everyone else here to beat ES.
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Thank you Isaiah 40:31, your comments are always so helpful!!! 
I didn’t think about the sugar, but that could very well be part of it too. Been eating too much Halloween candy and things have gotten a bit worse, so that’s definitely something to explore. I also did not know that about fish oil, but that is a wonderful added benefit then!
Thank you for posting the hotline numbers too - that is a key resource and so great how you all have that for so many places.
Despite these tips / coping, I have to admit that the wait up here in Canada has just been too long and definitely not easy. So far there is no surgery date for me here on the horizon. I’ve explored the idea of travelling to have surgery in San Jose with Dr. Samji and he is willing to take me on as a patient. I was impressed with him during the zoom consult last week. Knowing there is help coming soon is definitely adding more pep in my step these days! I’m happy to have booked in my surgery with him for December 13th. Some people may think the 13th is unlucky, but it is going to be the luckiest day ever for me. 
You and all of the people on here do make such a difference!! Surviving ES has been one of the most difficult things in my life so far, and I’ve had some difficult things. Honestly there were times in this journey when you and Jules and the rest of the people on here made ALL the difference. There were times when no one in my ‘in person’ life really understood or could help me, but this digital ES online world was a lifeline and always had helpful information and positive comments to help me get though it!! I really can’t thank everyone for this enough!! I really appreciate you too!!! 
You are amazing!!
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Hi Aboulog1,
Thank you so much for your kind words! I hope that you will find relief from the dizziness and also have some successful treatment too! Are you planning on surgery soon?
I found the dizziness to be the most challenging symptom. It was sad when I got so dizzy and fell and broke my leg this past February, but the silver lining was I had to roll around on a leg cart for a few months, which was actually easier to balance than walking. My kids called me half woman half car 
LOL Anyhow, it would have been better to be more careful and not go walking in snow and ice to begin with knowing my balance was challenged.
Please be careful, don’t get discouraged and keep on hanging in there!
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Hi Jules,
Thanks so much! You’ve been wonderful and so full of helpful advice! Yes, I’ve decided to travel for the surgery to Dr. Samji, since the wait list is still many months long up here. My surgery is booked for Dec. 13th. I’ll definitely post here to update everyone.
Hi Calebp, thank you for your words of encouragement! I’m so sorry you are having new symptoms. My surgery is coming up next month. In preparation, I was reading a post on here that days 3-5 post-op are the most difficult usually, so it sounds like you are in that super challenging window. If you’ve made it this far, I know you’ll be strong enough to make it through. Just hang in there!!! I agree that we can beat ES and that we WILL beat ES. I hope you’ll be feeling better soon and you can put this all behind you! So glad you are keeping a positive mindset. Keep up the good fight!
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Healing does throw up all sorts of new nerve sensations, & the vascular adjustments will be strange too, hopefully that’s what the new symptoms are 
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That’s brilliany news, not too long to wait for surgery, so pleased that you’ve been able to arrange it…will be praying for you 
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I used THC for over 40 years now it makes me have worse intercranial pressure dizziness vertigo loss of balance sores on my head I think they are from my compressed jug vein not being able to clean the toxins put of my brain… shame it also helps me have a restful sleep…I finally have a surgery date may ,18 with Dr Hepworth.
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I’m sorry to hear about the awful side affects you’re getting from THC but am very excited that you have a surgery date! HOORAY! I’m putting it on my calendar tonight. If you haven’t done so, & would like a sooner date, you should ask to be put on a cancellation list. If 5/18 is the best date for you, then please disregard my advice. 
Good to have something to aim for, even if it is a long time away…
Absolutely thank you hugs
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Fish oils give worse headaches and make me feel weird as does vitamin e.
It’s interesting that something which really helps one person can have a totally opposite effect for another. It’s good that you know what to stay away from, Greatpersun!
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