First let me commend the long timers who post here.  You are encouraging and supportive in the most incredible ways.  Going through the many areas of these discussion boards has given me lots to think about and consider.

I was diagnosed with Cluster Headaches last November by a Neurologist agter having gone through about 5 years of various investigations.  While the diagnosis seems to "fit" better than any other possibilities to date, reading many of your personal experiences and comparison of my experiences against the medical descriptions leave me unsure.  Please rest assured that I understand each of is is an individual and there will be a range of experiences.

My GP has been absoluetly wonderful but has never dealt with this condition to date and my Neurologist has also ackowledged little depth.  Several of the efforts we have taken at treatment have been initiated after my bringing information to their attention. While I am confident in their abilities and their efforts, their efforts to treat this most recent cluster have included many drugs and I am getting to feel uncomfortable with it.  I would appreciate any comments and observations.

First, a bit of an intro would seem most polite

I'm a 47 year old, very happily married man in Ottawa, Canada. My wife and I have an amazing 20 year old son and in all ways apart from my health, our lives are stable, pleasant and very fullfilled.  I work in a professional capacity in the social services field and teach part time at our local community college.

About 5 years ago, I began to experience a series of very disruptive symptoms on the left side of my head.  The consistent feature was a headache of varying intensity but also included the following:

• Numbness/Tingling as if I had just been to the dentist
• Weeping, bloodshot eye
• My left ear would get very hot
• Sleep disruptions (not always because of a headache)

The first time the symptoms came, my mother and father were both terminally ill.  I was primary caregiver for both of them so my doctor and I attributed much of the issue to stress.  I made a few changes to my work schedule, added some caregiver supports and made an effort to get to the gym regularly and the symptoms abated after a month or so.

The symptoms returned around a year later (both my parents had died a few months apart from each other by then) and I visited the doctor again.  We started looking into a variety of issues including MS, tumours, and Transient Ischemic Attacks (mini-strokes). 

The doctor was getting rather worried and had me off work for a few weeks while we investigated.  All results were negative after usual testing by cardiology, neurology and included various "machines" including a cat scan and MRI (Good news!  I could finally give my teen scientific proof I actually had a brain!!)   

Surprise!  The symptoms went away.   About a year and half later, guess what?  Again, a week or two off work and POOF, I'm better.  Till last fall that is when I got hit again.  In November, the Neurologist conducted a complete review of all we had done and made a diagnosis of CH.  That run lasted about 3 weeks.

I was put on daily Verapamil (360Mg daily), and given a trial of Maxalt (20mg daily) with a backup of indomethacin (25mg up to 3 times daily).  Finally, he also prescribed Oxygen at 6 l for 10 minutes.  By the time, the oxygen came and I started the Verapamil, all symptoms left

On August 4th of this year, my supervisor came by my desk to ask me about a file and just as she began to speak, she stopped and asked me if I was okay.  I had been feeling a bit odd and my left eye had started to itch and water the day before but I hadn't really paid attention 

Within minutes, I had a splitting headache and barely made it home.  I've not been at work since.  I have never had my life taken from me the way I have the last 2 months.  It's been a hell of a ride physically and emotionally as I know you are all familiar with.  I DO NOT LIKE the feeling of being incompetent...

Here's where I would appreciate your thoughts and feedback.

My experience with the headaches does not seem to match what is described by many of you.  I seem to have 2-3 bad days with them where I have Kip 5-7 events probably 3-5 times daily.  The rest of those bad days I have a CONSTANT level 4 or so that just depletes me.  The bloodshot, droopy weepy eyes are usually present.   I then seem to go 4-5 days with just the other "buzzing, burning" issues I relate above.

The doctors have tried me on Verpamil, Relpax, Indomethacin, Fiornal (sp?), Toprimax and based on my suggestion from this board have okayed me to raise the oxygen to 15 (max on my regulator).  There has been no demonstrable success with any apart limited relief from the oxygen when I'm quick enough.

Questions:
Does this pattern look at all familiar to anyone?
Are the numbness, buzzing, hot ear symptoms what many of you refer to as "shadowing"?
Does my "kip" range fit?  Seems to be far less than both the literature and most of your descriptions

Any and all other thoughts would be appreciated

Gary

Gary,

What caught my attention is your comment about O2 providing limited relief if you catch it fast enough. I'm not qualified to say this, but I do not recall O2 having any real effect on other types of headaches.

Using at O2 at 15 lpm also gave me very limited relief. But breathing pure oxygen at a rate high enough to forcefully hyper ventilate is my silver bullet.

When I jumped to 25 lpm and higher, I learned to kill virtually every attack in 3-6 minutes flat. I sometimes breathe at a lower rate for another couple of  minutes - and then it's back to work! It's not a cure, but it sure as heck puts me back in commission fast.

It is critical to stay ahead of the curve. For me, it works stunningly well IF I jump on the O2 at the first hint. I have tanks at home, in my car and at work.

I'm certainly not saying that it will work for you, but it's such a simple thing to test and it could possibly change your life as it did mine.

Marc

Gary,

Welcome to CH.com, sorry you needed to find us but glad you did.

If you haven't read the "oxygen info" at the left side of this screen please do. Marc has given you some good info too.

The type of mask used with the O2 is very important. It must be a NON-REBREATHER (with a bag). The rebreather (without a bag) and the nasal canula are all but useless for CH. We need 100% pure O2.

Your Doctor seems to at least have a clue, but most don't have the knowledge or the "patients" to treat CH well. Educating ourselves is the best way to be sure of getting the best treatments.

Best of luck, Don

Gary,

What Chuck and Marc said...

I've used O2 since way back when at 8lpm and it "gave me something to do". Back in 2008 in Dallas I got hit and Chuck slapped his O2 "magic" mask on me with a high flow rate of O2 (about 40-60lpm) and it was like something magic hit me. The HA was gone in about 3 minutes and I was NORMAL again. You can bet I took one of those babies home with me and it's one of my most valuable possessions today.

The mask and the flow rate are IMPORTANT. Read all the info on O2 and talk to your doc about it. About 70% of us swear by O2 for a reason.

Wishing you PF time soon.

Hugs BD

I appreciate all the wonderful replies and apologize for the delay in acknowledging them.  I am still having an unpredictable time with this cycle and as expressed by so many other postings here on the boards, the emotional toll is difficult to manage.

The bad news first.  A week or so ago, I was thinking this cycle was coming to a close after nearly 10 weeks.  It had been about a week since the last bad headache and what I call the "buzzing and burning" seemed to be diminishing.  Not to be I'm afraid.  Last Sunday as my son and I were about to prepare dinner, someone hit the switch and the next 3-4 days was back to the madness. 

Interestingly enough, I had a follow up with the GP on Tuesday and just about 5 minutes before she entered the exam room where my wife and I were waiting for her, I had an attack at about a Kip 7 level.  She's never seen me during an attack and you could tell it was quite unnerving for her. 

The good news is that I have been able to connect with a new neurologist here in Ottawa who has had some experience with CH.  As a silly aside, since he's a new Neurologist to me, would that make him a NewNeu?!   

Seeing someone with experience with this condition has offered some encouragement to my wife and I.  My GP has openly acknowledged having no experience at all with CH and after doing a lot of my own research, my sense is that the first Neurologist has little if any either.   The last few weeks has left me with the impression that there was a huge amount of guesswork involved in medication choices and worse, my wife and I just confirmed our suspicion that there were communication issues between the two doctors.  As a result, I unnecessarily ended up on a real "soup" of meds for a couple of weeks.

Because of my difficulties understanding all that was going on due to the pain and sleep deprivation, I couldn't manage the information as well as I would have normally.  My GP was under the impression that the first Neuro wanted me to stay on two meds (Maxalt and Indomethacin) when in fact he had actually only used those as trial meds early on.   So, at one point, we were playing about with Maxalt, Indomethacin, and Relpax on the same day.  The Neuro initially thought I was concerned for no reason when I told him I didn't like all the meds I was taking.  When I reviewed them with him, he paid a bit more attention 

So, I came across the name of a Neuro in Ottawa who has treated CH and asked my GP for a referral.  While he could not take new patients, he provided another name and I was able to get an appointment last Friday.  Nice fellow who complimented me on a lot of the information I had been abe to put together and effectively confirmed that we have been shooting somewhat blindly the last while.  At the same time, I greatly respected his professionalism in how he showed respect to my GP and the other Neuro by commenting on how unusual and hard to treat CH is.

So, where are we now?  The current treatment efforts are as follows:

Verapamil: increased to 420 pending ECG (like that he is monitoring the potential side effects)
Topiramate: 100 potentially increasing pending monitoring of Verapamil change
Oxygen:  Max regulators with our supplier go to 15 lpm.  Neuro is working with them to work out a solution with two tanks/regulators and a "Y" connector.

As for work, still off. Our Human Resources folks have provided me with documents to apply for long term disability as I have only 5-6 weeks sick leave left.  Given how long this cycle has lasted, I'm a bit worried about whether or not it will break in time for me to maintain a regular income.  Having been fully independent since 17, that's a heck of a kick in the ego (typical proud male I suppose), so the papers are sitting on the desk for the next day or two while I pray about the whole issue and rest.

I have a few questions but am tuckered out and need to go get some groceries.  Will connect again.  Please know of my appreciation that there are folks watching and waiting to drop a word of encouragement when needed.  As I get to understand the routines and people around here, I will make an effort to be supportive in return.

G