Hi all,

My name's Kate. I am new to the for forum, but have been diagnosed as having cluster headaches on the left side for then past 2 1/2 years. I get cycles in the fall and the spring. I occasionally get a rogue cycle if i develop optic neuritis at a different time of year. I have been aware of this forum for some time now, but as my fall cycle is just starting again, I decided to finally join the forum to meet and support others with cluster headaches.

A little about how my clusters started: At the very end of my sophomore year of college I suddenly lost my vision and developed optic neuritis on the left side. After this bout of optic neuritis, my headaches which had always been classic migraines with aura, changed drastically. My migraines used to change sides religiously, could last for days, and usually had an aura. They now were always on the left side, came like clockwork, and were located like someone was stabbing me between my eye and the bridge of my nose. I also developed tearing, but no longer had photo and phonophobia.  I then went up to the Mayo Clinic and saw a headache specialist and because I wasn't familiar with the cyclical nature of my headaches, they were simply diagnosed as status migranosis. This pattern continued, developing optic neuritis 3 times over the course of the 2 1/2 years, and was finally diagnosed as autoimmune optic neuropathy. In the meantime, I had fired two neurologists; one for throwing more pills at me, and another for giving up on me after she had diagnosed cluster headaches. I have finally found a doctor, actively involved in cluster headaches, that some of you may know: Dr. Larry Robbins, right outside of Chicago. He has put me on the right medications and confirmed that there have been other cases of optic neuritis causing cluster headaches.

I would be curious to know if anyone else here attributes the start of their clusters to optic neuritis.

Currently, I take Migranal and IM injections of DHE-45 for my clusters. I have a prescription for high flow rate oxygen, but I have yet to fill it. I have tried many other meds, but this seems to be the best combination so far! 

My latest challenge, now that I have graduated from college, is to be a teacher with these headaches.

Robbins has been high on my list for years.
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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")


HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Welcome Kate,fellow clusterhead.
I am also new here but have already learned soooooo much.Seems like a great bunch of people here,great place to vent to people that understand.Good Luck to you and God Bless.I wish you lots of PF time on me!

Hey Kate,

Welcome aboard.  You've come to the right place.

It sounds like you have most of care and feeding of your cluster headaches in hand, so all I can offer at this point is to have the Rx for home oxygen therapy filled...  You're missing out on the very best and least expensive abortive available that's safe and has no side effects.

Oxygen therapy at 15 liters/minute is also listed by the National Guideline Clearing House standards of care in treatments for cluster headache below as the first acute therapy of choice by the European Federation of Neurological Societies (EFNS).

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If you want to make sure your Rx for oxygen therapy is written properly, check out the following link that provides the "How To" obtain a properly written Rx for oxygen therapy.

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If you go for a fresh Rx, push for a flow rate of 25 liters/minute when you see your neurologist as this flow rate will support hyperventilation with very safe and very fast aborts.   Don't settle for any flow rate less than 15 liters/minute with a non-rebreathing mask.  If your neurologist looks at you like you have two heads when you ask for 25 liters/minute show him or her the downloads from the "How To" link.

If you're having 3 or more attacks a day, order the large M-size oxygen cylinders for home use and a couple E-size for work or local travel.  At 3 cluster headaches a day I keep three of the M-size oxygen cylinders on hand for a month's supply. 

As you can see from the tally sheet stuck to the cylinder on the left, I managed 30 aborts and there was still enough left for one or two more aborts.  The M-size cylinders cost $30 each but my co-pay is only $6 so my out of pocket  cost/abort per cylinder is 20 cents.

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I also have an aluminum M60 that I use for local travel and work away from home.  I also have a trans filler pigtail to re-fill it from the M-size cylinders.

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As you can see from the photo's I use the InGage™ CGA-540 and CGA-870 oxygen regulators from Flotec Inc.  The InGage™ is a very rugged regulator that has selectable flow rates from 0 to 60 liters/minute and a DISS fitting for my oxygen demand valve.  These are great regulators with an internal cylinder pressure gauge and hand tighten knurled knob so no wrench is required to attach it to the oxygen cylinder.

If I want very rapid aborts (and I do all of the time),  I generally start out at a flow rate of 60 liters/minute until I push my system into respiratory alkalosis, then throttle back to 40 liters/minute until I reach the abort. 

If I start early, this usually works out to an abort in 2 to 3 minutes with this method using either the O2PTIMASK™ kit or demand valve.  If the cluster headache wakes me from sleep and already has a head start up the pain scale, the abort can take from 4 to 7 minutes depending on the pain level.  Higher pain levels take a little longer to abort.

I also use either the $27.50 O2PTIMASK™ kit with the 3-liter reservoir bag from the CH.com store tab at the left, or my oxygen demand valve to administer the oxygen.  Both work equally well in generating very fast aborts and each has it's advantage.

Take care,

V/R, Batch

Hi Kate!

Just wondering, but have you been investigated for autoimmune disease?  Recurrent optic neuritis is concerning for some kind of autoimmune syndrome.

Just wondering...

Welcome Kate, do get the 02 prescription filled and give it a shot. Has almost eliminated my imitrex useage. 32 year sufferer and nohting comes close to the effectiveness of it's aborts, with no side effects!

Joe

ThanKs everyone. I definitely will call and get my o2 prescription filled. My prescription says 15 liters per minute, but I'm sure my near will write it for 25 if I find 15 isn'5 enough. The tip on putting it up to 60 liters a minute is great.  I haven't heard that before!

Lettucehead- I have been investigated for then recurrent optic neuritis and it is autoimmune. It's not MS, as is usually the case, but another rare inflammatory condition called autoimmune optic neuropathy, where just the optic nerves are attacked.

I'm glad you got it checked out.
When I first read your post, my thought was 'uh oh...' 

Please keep an eye (haha) on yourself, if you start having other unexplained symptoms, it may be a sign that your autoimmune syndrome has broadened.  You probably already know, but sometimes autoimmune mediated optic neuritis can be a herald to a more complex autoimmune syndrome that may take years to even decades to declare itself...

As an aside, I have an autoimmune disease myself.  I have often wondered if there is a connection between the conditions as it just seems rather astronomical odds that I should win such a biological lottery twice.   ;)

Welcome Kate from a fellow left sider.

Just wanted to say Hi [smiley=wave.gif] and let you know there are awesome people here with loads of excellent information on CH as well as supporting shoulders when needed.

Sending PF Vibes your way!
Ging...

Welcome to CH.com Kate. I also suggest you get the O2 (oxygen), I've been using it for 21 years and it is the one treatment I must have.

I also use DHE-45 IM injections and have used Migranal, they're the same med. Migranal was too slow to abort for me. Please use caution with using both, DHE is recommended at 6ml per week, the shot is 1ml and Migranal is 2ml, and we must count both.

O2 used properly will help limit the use of any other abortives. It is much safer and in most cases as quick as other abortives.

Best of luck,
Don

Lettucehead -I agree with you that there seems to be some relation to autoimmune diseases in some people, like ourselves. I've always felt it had something to do with the inflammatory nature, vasculitis and such. I am aware of the autoimmune disease broadening and I am being watched for lupus because I have many symptoms, but so far no diagnosis because I have a negative ANA.

Skyhawk -I agree with you that migranal doesn't act fast enough. I am somewhat limited, as I can't see bringing a needle to give myself injections when I work in an elementary school. Maybe it'll be different since I'm going to be calling to get that o2 script filled.  :) I'm interested to try the new inhaled type of DHE that my neuro says should be out in the next year and studies are showing it to be as fast, if not faster, than the injection.

Kate wrote on Sep 3^rd, 2010 at 1:38am:

I am somewhat limited, as I can't see bringing a needle to give myself injections when I work in an elementary school. I'm interested to try the new inhaled type of DHE that my neuro says should be out in the next year

For occasional on-the-job use with easy convenience, Immitrex or Zomig have nasal sprays, if they were to be prescribed.  When needed to keep pressing on, the trex n/s has gotten me out of jams with symptoms and accompanying mental lapse only shortly noticeable before recovery was felt to be taking hold.

And as to the injections, I use the stat injector pen. Comes in a cute little case the size of an older Texas calculator. It looks like a fat ball point pen, the needle is hidden. You press it against your skin and push the button. My best injection story was in the middle of mass! I direct a small choir and sit up in front of everyone! Was able to sneak the pen out, load it, and shoot it. Only the 2 choir members sitting next to me were any the wiser! ;)

Joe

Hi Kate good to meet you. I wish it was under different circumstances. I just graduated too and I am going to attempt being a teacher with this condition. Wow I wonder what the class will think if we have a full blown attack during a lecture or something. HaHa Not that funny actually. I used miganal nasal spray one time also. It didn't seem to help me though. Oxygen is the best thing i have found so far. I hope there is something better out there that noones discoverd yet. Hang in there. Verapamil seems to work good as a preventative for me anyway. I also use ice a lot during the attack. I sometimes will get in the shower right away at the onset and switch from very hot to very cold. Seems to take your mind off of it a little. Let me know if I can help in any way. Daniel Walker

Great to meet you Daniel! I can imagine having a full blown attack in class. Usually, other teachers are pretty helpful at watching your room while you go take some medicine (or o2, I would assume) to decrease the headache. Maybe we'll end up with some interesting stories because of our jobs!

I am filling my o2 prescription on Monday after holding on to it for months, and am so excited to have something that will help me and be less toxic!

I haven't used verapamil like you, but have recently stopped taking Topamax. I didn't like the word-finding issues and it didn't seem to be helping me. Maybe I'll ask my doc about verapamil or lithium, but right now I have some other health problems so I'm trying to use the least toxic medications I can get away with while still getting rid of the headaches.

Let me know if I can help you in any way too - from one young clusterhead to another!

That's prbabaly the biggest plus for 02. Doesn't interact negatively with most other health issues and medications, no side effects and you really don't have to monitor how much you use. Praying you have as much success with it as I've had and you can get your life back into full gear again. [smiley=hug.gif]

Joe