I found myself in the emergency department again on Monday night, luckily being treated by doctors that know me well and take me seriously. I think that they are looking forward to my surgery as much as I am.
After five doses of IV Morphine and one dose of IV Dilaudid over the course of 7 hours or so with little relief (this sounds like a lot - I’ll note I’m in palliative care and take high dose opiates on a daily basis), a doctor that has treated me many times decided to try something different and gave me a dose of IV Decadron. I got more relief from this steroid than I knew was possible. The relief is lasting over 24 hours later, and she said would probably last a couple of days.
She recommended that I reach out to my provider about potentially taking this steroid on a regular basis until surgery so I can try to avoid emergency department trips, though they are more than willing to help me with pain relief when it gets so bad that I am at the 8/10 that I was on Monday night and cannot function or stop crying. Part of the reason it’s necessary for me to go to the emergency department when I’m in this much pain is because of my primary condition, vEDS, causing concern for dissection anytime the pain is that bad. I understand but it’s exhausting. It would be nice to have one more tool in my arsenal to avoid these types of painful flareups.
Has anybody else been put on long acting steroids like this leading up to surgery? Has anybody else been put on Decadron, specifically? I would love to hear your experiences. I have messaged Dr. Hackman about this as well.
Edit: I’ve finally communicated with my doctor(s) and am looking at dosing myself with IV Dexamethasone (Decadron) 4mg (same dose given in ED) every 3 days. I am very relieved to know this is coming, as since the dose I was given has totally worn off, my face/neck/head pain is back in full force and I can barely function.
I’m so sorry that you’ve been in that much pain again, it’s so rough for you…I can’t recall anyone mentioning being on long term steroids, some members have had steroid and lidocaine injections into the tonsil area which has helped for a bit, although it doesn’t work for everyone & not sure if you could have that with your vEDS… hopefully Dr Hackman will get back to you quickly about whether you can be on Decadron near your surgery date.
Hope that it continues to keep your pain under control, sending you a hug
My experience (with my Mom) is Decadron is a wonderful short term drug but was quite harmful long term… in our experience muscle wasting was significant but couldn’t be helped. I would wonder if a low dose prednisone could knock back the inflammation until surgery (?) (no clue what dosage of ‘low dose’ would work for you and/or implications prior to surgery). HOPE you get help and/or surgery moved up due to your challenges.
I cannot tolerate prednisone or prednisolone - or others like them unfortunately. This is why they went with Decadron on Monday night! I was on IV Decadron x2 daily during a two week hospital stay in 2021 and it went well. I am wondering if giving myself an IV dose via my PICC every 3 days or so until surgery in a little over a month would be suitable. I asked Dr. Hackman and will report back!
It’s great that you know what works & doesn’t work for you, @slekeille so you can advocate for the most effective meds. You’re in a very tough situation due to how advanced your vEDS is, but you’re such a trooper continuing to work & manage a husband , as well as your own medical needs. You’re a great example of one who is keeping her head up when the chips are down. You inspire me!
The pain with ES is an experience thats for sure ! You are not alone in this one, im schedueld for surgery in february next year.
My doctor recommended a cocktail off naproxen and paracetamol to relive some off the pain.
I’ve been using this for about 2-3 months now and it works most off the time. But i guess it all depends on how severe it is for you.
I take 2 pills off naproxen(vimovo) 500 mg, one in the morning and the other one before bedtime. I supply with 500 mg off paracetamol as needed or how much is safe for you. Naproxen or vimovo as i reffered to is a kinder NSAID, that also is supposed to help with stumach/liver problems when taking anti inflammatory drugs.
I would also add a little bit off movement, like going out for fresh air and then also take a hot shower after.
Stretching lightly can also ease a little bit, but as i said it depends on how severe it is.
Hope you are finding this helpfull in a way.
I appreciate your insight and that you have told me what works for you! I am SO glad that NSAIDs and Acetaminophen are working for you. That is the ideal situation.
My situation is a little different. Firstly, I am allergic to NSAIDs and if I weren’t I would not be allowed to take them due to GI and bleeding disorders I live with. Secondly, I am in palliative care and on high dose opiates on a daily basis and have been for years. For this reason, while the meds are the only reason I function, they’ve also left me with hyperalgesia - in other words, I am more sensitive to pain that I would be if I were not taking opiates on a daily basis (this is one of the negative side effects, unfortunately). The pain that I experience from Eagles Syndrome in my neck, face and head is debilitating. I can hardly function, most of the time, at this point. I do not often leave my house or get out of bed/off the couch. I even work from the bed/couch these days, instead of in my beautiful home office that I love so much. I really hope surgery changes this. I cannot take hot showers due to dysautonomia - they must be cool and I must sit on my shower chair. I do get outside on the porch as often as I can (it’s still warm most days, here) to sit with my dog and breathe. I was still walking my dog twice a day until about a month ago (in my wheelchair most days, but still) - now even that isn’t possible.
If I didn’t have a surgery date with a hopeful end to this level of pain in sight I am not sure what I would do.
My inability to take NSAIDs is the kicker, here. I can’t take any OTC anti-inflammatory and the only options I have are stronger steroids. For this reason, I’ve finally communicated with my doctor(s) and am looking at dosing myself with IV Dexamethasone (Decadron) every 3 days (the same IV steroid I was given in the ED on Monday night). My doc is just figuring out the dosage and will likely send the Rx to the pharmacy that provides my infusion supplies tomorrow (I have a central line that I use for PPN and hydration as well as a surgical feeding tube I use for nutrition).
Thanks again for your input and advice! I wish you ALL the luck on your upcoming surgery in February. Mine is January 8th and while I am SO nervous it cannot come soon enough!
Yeah… i thought it may be a little bit more severe for you.
I’ve been living with this ES for 5-6 years and it has been a living hell. But i see now that people have it worse than me, wich is posetive in one way and negative in another.
Hopes and prayers to you !!
The way you describe your facial pain breaks my heart because it’s exactly what I had. It was debilitating and I was bedridden for months on end. I had to go on disability and I’m not even 30. It wasn’t shooting or stabbing pain, but rather an intense pressure in my cheeks and nose and the sense that a rubber band was being clamped around my head.
I was in a very very bad place mentally as well.
The good news is that this severe pain has gone away completely since my styloidectomy with Dr Hackman. I am not perfect and still have other shit but I got my life back, I’m working again and able to do things I dreamed of back when I was bedridden.
There is hope.
When people asked what my headache was like (it’s been gone since the surgery done by Dr Hackman!), I’d reply “imagine wearing a full-face motorcycle helmet which is way too small. 24/7”.
Definitely no need to compare - your suffering is valid as well. I’ve been living with ES since about 2010 (presumably when backdating symptoms after diagnosis this spring) but the debilitating symptoms began one year ago on Christmas.
I am so glad for you. I am desperately hopeful Dr. Hackman brings me similar relief because I don’t know what I’d do otherwise. The head pressure is insane. A rubber band is a good way to describe it. The face and neck pain is almost like boiling water being poured through them on the inside. Constantly. But the pressure and pain in my lower skull, upper scalp and right eye area is what’s truly debilitating.
This is a very close description for me as well. So glad you got relief.