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Eagle Syndrome - Online Support Group

CBD and pain relief?

I have been hearing a lot of people bragging on the pain relief they get from using CBD oil &/ or gummies and was curious if anyone has given this a try for the pain from ES &/ or TMJ.
I was just curious to know what, if anything, you all thought about this as a possible option for actual pain relief. I also ask because although typically my pain level has been around a 3 for years it has been increasing over the past year slightly at first but the past few days I’ve noticed it has increased to at least a 5 or higher for more prolonged periods of time. Just my whole face seems to hurt, not if touched but in general.

Hi, I haven’t introduced myself here yet. I’ve had eagle syndrome for a long time. It started years ago with harmless tension, neck pain, sore throat and a lot of other body sensations, which are also described here in the forum.
I had to find out almost everything for myself because the doctors here are mostly at a loss. In January 2019, after a previous unnecessary and nonsensical surgery in 2018, my two approx. 5.5 cm processūs styloidei were finally shortened from the outside. This brought an immediate improvement in pain and tension. Unfortunately, I haven’t become completely pain-free, but at least so far that I can slowly start doing sports again. Swimming and a kind of Tai Chi / Qui Gong work well for me. Even if sport and a lot of head movements aggravate the symptoms and also make regular rest necessary, I think that I am slowly making progress.

Since 2018, I have got experience with medicinal marijuana and CBD (cannabidiol, non-psychoactive substance of the hemp plant).
Before that, I had been prescribed almost all common painkillers, which didn’t work well and/or had severe side effects. I reject the use of antidepressants, anti-epileptics and neuroleptics and see these as the last option.
After a long search, I found doctors who were understanding and prescribed medicinal cannabis. By trying almost all the varieties that were available in the pharmacies here, I quickly found that some flower varieties help very well while others doesn’t or make it even worse.
I think that the most decisive factor is probably the different terpene composition in marijuana…
(see https://www.leafly.com/news/cannabis-101/terpenes-the-flavors-of-cannabis-aromatherapy).

CBD

The whole time I also took about 50 mg/d CBD in capsules, mainly to reduce the unpleasant effects of THC. However, CBD is also said to have a variety of good therapeutic properties like anti-inflammatory, neuroprotective, anti-epileptic effects and relaxes the muscles in dystonia and dyskinesia, inhibits nausea, kills cancer cells and promotes bone healing. It also has an anti-anxiety and antipsychotic effect. These effects you can notice at doses between 40 mg and 800 mg daily (according to www.cannabis-med.org).

Because of the neuropathic pain, I increased the dose to 120 mg twice a day a month ago. Together with the medical indica marijuana (current varieties: Cannamedical “Dark Star” or Aurora/Pedanios “LA Confidential” or Tweed “Bakerstreet”) with good results. The tingling, burning and stinging in the throat is gone, the muscles are more relaxed and all that remains is a dull and more pleasant feeling. When the CBD effect wears off, the pain slowly comes back, so I take the capsules every 12 hours and can avoid carbamazepine for even longer.

I also take Wobenzym capsules, which in my country contain approx. 70 mg bromelain, approx. 40 mg trypsin and 100 mg rutoside trihydrate, against the inflammation and pain. I notice it clearly when I leave this away for a few days.

This is my story in a nutshell. I hope it is useful. If you have any questions or are more interested in my topics, I can be more detailed. Just ask.

Best regards

Great information Dude!

Hi TheDude!

Thank you for the great information! You’ve clearly done your homework. I’m curious if you had bilateral ES & if so, were your styloids removed back to the skull base or just shortened a bit? Also, do you know if your stylohyoid ligaments had any calcification on them & if so, were they removed along w/ the styloids?

If you had a thorough styloidectomy & had the s-h ligaments removed, I’m very sorry you’re still having such a level of pain. If the styloids were only shortened, & if calcified ligaments were left in place, then that could be the root of your ongoing problems. Regardless, I’m glad you’ve found a solution for your pain. Being able to control pain is definitely life giving. I hope your healing continues & the range of activities in which you can participate increases.

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Hi Isaiah, thanks for your kind words. This is a really great community. I also wish the best to all Eagle warriors and stay strong!

I actually got the PS shortened on both sides after an unnecessary surgery in the first hospital, where only the Lig. stylohyoidei have been removed.
Actually, it was already agreed to shorten the PS and the Lig. to check for calcification and, if necessary, to resect. The pathology report says that the Lig. were also calcified bone-like. However, I only trust this hospital to a limited extent anymore. The CT report before said “incipient calcification”.

After the first resection, the symptoms got worse until the PS were finally shortened in another hospital.
They shortened about 3.1 cm on the left and 3.3 cm on the right. The right side also causes significantly more discomfort. There the PS was curiously curved outwards in the last centimeter. As my doctor said, you don’t have to completely remove the PS, because muscles and ligaments are still attached there. (e.g. see https://en.m.wikipedia.org/wiki/Stylohyoid_muscle). This doctor also confirmed to me that the first procedure was unnecessary because the PS was paramount.

However, I still find the remaining ps (the base) to be very massive in diameter. I have also asked myself whether the ligaments may not have been completely removed and there are still residues that are causing problems. In the next few days I’ll have another CT done with vascular imaging. We will see.

Thank you for your reply. I’m glad you’re getting a follow-up CT scan to see what the current state of your styloids & s-h ligaments is. Interesting about your styloid being curved out at the tip. When people post their CT scans here, we see all kinds of crazy styloid configurations. Even in the absence of elongations, extra thick, pointed or curved styloids can create ES symptoms. If yours is/are extra thick at the top, nerves & vascular tissues can still be affected.

It is not a problem to have the styloids removed to the skull base. I & many others on this forum have had that done w/o consequence to the muscles & ligaments which are attached to it, and most importantly, it has given us nearly complete recovery from our symptoms. Often when some of the styloid is left behind there are eventual repercussions i.e. regrowth or returning symptoms. I also had my s-h ligaments removed from styloid tip to hyoid bone. Though they weren’t fully calcified, they had intermittent calcification down their length & that was enough to warrant their removal.

I’m including a link to the doctors’ ist for countries outside the US in case you haven’t looked at it recently. There are some good doctors on there for your country.

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Ok, thanks again Isaiah, this is really interesting. What about the ligaments and muscles when the attachment point is gone? Can you simply do without it or where are they re-attached?

Made appointments. In 2 weeks I will know more - or have a lot more questions. It would be really miserable to go through it all for the third time, especially because the first time was so “beautiful and trustworthy”. You can’t tell anyone!

You can do without all the attachments, I’ve noticed no difference since surgery to eating, swallowing , talking etc. I don’t know how far back the attachments are removed, they’re certainly not re-attached, or if they’re just left flapping about! All I know is that surgery worked!

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Hi TheDude,

I second everything Jules said. My symptoms are by & large gone, & what’s left is barely noticeable. I am very physically active so that part of my life back was mandatory. I do long distance hiking w/ significant elevation gain & drop. I can carry a daypack w/ 2-4 L of water in it plus food. Our hikes last 6-8 hrs, & I get no suggestion of my former ES symptoms or pain. Surgery was definitely worthwhile, & there have been no negative repercussions for having my ligaments & styloids fully removed.

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Thank you for responding and sharing your experience. I typically do not take anything for pain, as I tend to need more than the average person to get any relief. So I just deal with it as best I can until it passes. However I have someone who keeps bringing up medical marijuana because they think I should be taking something for my aches and pains rather than just living with them. In all honesty once I got used to a low level of pain daily I only notice it when it increases. This past week has been rougher than usual. Still not a 10 on the pain scale but significantly much more noticeable then what I consider ‘normal for me’.
It’s good to have information going forward as one never knows what the future holds.

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I also had everything removed from base of skull to hyoid bone. Doc also had to cut through the digastric muscle and the sternocleidomastoid muscle on left side. Left side had been partially removed intraorally in the center. What was left was thick and looked like a marble or knuckle shape in the center. Now 18 months after the last surgery, I am rewinding my muscle pain and neck pain and shoulder pain back 6 to 7 years in therapy. It feels like every pain and ache that accumulated in the last several years is going away one layer at a time in reverse. I am realizing that all the muscles that were held hostage just contracted or atrophied as a result of the impingement and the scar tissue.
In every aspect, I feel like my cervical spine and head an shoulders just could not function as the Eagles took over. I can assure you the ligaments that they remove from the styloids are not missed.
CBD oil has been mentioned for pain since I cannot tolerate drugs, but I keep avoiding it because of other health issues and a henetic condition that causes many drugs to be toxic and partially because I do not want to be disappointed if I am genetically unable to use it.
I almost want to believe it will work and do not want to find out that it is also harmful to me.
I have been finding physical therapy for my neck and spine and shoulder to be successful and not toxic unless of course my therapist hurts a cervical vertabrae, but he is trained to treat osteoporosis patients and my bones looked improved on my last scan.
Keep on researching and advocating for yourselves.
My doc had to cut two muscles, not sure how much, but they are playing a part in my recovery. The digastric and sternocleidomsdtoid. Both are important in neck and jaw function. Both wer frozen before surgery, so I have needed therapy to get them retrained. Because of that I have other muscles and joints that are not functioning properly in my shoulder or caused the problem.
After you have are sure that no Eagles is impinging, you may want to get physical therapy to improve the tight or misfiring muscles or just attack scar tissue. I like to swim, but still cannot use my left shoulder properly, but I will one day. I am getting close. I hope to be ready to swim and dance when covid is in our past.

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