Long story short–recently diagnosed super talented and sweet trigeminal nerve mediated head shaker in the US. Nothing working so far–not antihistamines, steroids, nose nets, compression hoods. We will start electro acupuncture next week and see if it helps. However, what I am really curious about is that they have developed a somewhat successful treatment (helps up to 50% significantly) in Europe called PENS (percutaneous electrical nerve stimulation) that is NOT available in the US. Can someone with better connections than I please help get this treatment approved? It has almost zero serious side effects and can be done under sedation. What the hell USA. This is a debilitating thing and to hinder this option is ridiculous. What needs to be done to get this equipment approved here? My horse is currently unrideable and his career may be over. Why is the best option for his treatment not an option for me. Who approves this stuff? Rant over. Seriously, any suggestions on speeding approval would be appreciated.
I had a lovely OTTB hunter who developed what I believe was this in the mid-90s. Nothing but a hairnet would help and we couldn’t show under most judges with it. I feel your pain.
PENS is only moderately successful and is not permanent according to the Veterinarian published papers from various trials. I have also read from owners, their horses relapsed and further treatments were not really successful. Sigh.
Have you tried the Equimax protocol yet? There is a FB page explaining it called Equimax Protocol. A few annual treatments, may resolve the Head Shaking disorder. Permanently.
Good luck. It’s an insidious and misunderstood disorder
I will take a 50% success rate after three PENS procedures compared to all the other not so successful therapies and drugs that you can not ride or compete on. Here is a good summary of the latest research on PENS. Dr Roberts is a vet in the UK specializing in this.
https://beva.onlinelibrary.wiley.com/doi/full/10.1111/evj.13174
PENS. About 50% remission. Average remission times is less than 10 weeks. 10 weeks is 2 1/2 months.
Not permanent.
I post this on every head shaking topic I see, so if you’ve read this before just skip it.
12 yo OTTB mare about to move up to Prelim eventing became a head shaker overnight, seemingly. After many diagnostics pinned to trigeminal neuritis secondary to neurologic Lyme. Heavy doses of special antibiotics helped but it would recur every year around June 1st. I finally gave her some of the CBD oil I was taking out of desperation as it was helping my nerve pain. 4 doses, 1 a day, of 10 mg equivalent of CBD squirted inside her lower lip and the symptoms would disappear for the season. Barn mates always wanted me to give it prophylactically but I always waited for clear symptoms to demonstrate to myself that it worked. It worked for 5 years. She died last fall of unrelated causes. I miss her terribly.
If you decide to try this, get good quality CBD not gas station stuff. And don’t expect to see a difference until dose 4. At least I never did. It may not work but it’s cheap, easy and noninvasive. Best of luck.
Is it not approved in the US or is there just no one in the US who has bought the equipment and been trained to do it?
Per Dr Roberts (the vet at Bristol University who has been leading this research) the equipment had not been approved yet for use in the US. She recommended to try electro acupuncture, the next best option.
I fully realize there is no cure. I am happy to do maintenance treatments of whatever electrical treatments help my horse to be able to continue his just-started career. I would be ecstatic for 10 weeks of no headshaking at this point. And if a further treatment helped maintain that I am fine with that.
The Equimax protocol cured our horse. Permanently. As in no special anything for several years.
Google ‘Head Nodding in African Teenagers’. There IS a connection between this and HSD in horses. Then check out the Equimax protocol FB page. Certainly, worth the $ to try.
Good luck.
It appears that percutaneous electrical nerve stimulation IS used in the US and there is published literature about it’s use in humans going back decades.
Article about it’s use, written by a US doctor: https://www.spine-health.com/treatment/pain-management/percutaneous-electrical-nerve-stimulation-and-electrical-muscle
One of the many papers on pubmed with US authors: https://pubmed.ncbi.nlm.nih.gov/10534590/
Guessing this is more a case of no one has purchased the equipment and is familiar with it’s use for this purpose in equines, like Gardenhorse suggests.
You might have luck scouring through the published literature for physicians near you who use it & contacting them to see if they’d be willing to follow a protocol for your horse, along side your vet. It’s a long shot, but maybe you you’ll turn up someone who’s curious enough to give it a whirl.
Although it does sound like the results are pretty underwhelming.
I am far from an expert in this, but my understanding is that the FDA’s regulation of animal medical devices doesn’t really require approvals, just accurate labeling and marketing.
“There are currently no requirements for FDA pre-market approval of medical devices intended for animal use. Animal medical devices and diagnostic aids are, however, subject to the general provisions of the Act that relate to misbranding and adulteration.”
It does seem surprising that no US vets have looked into it yet. Although I guess I have no idea how expensive the equipment is.
In any case, I wish you luck. Severe headshaking sounds like a horrible problem to deal with and to watch your horse experience.
Updating this thread to say that my gelding had a complete work up in 2022 at UPenn that ruled out any cause other than trigeminal nerve mediated headshaking. His nerve discomfort is now active year round and at rest. This is a change from the initial manifestation which was only during exercise and seemed more seasonal. He has not been ridden or worked since 2021. He seemed to have a break in symptoms for no reason for about 6 weeks last summer with no treatment and I got hopeful but then all his symptoms returned. It seems he is triggered by almost anything now, or nothing. Now he has also developed free fecal water syndrome especially worse when his headshaking is very bad. I saw that one of the main contributors to FFWS can be stress, and I worry his discomfort is causing him stress and more pain than I care for him to have. I have tried electro acupuncture, steroids, antihistamines including cyproheptadine, a UV blocking mask which seemed to help for awhile but now I think it may have just been coincidence, diet changes including adding and subtracting alfalfa, etc.
His case seems very severe to me. He is on no medications or treatment right now as nothing has helped him. I have no hope of ever riding him again. Studies show other meds such as gabapentin or tegretol have limited if any effect and have significant side effects, not to mention cost. My dilemma is this–at what point should I consider euthanasia for his well being? He certainly has many happy moments still but he also seems quite uncomfortable much of the time. He still eats well, socializes with us and his herd and retains his personality. But I do think he is experiencing chronic pain. He will often snort, rub his face or nose and wiggle his nose continuously to try to self stimulate out of the discomfort. Attaching a video of him this morning. This is a typical video of him these days at any given time. I am so sad for him. But when he canters over to the fence for a treat from the car when we drive in the driveway I see that he still has joy. I am in such a dilemma.
Thank you all for your thoughts.
it’s a tough thing to deal with, my guy is very seasonal but I did consider euth because he was too dangerous handle when he was having symptoms. Red laser treatment is what worked for him - prolly about 80% improvement for him.
I’m very sorry 
Here’s the thing, though: do you want him to not have any joy? Putting them down when life is still okay is a blessing. We have the incredible gift of foresight, and when we know things won’t improve, why would we keep them around only to suffer?
I’m so sorry. You have certainly tried all of the conventional approached to no (or very limited) avail. I didn’t go a far as you did when my wonderful eventing mare became a headshaker, to the point when my DH suggested we consider euthanasia. FWIW, we believe that her headshaking was secondary to a Lyme infection that centered on her trigeminal nerve.
May I suggest one low cost, what the heck might as well try it intervention? It worked for my mare initially and if she would show signs of starting to headshake after that about once a year (the nose wriggling thing) and then I’d treat her and it would go away. But year one, it stopped her when she had really strong symptoms.
Treatment was an oral dose of CBD totaling 10 mgs per dose for four days. I used a high grade human oil (Flora Sophia), 0.25cc delivered with a TB syringe inside her lower lip once a day for four days. By day 3 she was asymptomatic, but I gave one more day. And that was pretty much it for a year. Then I did it again when needed (which was about every 10-12 months for the rest of her life).
I doubt this would work for every headshaker, but I decided to try it because CBD worked for the nerve pain I had, I was desperate and I figured why not? If you try it, please let me know if it works for your horse. And if you do decide to euthanize, I know you will do it out of love and respect for him.
I feel for you as an owner, that’s such a hard one. As a person who has human trigeminal neuralgia, I can tell you that it’s absolutely debilitating and hard to know where to put myself when I’m in a flare. I survive on tegretol and accupuncture alone, although I’m not sure how/if those equate exactly to head shaking in a horse. The “zings” from trigeminal pain I can best equate to touching a hot wire over and over. I’m not sure if that helps or hurts, but quality of life with this disorder is really tough.
The suggestion to try CBD is a good one and one that you may want to consider. Red light therapy is also a good option. Full spectrum light therapy, for me, is too much. I do better with red light than other forms. At the end of all of this, if he seems to really be struggling, I think euthanasia would be the kindest option. He’s lucky to have you as his person <3
I had a severe headshaker, it started the Spring after she had Lyme. I am so sorry that you are going through this. I kept my mare probably longer that I should have in hindsight. We lost her to a strangulating lipoma so I didn’t have to make the decision to PTS because of the headshaking but I question if I was fair to her. It’s tough, it sucks. The hardest part was she’d have a few days or weeks of remission and we’d think we found a treatment and then she’d relapse and it was heartbreak all over again.
I will say my mini started with headshaking and it turned out to be a very complicated dental/sinus issue but I’m sure since you had a workup done this was ruled out.
Jingles for you both.
The emotional roller coaster is very real. Every treatment option I get my hopes up only to have them dashed. And then when he happens to have a few days symptom free the same thing. It is very difficult to watch and experience.
Hugs- I euthanized my head shaker May 2024. I miss him everyday. Hardest decision to make but sometimes the kindest thing you can do is to release your horse from suffering.
