I’m just wondering if y’all have tips on how to manage the day to day while (hopefully) waiting for surgery? I recently started Brilinta and am hoping that will help.
For those who are working, parents, pet-parents, or pretty much just anyone having to manage the day to day symptoms, do you have any guidance for how to make it a little more manageable? I think my biggest issues are just general fatigue, headache, brain fog, eye pressure, neck pain, and just kind of feeling out of it.
I can only suggest the usual tips, like trying ice or heat on your neck when you can, sleeping propped up to help with headaches, trying nerve pain medication if you think you have that… Some members have found muscle relaxants can help, and either lidocaine patches or topical gel, acupuncture or dry needling. Watch your posture too if you don’t already as the head forward position looking at a screen for example can worsen vascular symptoms, Idk if you work, but seating position etc is something to consider if you are. Alcohol made the symptoms worse for me, & heat & stress, maybe that’s not easy to eliminate!
It would be worth discussing with a pharmacist or doctor to consider drug interactions, but some supplements might be helpful- magnesium for headaches, & creatine has been suggested by @mekanX recently: Brain fog and creatine - Symptoms and Treatments - Living with Eagle
Hope that you can find things to help you
Thanks @Jules! You know, it’s so funny - I saw a chiropractor several years back who told me I should sleep with my neck flat/with only one pillow, and now I’m thinking that has only been making things worse! I appreciate the tips though. I do work and have somewhat of a commute, so I’ll look into these and definitely change how I’m sleeping! Thanks!
I manage my symptoms by being a professional bodybuilder. At least half of them dissipated the more muscle I built. Keeping my body fat lower helps as well. I also utilize dry needling quite a bit. It’s a constant battle. I’m just getting over a seizure right now .
@Kit_Cat - Getting yourself a wedge pillow will be helpful w/ sleeping w/ head elevation. You’ll appreciate having for post op recovery, too, as sleeping with significant head elevation post op (30º) helps reduce swelling in the throat & neck.
As far as posture at work & home go, if you’re on your computer or cell phone a lot, raise your screens to eye level as that will help you sit more upright. Looking down for hours a day is horrible for the neck.
@Adro - A seizure could be pointing to vascular compression, possibly of your internal carotid artery(ies), by your styloid(s) &/or calcified stylohyoid ligaments. It’s imperative that you get your styloids shortened as soon as possible as that situation can lead to a life threatening stroke. Have you had a consult w/ any ES doctors yet?
Hi @Adro, I’m so sorry you experienced a seizure and hope you are taking care of yourself.
I’ll admit I did not expect someone to say they manage their symptoms by being a body builder! That’s great though that your symptoms have reduced. I feel like I’m fairly healthy aside from these issues, although I often wish I had more energy. I have never done dry needling but it sounds interesting and from the small research I’ve done, I can see how it could be beneficial. Thanks for reply and I hope you feel better!
I am glad you have started the brilinta and hoping this will make a difference for you
Yes I would like to add that for me the fist big difference in my day to day was starting the blood thinner (plavix)
Then the styloidectomy made a big difference
But have started to take the plavix again 1 year after surgery and this has also been beneficial again
And now I have started to take the creatine , and this has also been a huge reduction in my day to day symptoms as well as reducing cognitive fatigue, with absolute gains in mental energy as well as tolerance to stress
What Jules has said is well put together as position or poor positions will take me right back to feeling like crap with increased symptoms no matter what supplements I am on
Hi! I stated Brilinta about 15 days ago. After10 days in I have felt much improvement in the way I feel, up wanting to do stuff much more than before. Maybe its a coincidence IDK. Ibut I have been feeling WAY better.
@Trisha, I’m so glad you found the Brilinta to be helpful! I’ve been on it maybe a week and I’m not sure whether I’ve noticed a huge difference, but I am going to try to incorporate some of the other suggestions mentioned here. I’ll also be patient and give it a little more time! That’s definitely reassuring that it’s been so helpful and I hope you continue to experience improvement!
I appreciate the tips though. I do work and have somewhat of a commute, so I’ll look into these and definitely change how I’m sleeping! Thanks!
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That’s great though that your symptoms have reduced. I feel like I’m fairly healthy aside from these issues, although I often wish I had more energy. I have never done dry needling but it sounds interesting and from the small research I’ve done, I can see how it could be beneficial. Thanks for reply and I hope you feel better!