Hi there .... after a few neurologists, a handlful of dentists and a confused GP, I finally saw an orofacial pain specialist last week who has diagnosed me with cluster-tic syndrome. I had never heard of this and there isn't a whole lot of information on the Net.

The other specialists were stuck on the idea of some form of trigeminal neuralgia or trigeminal neuropathy but it never quite fit. It get a combination of very brief shots of 'electrical' pain and numbness on the left side of my face. And then there are the HEADACHES .... it feels like my brain is going to explode out the left side of my face. The electrical pain will usually start being a problem a day or two before the actual headaches hit. This seems to happen like clockwork every three months and in between all I have is a tingly sensation that never really goes away. Its more anoying than painfull and certainly is insignificant compared to the headaches. Also, during a headache I can't bend my head forward at all or even lie down - that just intensifies the pain. Does that make sense?

After my first visit the dr gave me a sample of Imitrex tablets to take. I don't think they really did anything but I'm not sure because the headaches only last about an hour at a time. Then it stops suddenly and comes back again about an hour later. I usually get three cycles of this every time it happens and it all starts at either 9 pm or 6 am.  It goes on for a week or so and then its all over till the next time. No sleep those nights though.

My dr has now prescribed oxygen and we'll see if that helps next time around. I already have oxygen at home because I have lung damage from a genetic immune deficiency and a form of sleep apnea that needs low dose oxygen rather than than the usual CPAP. My concentrator doesn't go high enough but I have some back up portable tanks and the regulator goes up to 20 so at least I'm now prepared and hopeful that the oxygen will work for this.

If not I might have to go to the injectable Imitrex, although I've read here that some of you are on a nasal form.

Does all this sound like my dr is on the right track? I know you are not drs but I appreciate any feedback and insights you might offer. Anyone else here with that diagnosis?

thanks
Barb

Welcome Home Barb,

Sorry you had the need to find us though.

As you stated, I am not a doctor, but it sounds like you might possibly belong here.

The thing that concerns me about your post is the O2 script.  I know that people with COPD cannot tolerate a flow of over 4 lpm.  I don't know if that applys to other types of lung damage or not but if your doctor didn't specify a high flow therapy, I would hesitate to use it just because I had the necessary delivery equipment already on hand.  Thats just my opinion and I'm not trying to circumvent your docs diag and treatment.

Hopin you find what works for you and get some painfree time soon.

Dallas Denny

Cluster-tic is totally out of our league. A search in the U.S.'s largest medical library collection produced only one hit which was on target. It's the PDF file below.

IF, and only if, your docs want to venture on a program of treatment which is standard for cluster headache, then we can help you with some sound medical materials. Otherwise, my concern is that anything we suggest may be a situation where someting APPEARS to be cluster but is, in fact, some other disorder.

Your information suggests that the docs are starting to treat with cluster headache approaches--but I'd ask you to put this issue before them and then get back.

(Sidebar: Imitrex pills are not terribly effective for classic cluster headache. Injection is first choice; inhaler #2 and then with careful technique in using.)

Please keep us informed....

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Hi Barb,

I hope you're able to get that lousy charley horse outa your head!  :o

Sounds like you've been digging in and researching, so good on ya for that!!

Also sounds like you may have already found the info in the link I'm inserting here, but in case not, and if you're continuing on with imitrex, this info has proven to be invaluable to folks here:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

What Bob said about imitrex pills. Most of us find them ineffective compared to injections/inhaler.

Thank you for the replies and the links. My specialist is treating me for both conditions. I am on Trileptal and Lyrica which have really taken the edge off the Trgeminal Neuralgia part most of the time. Its strange that this will flare up though just before the cluster starts by two or three days. This dr has seen this conditon before -- he's actually a dentistry professor but he's considered an orofacial pain guru around here and is doing research at the Unversity of BC about rare conditions conditions such as this. I feel very fortunate to have him on my side. For the cluster headaches I just have the Imitrex and oxygen. I don't actually have COPD so my other dr (I have soooo many of them - I support a small industry!) says its fine to try it. Here's hoping!! It would sure be nice to manage some condition with a rather benign treatment without nasty side effects. I would be so happy if it works for me.

Barb

Given your doc's experience I think his present approach to cluster is conventional and o.k. Going to send along a couple of lists of standard treatments to use as a discussion tool with him and an article on cluster which will help you to understand the disorder.

Get back if specific questions arise.
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
=========

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]

Thank you - those links were very helpful. I have noticed that the headaches do not occur when I am on high dose prednisone for my lungs. At least there are some positive side effects to prednisone (besides the fact it keeps me breathing!).  I wonder if one of the reasons the headaches are worse is that my lungs have improved significantly and my prednisone dose is now very low.

I have also started taking melatonin. My dr thinks it might help and, like the oxygen, has a good side effect profile. I am optimistic of getting this under control.

In the meantime I get to be a case study on cluster-tic syndrome. I am not so sure I like being 'special.'  :-/

thanks for the help everyone. I really appreciate it
Barb

Being "special" is your contribution to all of us! Medicine only learns from trials/testing and when you realize that barely 30% of all conventional treatments (for all medical problems) are deeply gounded in good scientific evidence, well, you begin to see just how much we DON'T know.

So, thanks for your participation....

Welcome Barb, Like most guys on the board I can only advice you on the treatments for CH's. However, if you are having difficulties locating information on cluster-tic syndrome then maybe I may be of assistance.

I attached some information relating to a procedure that offered complete cessation of headaches for the sufferers of cluster-tic syndrome.

I hope this attachment works and if not I can email it to you....



Lefty...!

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Thank you Lefty. The attachment came through just fine. I will share it with my dr. I think he has already ruled out something like this because I did have an MRI, although not with the contrast they recommend. Maybe I should have it redone with contrast because it has been several years. I will ask. Also, both my CH and TN are pretty classic - I get the tearing and nasal congestion with the CH, and several things trigger the TN part of it. The weird thing is that they flare up at the same time, the TN usually preceeding the first CH by a few days. Then they settle down at the same time.

Although having something wandering about my brain is not a happy thought, it would be nice if there was a one-time surgical solution rather than the cocktail of wonder drugs I am taking now.

thanks again for the help
Barb

Hi Barb,
I am new to the ch page but not the ch problem. I was happy to find your post last night. Wow people are knowledgable and helpful here. I was amazed to see your post because I was at the neurologist and I too was given the dx of cluster tic along with a big list of meds. I live in the interior (about 3 hours away from you) and have been struggling with this disorder since 1996.The medical community seems to have very little information. I started doing web searches and taking in information to the dr's recently. I have a neuro report and plan regarding care from my neuro that you might find helpful? I am also interested in knowing about your dr.'s who are helping you. I would be glad to connect with you via email but am unsure how this works? I hesitate to give private information out on line. I am new at this? Hope to hear from you.
I hope you are having a good day :)
Carol in Canada

2behealthy wrote on Feb 4^th, 2010 at 1:26pm:

Hi Barb, I am new to the ch page but not the ch problem. I was happy to find your post last night. Wow people are knowledgable and helpful here. I was amazed to see your post because I was at the neurologist and I too was given the dx of cluster tic along with a big list of meds. I live in the interior (about 3 hours away from you) and have been struggling with this disorder since 1996.The medical community seems to have very little information. I started doing web searches and taking in information to the dr's recently. I have a neuro report and plan regarding care from my neuro that you might find helpful? I am also interested in knowing about your dr.'s who are helping you. I would be glad to connect with you via email but am unsure how this works? I hesitate to give private information out on line. I am new at this? Hope to hear from you. I hope you are having a good day :) Carol in Canada

       Where's Kreskin when ya need him?

          Potter

Hi Carol ... wow I know it's a small world, but I didn't expect to find someone this close to home. If you 'click' on my user name (charleyhorse) it will bring up a screen that lets you send me an email. I would love to hear from you.

Barb :)

This is very interesting to me!  Please keep up the posts here as well!  Good luck!!!

I sure will, thanks Joni.  I've had no CH for a few weeks now but every time a feel a little tingle in my face I brace for impact. At least I have the oxygen to try and I am very hopeful that will work. Not so optimstic on the TN side of things. After a month of good control, the pain came back terribly this morning. That's distrubs me because the cocktail of preventative meds I am trying seemed to be working. Sigh. I guess not so much.

Oh, I'm so sorry!  Keep us posted!