Cluster-Tic Syndrome

Hi folks,

Well it looks like all the drama I've experienced in regards to having such severe attacks of TN - may not just be TN after all.

My doctors are theorising at the moment, that I'm also experiencing Cluster headaches, and they may be contributing as a trigger for the TN. They then call this "Cluster-Tic Syndrome" meaning I get both TN & Cluster headaches :( these conditions are joined only by their seperate connections to the Trigeminal nerve. So at any one time, I may have one or the other of these disorders but over time they eventually layer over each other and I do now get them both at the same time....

The theory in Cluster headaches is the hypothalmus sends a signal to the arteries and veins around the trigeminal nerve, causing them to dilate (swell up) to allow more blood flow through. Because these veins are then around the trigeminal nerve, it's setting off / triggering more attacks - so I'm all at once suffering two separate yet oddly jointed disorders.

Here below is the transcript I've found on what Cluster-Tic Syndrome is in brief:

The diagnosis of cluster-tic syndrome is given to patients in whom cluster headache and trigeminal neuralgia coexist.[1] [110] This rare condition is characterized by repetitive volleys of excruciating lancinating pains that usually are described with trigeminal neuralgia, but in this syndrome they occur superimposed on the typical features of cluster headache. These tic like pains commonly are precipitated by light cutaneous or mucous membrane stimulation as in typical trigeminal neuralgia. Concurrently the patient also suffers from the typical clinical features of cluster headache. Often the two pain syndromes occur independently of each other for months or years before their simultaneous occurrence. In general, the cluster-tic syndrome is difficult to treat and may require a combination of therapies. Carbamazepine has been reported to abolish the tic like pains, whereas standard anticluster agents are required to treat the features of cluster. Solomon et al[110] described four patients with this syndrome who underwent microvascular decompression of the trigeminal nerve; compression of the root entry zone by a blood vessel was noted in all four patients. In two of the three patients in whom there was facial nerve exploration, an arterial loop was found at the root entry zone of the facial nerve. Postoperatively, all patients experienced relief of the neuralgia component of the syndrome; the features of cluster were not altered by the surgery, however.

I feel this could be my problem as well. My pain began as cluster headaches and evolved into constant facial pain…not the typical TN…definetly ATN or atypical facial pain…either way, I still get the cluster headaches and they are awful and the facial pain has not let up for an entire year. It is there all the time except when I am sleeping. Did you get surgery? Or do you think you will?

Hi Katie,

Sorry did not see your response earlier. Meds causing me havoc right now. Eyesight’s “wonky” to say the least, eyes keep wandering (probably nystagmus) and getting double vision too. Soo tired all the time it’s not funny.

I know exactly what you mean Katie, I am as yet what began first, the CH or the TN. Interestingly, CH can cause TN like symptoms so it’s hugely ironic that both you and I actually developed TN also. But it kind of makes sense to me, as with CH as I understand it, the hypothalmus tells the veins and arteries to expand / swell up, they pump extra blood and if there is any compression around the trigeminal nerve with those arteries, how can it not affect the trig nerve in a detrimental way.

I am SO sorry to hear how much pain you’re in! That is horrible! Do you take preventative medication for the CH? I haven’t ever been prescribed meds for it, I had to fight my doctor just to get meds for the TN to start with, but now have a new doctor, so am in negotiations - but he wants to check everything out and is redoing a lot of my tests with me.

I will get woken by attacks through the night, and woke just this morning with a combo attack of CH & TN together :frowning: I could’ve cried, but put on my poker face instead as my new puppy needed to go for a walk - so took him for a 5 minute walk and I nearly fell over from lack of balance, kept finding myself wandering sideways into the street and had to sit down 3 times in the gutter. It makes me feel like my heads going to explode :frowning:

It’s what my doctor has issue with - my apparent / supposed “ease” of handling huge pain levels. It drives me nuts that they make assumptions that my pain is not “that” bad, because I’m wearing a stoney face. I’ve lived with pain all my life and even though I will never accept it and will fight it all the way, I’ve learnt to control my emotions and features more as I find that tears on my face, trigger TN as much as the wind does, and muscular movement of features also is a trigger while in the middle of an attack.

As for surgery, I want to do it, and yet I am scared of pursuing the idea in case it does not work for me and I then have gone through a major surgery that did nothing to benefit me. I want to get access to a better quality MRI machine - the ones locally are only a 1.5 tesla machine - so ideally I need to get referred to an MRI testing centre that has at the very least a 3 tesla machine instead. I do want answers, that is the least I can do for myself.

What about you Katie? Have you had the surgery yourself? Or are you looking into it? I have to say, if I knew I could stop the TN pain at the least, that I would be reducing my pain by at minimum around 50% just in my head. The rest of my body is another story.

Cheers ~ Kerry