Cluster headaches

So here we go: I have had cluster headaches since I was 11 years old. I have been on every medication (really almost every medication) to try to prevent them, abort them, or just cloud my senses enough that I don't want to end my life.

My current girlfriend whom I am living with has just experienced one of my sequences. They tend to come 2x or more a year; last for 2 months, and then they go back to hell (but then the migraines return; but I'd rather a migraine that just needs a replax or injection and some pain medication any day).

I was peaking on a 6; a warning sign to be. Get your bag ready you're going to the ER. She drove me to the ER where I was peaking at 8. Apparently I tore apart a seat in the waiting area with my nails and managed to harm myself too.

For the first time I began to lose vision in my cluster eye, swollen. My nose would not stop dripping; like a faucet. Even though I was using Nasonex, and Afrin.

Enter the Angels:

They took me back to a special "red" room with out lighting on. Hooked my up to O2 at 15Lpm, pushed Zofran and electrolytes into my vein port.

The doctor comes in. He asks, "What do you want; what helps you"?. At this point I can not communicate. My girlfriend hands over my list of medications with a note for no hydromorphone. He looks at me and states that they are going to push 250mcg of fentanyl in twice. I say, "OK; whatever you think".

I am on daily high doses of opiates for other chronic pain issues so needless to say I can handle up to 500mcg of fentanyl no problem.

They work in the dark. Using head mounted flashlights to get the port in, and to administer the medication.

3 hours later I am down to a 2! Bittersweet. My girlfriend is excited, "See the pain went away." I don't want to bring her down; I know that this sequence is going to be the worst yet. She drives me home. It is now 5am, entered the ER at 10pm last night.

Welcome dexamethasone at 24mg per day. Steroids make me manic. I cannot sit, rest, relax, or think. It is a quick taper from the ER visit. 10 days, I can handle that.

After 15 days I develop Cushing's syndrome. Sweating 10 liters of water a day. Shivering even though I am hot. Lots of more fun stuff. I haven't been able to eat in 15 days. I drink protein power.

Emergency: hypertensive crisis and adrenal failure. I contact my pharmacist (it's like Cheers at the pharmacy). It is Sunday; I am not going to the E.R., my girlfriend cannot lose more work. He -writes- for an emergency supply of Decadon. My doctor follows up with me the next day. He consulted a few specialists (in this state it takes over 6 months to see a specialist). Decadon for 2 months; slow taper. This is going to be hell.

I feel like I am dying. Less than 3 hours of sleep per night. Pain always at a 3; peaking to an 8. I cannot enjoy anything I used to, cooking, listening to music, painting, reading. I am in bed. I stare at our fish tank.

At this point I am getting to the edge with mania. Contact my PCP; obtain Valium. He states that he is ordering O2 for me. O2? Really? Let the fight with the insurance ensues. 1 week later an Angel appears. He is from my D.M.E. provider. He supplies me with 2x M tanks, 4x D tanks, non-re-breather masks, 15+ Liters per minute taps.

I try the O2 the moment I start to feel the attack.  15 minutes later it is gone!  It's a freaking miracle. 

I sit and realize I have not been at a pain level of 1 in over 4 months.  I begin to cry.  Sobbing like a death occurred.  The death of the cluster pains.

Thank you for all of the information your site has provided.

Welcome to the board, I'm glad you stuck your head in! I hesitate to give you any advice, as you have such complicated medical issues, I'm way over MY head here! ;)

I'm glad you have discovered the joys of oxygen. Oxygen has all but eliminated my use of any other abortives. If oxygen starts to lose its effectiveness, look into increasing your flow rate. 15 LPM used to be what we advised people to use for CH. We have since discovered that many people need much higher flow rates, 25-45 LPM. People for whom oxygen stopped working, or didn't work at all at 15 LPM, are finidng fast relief at higher flow rates. Keep an eye on E-Bay, you can nab the higher flow regulators pretty cheaply, most doctors still balk at the higher flow rates.

Hoping the oxygen keeps working for you, it's been a real game changer for so many.

Joe

Welcome to the board.
So glad you got to the O2... it is a life saver.
Read, read and ask questions, we are all here for you.