Holy cow!  I can't use ANY of the triptans.  I've never had a heart attack, but I imagine it's pretty close.  Imitrex, Zomig, Maxalt... within a few minutes (a few seconds with Imitrex spray) of taking them, my heart starts racing, I start sweating, and my left arm goes numb.  This last for 1-2 hours.

Stadol, on the other hand, seems to work really well.  A very weird side effect -- in the midst of radical pain, I start cracking up like a mental patient.   :o

100mg. of Demerol doesn't even knock me out anymore.

I will be seeing my neurologist on March 22, and I'm anxious to start trying Oxygen therapy.

Get oxygen.  It aborts as quickly as triptans but without the side effects.

Jeannie

Hey GC,

Jeanie took the words right out of my mouth.

She's spot on with her recommendation.  Don't settle for anything less than a flow rate of 15 liters/minute with a non-rebreathing mask.  Open with a bid of 25 liters/minute then say "All In" for added emphasis and double down with "I want the 'Big' M-size home oxygen cylinders too."

Keep a good poker face...

Take care,

V/R, Batch

What they said! ;) Oxygen has all but eliminated my use of the imitrex injectors. Just about as fast, no side effects, and a boatload cheaper too.

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

If you have not already done so, read this link, print the supporting documents out, DEMAND  oxygen. It'll sure change your outlook on the beast!

Joe

Yes, Oxygen! And be sure to get the higher flow rates - makes a BIG difference!
Also try the anti-inflammatory supplements suggested by Batch under the post "123 days pain free and I think I know why."

You guys are wonderful.  I feel like I'm going in with an arsenal of weapons and an army that has my back!

You're not the only one who can't use triptans. I ended up with bad heart palpitations after trying Maxalt, but oxygen just rocks at killing CHs.

O2! Yes! If you still need an abortive try coupling it with an energy drink (Monster, Red Bull, 5 Hr Energy...). And I had success (although many did not) with Migranol. It is dihydroergotamine and may not affect you like triptans. But O2 and energy drinks, and other OTC stuff may do the trick. Let us know. Blessings. lance

Woo Hoo!  Today is a great day!  O2 at 12 LPM has been approved!  Went to my g.p. on Friday and desperately told her that there was no way I could wait for my 3/22 appt. with the neurologist.  Thankfully, she jumped on board, as did insurance.  Hopefully, Stadol will be a thing of the past.

I wish I could say that cluster headaches were the only thing that plagues me, but I've suffered from migraines for years.  This particular cycle of headaches has lasted since the middle of January, and I was online researching a very odd symptom that I'd noticed lately.  I'd described it to my husband as the same sensation you'd have if you put your head underwater in a chlorinated pool and let the water go into your sinuses... but the feeling was from the tops of my ears forward and up over the top of my head.  I know... very weird.   :o

So anyway, I wound up on headaches.com, and I found this:

Hemiplegic migraine is a very rare form of migraine that is considered to be one of the more severe types of migraine. The sufferer may develop some temporary motor paralysis on one side of the body. This may be accompanied by numbness or a pins-and-needles sensation. The neurological symptoms usually leave when the headache appears.

With hemiplegic migraine, there is often a familial occurrence. In about 50% of these families, a chromosome defect may be found on chromosome 19 or on chromosome 1 and involves abnormal calcium channels. A physician should be consulted for this type of headache. You should not take triptans if you have this type of headache.

Well no, this didn't provide the answer I was looking for, but look at my original post in this thread!  On Saturday, I posted this on Facebook:

Have you ever sat on your foot for awhile and it fell asleep? Well, that's what the left side of my face and head feels like -- but I didn't sit on it.

Hell-O-o!   :)  And ready for this?

Every day I tell Billy (my husband) that the left side of my head is hypersensitive right before I get a headache! (I tell him that the ants are crawling.) I actually hadn't made the connection that the feeling goes away once the headache pops out, but sure enough, it does!

Symptoms of hemiplegic migraine include:

· Severe, throbbing pain, often on one side of your head
· A pins-and-needles feeling, often moving from your hand up your arm
· Numbness on one side of your body, which can include your arm, leg, and/or one side of your face*
· Weakness or paralysis on one side of your body
· Loss of balance and coordination
· Visual aura, such as seeing zigzag lines, double vision, or blind spots*
· Language difficulties, such as mixing words or trouble remembering a word
· Slurred speech
· Dizziness or vertigo
· Nausea and vomiting*
· Extreme sensitivity to light, sound, and smell
· Confusion
· Decreased consciousness or coma*

Ho-ly crap. On January 31, I went to Barrow Regional Emergency Room with 9 of these 13 symptoms (the only things I didn't have were the ones with asterisks) . The doctor looked at me for -- literally -- 90 seconds and sent me for a CAT scan. The nurse told me that the CAT scan came back negative and showed me the three things that the doctor had diagnosed me with: a headache, sinusitis, and degenerative joint disease. I came in telling them I had a headache and arthritis. Where they came up with sinusitis, I have no idea. They gave me a shot of 25mg. of Demerol (heck, my own doctor gives me 100mg. of Demerol!) and sent me home. Before leaving, the nurse told me that if my symptoms changed, I should, of course, come back; then she leaned over and whispered, "The doctors change shifts at 7AM."

I am so pissed off at this minute, I could scream. I came in as a poster child for a hemiplegic migraine, and even if he wasn't aware of this particular kind of migraine, there was surely something going on beyond a headache and sinusitis considering I didn't even have a stuffy nose... Even worse -- had I not had insurance, it would have cost me $4,600! That's fair, right? As it is, Aetna had to lay out $716 and we had to pay a $150 copay for this jerk to write me off.

I wonder how many hundreds of thousands -- hundreds of millions! -- of dollars have been spent on misdiagnosing people who are suffering to the point of debilitation.

Luckily, my husband and I own our own company, and I have the flexibility to work when I can.  Many times it's a few hours here and there or odd hours in the middle of the night processing orders.  That's only part of the story, though.

The constant pain over the past two months has been horrific.  Nobody should have to live like that.

The worst part, however, is that my husband and sons (Liam, 9, and Wil, 11) might as well have been living without me.  It doesn't matter that we're all in the same house.  It's all I can do to make it out of the bedroom some days.  I'm letting them down.  I can't wait to start feeling better and having a life again!   :)

It appears that you have not had a good diagnostic work-up and have not been diagnosed at this point.

With complex headache disorders, it's not wise to either Dx yourself or start your own treatment.

Given how close you are to Atlanta, would strongly suggest you seek a headache specialist. The mass of general neurologists have very little education in headache and, in our collective experience, often provide poor care.
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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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Apart from the absence of a clear Dx is the potential for other disorders which mask as Cluster--another reason for a good work-up before you decide what you have.
Look under: Medications,  Treatments,  Therapies › Important Topics >Cluster-LIKE headache
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Using any med/treatment which controls the pain can also be a barrier to determining what is the core problem. It misleads you and the doc.

I actually already read it.

I've been completely worked up, down, sideways, and every other which way over the last several years.  Aside from drilling holes directly into my skull, I'm not sure what else they could do to see inside my head, Bob.   :)

I am fairly confident, however, that not one neurologist that I've seen has put all the pieces together to get a clear picture as to what's going on from my shoulders up.  There is zero doubt that I suffer from migraines as well as cluster headaches (nothing's growing where it shouldn't be -- and that was confirmed as recently as last month).  I believe that over the years, my cluster headaches have been treated as severe migraines, and I've had triptans thrown at me to no avail.  I do believe that through my research this morning, I've found the reason why they haven't worked, as well as the reason why traditional migraine meds haven't worked.

Compared to the treatments given by and from neurologists over the past ten years, I'd say I'm head and shoulders above where they've been in my diagnosis.

I am, of course, giving yet another neurologist a chance to jump in the ring with me next week.  I am always hopeful that people will do the right thing, and I am keeping my fingers crossed that this one may just be the physician I've been looking for all these years.   I'm only 41.  If we can get this under control, I have another half of my life to live pain free.   ;)

oh my goodness - i just read your entry and almost cried at all that you write b/c if rings so true to my experience. i am sitting here with my heart racing and searching just that. been in this hell since oct. 3. the migraine broke last week and i am left w the cluster isolated. the migraine is just as you descirbed - swore i had a stroke. when i took maxalt i was talking gibberish and thought i had gone crazy. eventhough my doc told me to take gabapentin 3xs a day for the cluster... my heart won't stop racing and my breath is super short ... not nice bw the beast ... i'm tapering down on prednisone now (30 day course and am on 1 pill/day now) and the CH are at 10s again... i'm losing it... neuro is scheduled for march 30th and doc won't give me o2 ... i put chilis in my mouth, job in place, slam redbulls... still taking topamax but clearly that's not helping... dn't think i can take more that 2400mg of ibu a day taht i'm already taking... what did you do? at least i don't have the migraine... but the heart racing.short breath is keeping me down now too... could it be the gabipenten? hope you are pain free these days...