Hi, everyone!  I am so glad to have found this site!  I am grateful to have discovered a community of people who understand what I am going through and can offer suggestions and advice that actually helps.

I have been a migraine sufferer for years - only a few a year until I got a spinal injury in an auto accident 8 years ago.  Then, I started getting them all the time - every day.  I was on lots of medications and few of them did anything to help.  Doctors just seemed to think I was being a hypochondriac or that I was a drug seeker.  I was in pain all the time and nobody understood.  My relationship began to suffer.  I was depressed and couldn't work.  I contemplated suicide more times than I care to admit.

Finally, the headaches subsided for three years.  I would get a migraine every few weeks which lasted only lasted a few hours.  Migraines are nasty but they are more like a sprint compared to a marathon - you know the end is near; go somewhere dark and quiet, take your meds and wait it out.  Inconvenient, but for the most part, manageable. It felt like I got my life back. I got married and had a darling little boy.

Then, in 3003, it started again.  At first, I thought it was just a nasty migraine.  It woke me in the middle of the night - pounding, agonizing. It felt like something had exploded inside my head.  I got up and tried my migraine meds and a cold pack.  No help. I couldn't stay still - it was the middle of the night and I was pacing and crying for hours, afraid something truly terrible was happening.  And then it stopped.  Not all the way - I still had a low level (3 on the Kip scale) headache but in comparison with a 10, it wasmanageable.  That was the first night of a eight week cycle.  This became my life.  At the worst point, I was in a meeting with my boss and other coworkers when I lost the ability to communicate properly and to understand what others were saying to me.  The left side of my face was drooping and everyone thought I was having a stroke.  I was rushed to the ER where I was put in the waiting room for seven hours before being seen.  At that point, I was much better.  So, I was admitted for testing, given meds and ultimately diagnosed with complex migraine.  All the while, I was condescended to and treated like I was wasting everyone's time.

In 2006, it started again.  This time, I tried Spinal Decompression Therapy at the recommendation of my chiropractor.  It was intensely painful but ultimately, the headaches stopped.  I had fewer migraines than before the therapy, so I considered it a success.  Now, I realize the cluster cycle ended.  I am appreciative of fewer migraines, though.

Two weeks ago, it all started again.  In the middle of the night, every night, I wake up with extreme pain.  I have aura, light and sound sensitivity, blurred vision, balance problems, drooping eye and mouth on the left side, numbness in my face and three fingers on my left hand and my left hand sometimes just lets go of things that I am holding, my left ear burns and feels full of fluid and my nose is runny on one side.  Since the headaches have so many symptoms in common with complex migraine, it is easy to see why they were misdiagnosed.  The main difference is that the headache lasts for weeks without ever completely going away.  I have a low-level headache with waves of intense pain, generally 5-7 per day. 

Last week, I was prescribed Imitrex, Fioricett, Compazine and a Medrol Dose Pack.  The Medrol helped - no major pain for a few days.  Then, I finished it and all hell broke loose.  Nausea, vomiting, intense pain, vertigo, etc. with no break for nearly 8 hours straight. My doctor recommended I go to the ER because the pain was so bad and the meds were not helping.  I was given oxygen, Toradol injections and Morphine, then sent home.  Great, until the next morning when nothing helps and I am trying to get my son to school and am supposed to be at work.  I am a teambuilding consultant and spend most of my time speaking in front of a group.  Impossible when I am in this state.

I am doing my best to avoid anything that could possibly be a trigger but the headaches (there really must be a more accurate term) keep coming in waves.  When they go, I am exhausted and still hurting - the pain never fully subsides but just goes down to a more manageable level.  I am afraid.  I don't know how long this will go on.  I am afraid the depression will set in again.  I am afraid I won't be able to deal with the next one.  I keep having to cancel plans and cancel work.  People just don't understand.  I am in a leadership position and this behavior makes me look like a flake.  My husband is patient and he tries to understand, but I see the irritation and disappointment in his face when he comes home and the house is a mess and I am in bed and could not go to work.  I just don't know how to deal with this or what to do next.  Suggestions will be greatly appreciated.

Carlyn
caribeth51@yahoo.com

Thanks, Chad, I will.  I have already had some luck with the Red Bull strategy!

Not sure that it is cluster, but I'm not a dr.  I had migraines as a kid, but they have basically gone since it morphed into CH.  It sounds as if possibly you have a combination.

First of all, get rid of the narcotics.  if it is CH they will do nothing by get you hooked.  Been there!  They do NOT touch CH pain.  Second, get Oxygen.  Read the "oxygen info" button on the left.  It MUST be used properly, or it will do no good at all.  Third, go the top of this page and click on the "Letter to collegues and friends".  Print it out and share it with anyone who you have to deal with so they will know what you are dealing with, and know you are not just being a flake. 

I know the feeling of losing sensation on one side.  Mine is always on the right side, and is rather disconcerting.  I've never had any lasting effects from it though, so you don't have to worry about it being a problem if tht is all it is.  It would be good though to be checked for TIA just to be sure.

Wish you the best,

Jerry