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Eagle Syndrome - Online Support Group

Cannabis for ES

Recently, there’s been interest in the medical applications of cannabis–a few years ago Dr. Sanjay Gupta of CNN publicized a case of a young girl with severe seizures who was greatly helped by CBD (cannabidiol) oil.

Studies indicate that cannabis compounds may be effective in treating neuropathic pain.

"Cannabinoids for neuropathic pain"
Fine PG, Rosenfeld MJ
Curr Pain Headache Rep. 2014 Oct;18(10):451

[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2503660/pdf/tcrm-0401-245.pdf]
(“Cannabinoids in the management of difficult to treat pain”)
Russo EG
Ther Clin Risk Manag. 2008 Feb; 4(1): 245–259.

Since much of the pain of ES is neuropathic, caused by nerve pressure/inflammation due to the elongated styloids/calcified stylohyoid ligaments, perhaps cannabis can be a useful option in ES management.

I read all these posts by people using powerful drugs with heavy side effects to manage the symptoms of ES, and wonder whether there could be alternatives. Has anyone here ever tried cannabis to manage their ES symptoms and what was his/her experience? I found one past post which referred to cannabis but perhaps others have tried it since then.

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There is a person who used to be on this site who has nerve pain that has persisted beyond several ES surgeries. This person is using CBD to help control that pain & has told me that it is taking the edge off & helping life be a bit more tolerable. Beyond that, I don’t know of anyone who’s tried it for pre-surgical ES pain.

Ben’s Friends also have a Facial Pain group, and they’ve had quite a few discussions about this- it might be worth a look! (You don’t have to join if you don’t want to, you can just search for discussions you’re interested in). There’s lots of info, from people more knowledgeable about it than we are!

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Anecdotally, I have used cannabis to help manage my ES pain, just THC though. I have not tried CBD topicals though I want to.

For me it helps best when I smoke or vape it and it just kind of takes the edge off my pain and it mostly helps my neck pain, not as much my headaches. Kinda makes me forget about it/distracts me. I use edibles sometimes but they usually get me too high. I find it’s easier to control the dosage when I smoke or vape it, because it wears off faster. I have been using THC for a long time so I am used to the feeling; the effects might not be pleasant for someone who is not as experienced. My friend with cancer uses a vape that is 1:3 THC to CBD and that might be preferable for people who can’t tolerate the high.

Right now I am on a blood thinner that has decreased my pain a lot so I’m not really relying on THC for pain relief but it is a good thing to have in the Arsenal.

I use CBD for a painful foot. I have used cream and drops in the mouth. It DOES work. No high. It relives inflammation. I also have a “card” for medical because I have some serious anxiety and panic disorder. I haven’t officially used my card, but my daughter has a card for illness and I have tried some drops. I have used the 1:1 drops that are equal parts THC and CBD. They really help my feelings. I also use the 5:1 . That one is much better. I don’t feel like I am high. I just feel like ME in a good mood. Fully functioning and feelin’ good. Not giggly or silly… just feeling like I want to feel like that all the time. I haven’t noticed how my neck/throat feels if I take it. I will take notice next time. I also work for a hospital and the prescribing doctor works for this hospital. THIS HOSPITAL won’t allow it’s employees to have ANY THC in their body if they get tested which is ridiculous. They can make MONEY off of the doctor and the card, but don’t get caught using it. It’s very misunderstood. There is no written “policy” on it either, conveniently. I still use it off and on. It makes me feel THAT good that I take the chance. I have worked here 23 years and I said F it. Sooner or later it will be legal everywhere and it should. Why is it okay for me to go home and get blasted on alcohol, which is actually poison, and it’s fine?? The world is messed up. So, just my two cents. I use Charlottes Web CBD. High quality and it DOES work for pain and anxiety. Use it regularly. You will see. And just another FYI… CBD DOES show up on any drug test because it has trace amounts of THC. Any respectable company would send your labs out to see what level of THC you have in you… but many just don’t want to deal with it. Face the facts people! Weed HEALS. Oh, and just a side note. I tried my daughters vape pen of THC. She said it’s a really “crappy pen” and it doesn’t work so good… so mom when you try it make sure you inhale really deep… and then hold it. Okay, so you KNOW where this story is going, don’t you!!! So I did that and I coughed like an 8th grader and it was horrible tasting. About 15 minutes later I could swear I heard all of my deceased Kin laughing at me from beyond the grave… they were all staring at me laughing and pointing… like with that “fish eye” lense that makes your face real big and distorted… and I was like OMG… I am Bleepin’ stoned out of my friggin’ mind here. I tried to act cool and I didn’t say that I was ready to call 911, or else just call for take out. ?? It was a toss up… Pizza or 911 !!! I was just messed up. I announced " I am taking a shower", which was really code for " omg! I have to hide in the bathroom so no one knows how STONED I AM!!! So I hid in the bathroom and sat on the toilet saying things like GOD, please help me… oh no… if I faint I will never live this down… OMG… if I have to go to the ER, all of my coworkers will know I am BLOWN OUT! This chat with myself went on for like 5 minutes then I got in the tub in cool water and talked myself down saying " I can NOT afford and ambulance ride… I am fine… I’m stoned!!! HAHAHAH… I will try to enjoy this. I have no idea how long I sat in that cold tub but needless to say… NO VAPE FOR ME. I have no idea what the strength that vape was. If I had gotten a 1:1 vape for ME I would have been okay. My kid is a seasoned vet with the vape. I’m a “MOM”. HELLO!!! I never let on that I was chatting with dead relatives… I just said that was too much for me. HAHAHAHAH. Start small… just my 2 cents.

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Thanks for the hot tip Butterflykg. I think that starting small/low dose is good advice for any medication. Dosage can be increased if necessary but starting low keeps side effects at a more tolerable level or doesn’t cause them at all AND let’s the body get used to the new substance gradually. I’ve had some scary drug side effects (Rx drugs not illicit :innocent:) so can totally relate to what you went through.

Hi Butterflyjkg, that doesn’t sound like a pleasant experience, but you handled it well. Perhaps this information is still helpful:

Dose determination for THC, Sativex and cannabis flowers

When determining the dose, a trial phase is essential to determine the individual dose. The tolerance and thus the appropriate dose varies between different people. Therefore, at the beginning of a treatment with THC / Dronabinol / Sativex, a small amount should be taken, which can then be slowly increased until the desired effect is achieved. This creeping dosage can be started, for example, with 2.5 milligrams of THC (Dronabinol) twice or only once per day and then increased by 2.5 milligrams per day daily or every two to three days. For Sativex it is recommended to start with one spray in the evening, on the 3rd day an increase to one spray in the morning and one in the evening, etc. Average daily doses are 15 to 20 mg THC (Dronabinol) or 6 to 8 sprays (Sativex). If necessary the dose can be increased to up to 50 milligrams per day and more. But there are also people who cannot tolerate or need more than 5 milligrams of THC per day.

The THC of cannabis flowers (marijuana) can range from around 1 to 24 percent. It is recommended to start with around 10 to 20 mg, i.e. this amount should be weighed with a fine scale and then inhaled or e.g. in the form of powder or tea. With a THC content of 20 percent, 20 mg of marijuana contains 4 mg of THC.

Patients who start cannabis flower-based therapy often need daily doses between 0.1 and 0.3 g, corresponding to a monthly dose of 3 to 10 g.

These patients often refrain from applying for reimbursement. At prices of 20 euros (about 24$) per gram, this medication is the cheapest cannabis-based therapy.
For comparison: heavy cannabis users consume several grams of cannabis every day. However, they have become used to higher doses.
When inhaling natural cannabis products, the tolerated and effective dose can be determined well, as the effect occurs after a few minutes.
After eating or drinking, the effect only sets in after about an hour, sometimes after 30 minutes or only after two hours, and is usually weaker, but lasts longer than after smoking. If the oral intake (eating, drinking) does not have any effect, a slightly higher amount is used after a few hours or the next day.
Not only the optimal amount of THC, but also the frequency of intake must be determined individually at the start of treatment with THC. Some patients prefer to take it twice, morning and evening, while others prefer to take small doses several times a day. To relieve nocturnal symptoms, many patients also like to take a larger dose before going to bed. Even with acute treatment, such as In the event of a migraine attack, a larger amount of THC is preferably taken once, at the risk of possible psychological effects.
The optimal dose and the type of dosage depend on the type of disease and the individual responsiveness and tolerance of THC. Different doses can be taken on different days and adjusted according to the symptoms.
You should be aware that even an accidental overdose generally does not cause any harm, for example if fear arises from unfamiliar psychological effects. The psychological effects usually subside on their own. However, it is better to slowly work your way towards the desired and effective dose. In this way, undesirable effects can largely be avoided.
(According to the german association for medicinal cannabis. See full text in german: http://www.cannabis-med.org/german/download/magazin.pdf)

I’ve found that THC makes my throat symptoms worse. I like my 1:1 THC CBD pen- it at least helps my anxiety without making my throat symptoms worse. I also use CBD drops occasionally- I don’t know that they really help but I still have the bottle so I’m going to finish it.

Highly recommend the 1:1 stuff if you don’t really like being high (I don’t) but still like the physical benefits. :slight_smile:

Hi kittchenita, that is quite possible and I would also confirm - depending on the cannabis variety.

Unfortunately, there is often a generalization. It is often said that cannabis is THC and either it helps or it doesn’t. It’s not that easy here either. In my experience, it really depends on the individual strain. So far, more than 100 different cannabinoids have been detected in the hemp plant, which are divided into 12 groups. THC and CBD are two of those. They do not always all occur in one plant and the concentrations are different. This means that the effects vary considerably between the varieties. Hundreds of other ingredients could also cause a so-called entourage effects and thus significantly increase or change effects. But that is still in the current research.

In any case, I can say for myself that varieties that smell and taste more lemony in the scent are hardly suitable, as they actually make the pain worse. Typical for me with many so-called “Haze” varieties and most of the sativas that you can buy here. People who smoke cannabis for recreational purposes often like the Haze strains, perhaps because they don’t make you too tired and stick to the couch. So they are very common.

Fortunately, some indica strains work quite well for me. As I wrote in my first post. Most of the time, these varieties smell and taste more earthy or like pine or conifers, etc. These I feel more into my body and they relax in contrast to the sativas, which tend to get high and stimulate the head. (Even if these statements are still too general and not always applicable, this clue can help.)

Unfortunately, there is hardly any way to find out other than through self-research and self-experiment, if you have decided on this approach. In my opinion, it is worthwhile to differentiate and inform a little more about cannabis and to try out a few more varieties.

CBD works great for me to catch the “dizzy” from THC and in the currently high doses of 2 x 120 mg daily even works against the “sharp” nerve pain, at least in combination.
It would be interesting to know if this is the case with other people as well, even if no THC is involved.
Fun fact: The WHO has classified CBD as harmless.
Nevertheless, care should be taken when combining CBD with certain other drugs, as CBD can increase or change their effects.

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Thank you for another very informative post, TheDude. I have not tried medicinal canabis so truly know nothing about it. You’re providing me/us w/ a great education here.

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Totally agree! I unfortunately notice the same symptoms regardless of strain (mostly just that my partially paralyzed vocal cord feels more paralyzed and the surrounding tissue more irritated) when I’m “high”. I usually have half a gummy (10mg) if I’m going THC only because then I get the benefits without the bad parts. I do this often before bed if I suspect my pain will keep me from sleeping.

Unfortunately (for your curiosity, fortunately for me), sharp nerve pain is one of my ES symptoms that at this point still comes and goes, so I feel like it would be hard to study how much CBD helps with that even if I did consume it regularly.