Cluster HA and Tolosa-hunt

[PMA]

HI!

I am kinda new to this. Been with cluster headaches for a couple of years and looks like in cluster period again now. My case was a bit different, my two cluster period came the two times after a Tolosa-Hunt syndrom. I was wonder if someone have had a similar situation. Here it goes my story (short version). Couple of years ago I started to have really strong headaches that woke me up during the night. drilling kind of pain in the left side of my head, with red dropping eye. The pain was strong enough to make go to the ER several times. Curiously, when this started my family doctor (PCP, we call them that way in Spain) told me since the first moment that what I have seems like a horton or cluster headache an gave me a prescription for intranasal sumatriptan until the visit to the neurologist. That thing work for 3 o 4 days but for some reason stop working after that. Unfortunately, 2 weeks after the pain started and before i could see the neuro I woke up one morning with double vision. I was checked into the hospital where they told me I had a palsy of the III craneal nerv (cn), was unable to move the left eye to the left (side of the pain). After almost all test the neuro asked for (MRI, TC, blood, genetic study, LP.....) I was given a diagnostic of a tolosa-hunt (an inflammation behind the eye, cavernus sinus, that was paralyzing the nerv and causing the pain. After treatment with corticoids the pain and the paralysis went away after some time. although the paralysis went away after a couple of months, the pain remained. The neuro told me that the symptoms I have are for a clear cluster headache, but it was confusing because those not suppose to cause any paralysis. Anyway, they treat me as a cluster, put me under verapamil and started to tried triptams. I should be one of the lucky ones because orodispersible zomig (zomitriptan) works like a miracle with me, completely abort the cluster. after a couple of weeks of taking zomig and analgesic like crazy, verapamil kiked in and I could go back to the normality. Some headache for sometime but really soft and manageble. I thought that my story ended there but around almost a year I moved to the states. My neurologist here told me that for her i was a clear case of cluster headache, (although the palsy was really rare) since i had been for more than 4 months pain free it was time to start quiting verapamil. Bad idea!, when i was almost out of verapamil the pain came back and after a couple of weeks a palsy again but in this case of the VII cn. After an MRI I was sent to the hospital again where they kept me a couple of days at the hospital and did the same than in Spain (in this case with the corresponding huge medical bill, thanks god I work for a hospital and have a good insurance, (I am still hallucinating with your heath care system!!)). at the end, the same, tolosa-hunt. and back to the begining. again in cluster period loading up varapamil with one or two clusters a day. Luckily the preventive is starting to work. 

All that long story to ask, have anyone pass by a similar situation, where the cluster seems to be connected with another condition? I have been told that TH syndrom is a rare condition but which are the odds it came together with a CH  two times ?. Bdw, I have started to try D3 since my d3 came low in my last blood test. althogh I am taking only the d3 (10000IU) an the manganese (400mg). anyone knows if the rest of cofactors are also necessary?? I am not a doctor but I cannot see the utility of the rest of them, anyone can tell me something about this?

 Ok, this post was way longer than I was expecting! thanks to all that take it the time to read it.

[Pebblesthecorgi]

Welcome.  Sounds like you were lucky to have a intelligent thoughtful physician and folks who cared about follow up.  Its great to hear a story from someone who didn't go years without a diagnosis.  Your other condition (?primary, secondary or parallel?) is interesting as well.  In reality no one should wish to be a facinoma but at least you have a diagnosis and treatment options.  In answer to your question:  cluster headaches are generally an independent diagnosis and not secondary to another condition.  In most cases they occur  on their own and are managed in a focused way.  Certainly there are folks who develop clusters following trauma or infection while others have concomitant head pain conditions   When more than one thing in occurring it makes diagnosis and treatment a quagmire.   We hear many stories from individuals with multiple issues and diagnosis but I do not believe their are any other conditions which predictably progress to clusters.  I can only say some with episodic clusters progress to a chronic state and less often the opposite occurs.  Hopefully this well curated site will help you develop an effective treatment plan.