Hi, my name is Jamie and I'm in Oklahoma City. I have had Clusters and Migraines since September 2003. They started immediately following my twin brothers passing. Needless to say, they were written off as depression induced tension headaches. Until 2 years ago. I had never heard of Clusters until a general medicine dr mentioned it. He was the first to put me on Topamax. But not once did anyone refer me to a dr or request any imaging. Just, try this...fail, try this...fail...
Until a few days ago, I had never had one during the day. They were in the Spring and Fall, onset during REM sleep, lasting 6-8 weeks, then disappearing as fast as they began. Like clock work, always the same. Some periods worse than others, but predictable for the most part.
I had my first day light cluster followed by a migraine, 7/26 at 8pm. The cluster lasted 2 hours and the migraine another 1 1/2 hours. I've always considered myself blessed, though sleep deprived, to be able to continue my normal routine during the day. And now, I don't know what I'll do. Since Thursday, I've had 3 more. 2 of which were during the day, including this morning.
I was treated with Lithium and Imitrex in 03, which did nothing for me. Over the years, I've been given everything you can name. Midrin, Topomax, Verapimel, Imitrex, Zomig, Xanex, Phenergan, Compazine....I could go on and on. Some meds would work once, maybe twice, then would never again. Which is exactly whats happened again. I was given Zomig, which worked better then most but even with insurance, I can't afford them. My insurance allows 4 per 15 days. 4 lasts me a week (if I'm lucky). Then Imitrex, worked twice and stopped. Now Maxalt. Worked twice then stopped. I requested my dr send me to a Neuro and have an MRI done but he insisted on seeing me again, 6 weeks for the next appt, before referring me. So, I transfered docs. My MRI is today and I see the nuero next Friday.
I'm freaking out. I have a husband, 3 girls (7, 13 and 16), a job and a life. How do people deal with that while these are happening during the day? I can't lose my job and my kids need me....

Jamie: Really has the taste of a complex situation wich calls out for a headache specialist. Your fomer GP was stretching too far--but, sadly, even many neurologists received very little training/experience in complex headache disorders. So, advise questioning your new man closely about his experience and training.

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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.


2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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It's not terribly common, but acknowledge in the medical literature, for folks to have both disorders or combinations of symptoms from each. While there is some important sharing of treatments between M & Cl, it does take a skilled hand to blend an effective treatment.

As you have surely discovered, getting thru this stuff takes patience and persistence, so do your best to avoid the panic reactions--keeping in your mind that you are doing taking responsible steps to gain control. Bite your tongue--hard--when you're tempted to forecast the future!

But, again, first step is to find a skilled doc.

Thank you so much for the suggestions. I've found it very difficult to find a dr who will sit down long enough for me to explain the symptoms. This new PCP did, however, even correct me when I called it a cluster migraine. He stated, "Although, you have both. What you have is not a cluster migraine and the only similarity is they are both head pain. Clusters are much worse and harder to get control of. We will have an easier chance at controlling the migraine before the clusters." I almost fell off the table. haha He actually heard what I was saying.

He called me in a lidocaine rx today. Of course, by the time I knew it was called in, the pharmacy was closing. I have read a few studies/reviews on this. What do you know about it and does it really help?

Welcome Jamie,

    Sorry you have to be here, but glad you found the place. There are some wonderful people here with a ton of knowledge to share.

    If you haven't already, head over to the "Medications, Treatments, Therapies" section of the board and read the thread "123 Days Pain Free and I Think I Know Why". It's a Vitamin D3 regimen that's been helping quite a number of us. All over the counter and inexpensive. It's a long read, but worth the time.

Best to you. Keep reading here, share your experiences, and ask questions.

-dvb

Hey Jamie,

Welcome to CH.com.  You've come to the right place.  We've a few double-headers around here who also suffer from both CH and migraines...  some even experience them heal and toe like you...  so you're not alone...

The lidocaine drip, as you've likely found out from your reading, has mixed results when it comes to effectiveness in stopping or blocking a CH...  The biggest problem is hanging nearly upside down to get the lidocaine drip to land on your sphenopalatine ganglion at the back of your nasal cavity.

It's that little thing you've never seen... but you've likely felt it start to sting slightly in the back of your nasal cavity just before you sneeze.

It's the only nerve ganglion located outside the brain cavity of your skull.  It's also connected directly to a branch of the trigeminal nerve and it's the trigeminal nerves that ignite the pain of a cluster headache.

The thinking behind using lidocaine to block the sphenopalatine ganglion is the block can spread back up the link to the trigeminal ganglion and hopefully stop a cluster headache.

In theory it sounds plausible, but in reality... it's not all that effective done at home...

I tried it for nearly a week on every CH...  All I managed to do was put my nose and olfactory nerve to sleep to the point I couldn't smell anything or feel my nose run...  It didn't stop or block my CH...

You've far better off using oxygen therapy at flow rates that support hyperventilation to abort your CH...  and migraines...

Yes, I know there have been several RCTs assessing the effectiveness of oxygen therapy as an abortive for migraine and all of them concluded that oxygen therapy was ineffective.

I also know that these RCTs used an oxygen flow rate of 7-9 liters/minute...  An oxygen flow rate that low is only partially effective as an abortive for CH and clearly ineffective for migraines.

What does work to abort both CH and migraine is oxygen therapy at flow rates that support hyperventilation...  25 to 40 liters/minute.

I know that may sound spooky, but as a Navy fighter pilot with over 3,000 hours in jet aircraft and breathing 100% oxygen from takeoff to landing on every flight... It's no biggie... 

I never passed out from sucking oxygen that long and I could suck it down at flow rates greater than 40 liters/minute during air combat maneuvering where we pulled in excess of 6 to 7 G several times during engagements lasting up to five minutes...  That's a tough physical workout that leaves you panting like a big dog,,,

Even after all that, I always brought the jets back in one piece for a safe landing aboard ship...  Well... there may have been an infrequent hole or two from enemy ground fire or a few popped rivets from too many Gs... but the jets were always in one piece.

I also used this method of oxygen therapy for nearly five years several times a day as it was my only method of controlling my CH after I turned chronic...  I'm still here at 67 and ornery as ever...

The bottom line is this method of oxygen therapy is very safe...  Even our astronauts breathe 100% oxygen during suited operations...  None of them have ever passed out and drifted off the Space Shuttle, ISS or Hubble from breathing too much oxygen and neither will you.

The most recent news is both of these headache disorders appear to be related to a vitamin D3 deficiency and taking ≥10,000 IU/day vitamin D3 is proving to be an effective preventative for both types of headaches.

The following link will take you to the most recent posts about the anti-inflammatory regimen.

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

When you get to the bottom of each page, just click on the preceding page number at the lower left to work your way back in time.  You'll find answers to most of the frequently asked questions as you brows back through this thread.

Take care and please keep us posted.

V/R, Batch

Jamie, we usually recommend pursuing with your doctor a line of treatment that has worked for the vast majority of us:

1. Find a good headache specialist
2. Start a prednisone taper (starting around 80mg/day)
3. Start a preventative working up to a high enough dose to be effective in treating CHs, like 240mg/day verapamil increasing as directed up to 960mg/day.
4. Get an effective oxygen setup
5. Get effective abortives, like imitrex injectables-pills are too slow-or Migranal nasal spray
6. Keep a log or journal of your attacks, and learn to use the KIP scale at left

It's a long list, but it returns to you the power needed to manage the beast. Good luck and God bless. lance

Jamie, I'm one of those "heal to toe" cluster + migraine folks Batch mentioned. Yay!  ::) My usual pattern is CH at 3 am, migraine triggered by storms or pressure when they occur, or even triggered by a particularly nasty CH. Oxygen usually works on the clusters, but not on the migraines. Imitrex continues to work on both, but makes me sick from the stomach on down. I had success with Topamax in the past, but had the same problem plus weight loss. It's the nature of both disorders to have to try many, many treatments at multiple doses and for long stretches of time. (sigh)

You may also want to check out clusterbusters.com