first, thank you all so very much for your time and effort in putting this site together.  truly amazing stuff. thank you.

i am a 34yr old male from ft. wayne, IN

61 days ago i had a headache.  but more intense than anything i have ever experienced.
im pretty sure you guys know the rest of the story.  they didnt quit.  then 3-4 a day.  then more.  4 doctors, a pharmacy in my kitchen, and a neurosurgeon later i got referred to the cleveland clinic.  this past friday i saw dr. stewart tepper and the man is my hero.... well all of you folks are my heroes as well

it took him all of about 5 minutes to add 2 + 2 and also discover my horners.  i was relieved to finally have answers.  for those of you that have suffered the average 6.6 years or whatever it is before being diagnosed my heart sincerely goes out to you.  you have more inner strength than i do for certain.

anyways.... oxygen is better than sliced bread!!
i like air.

dr. tepper prescribed me to 160mg of verapamil 3x daily and also 500mg of depakote 2x/day.

i have the sumatriptan injection kit and have had to use it once thus far.  it definitely worked for me, but left me feeling REAL BAD.  luckily i was able to sleep immediately after the injection.

anyways........ back to the oxygen thing.  who would have known? i sure didn't. 

i feel SO fortunate for the first time in the last 61 days.  not only to have found all of you, put to have found ways to put the demon back in its cage rather than letting it wander back in on its own time.

i have a wonderful wife who sits outside the bathroom door and suffers with me.  my horners creates a SUPER sensitivity to light so i have to do my dance in a dark bathroom..... towel under the door to block that little crack and all.... im sure some of you know the drill.

i am fortunate enough to have a medical supply store less than 2 miles away that will even deliver my o2 for me if needed.

truly.... in the midst of the worst experience of my life.... i feel blessed today.  now ask me again in 20 minutes how i feel though ...   

glad to be here!!

Quote:



You got oxygen and Imitrex for a backup, keep them handy for awhile 

Verapamil at 480mg/day should, in about another week, begin to decrease the number of hits per day, its a preventative.  Keep in touch with the doc about this to make sure it works for you.  Some need more, some need less. 

Depakote I'm unfamiliar with, but it just may be that the verapamil could work by itself.  By starting both together, one may be effective and the other not, and it would hard to tell which is useful, but no use taking more drugs than you need.  These are also drugs that need to be tapered off of slowly if not required with your doctor's say so.

Sensitivity to light isn't unheard of especially because the affected eye becomes so sore all by itself, but for the most part, it isn't part of the CH syndrome. I don't think it is, anyway. I've noticed that 3-4 hits in a row, over a short period of time, will actually kick in a migraine with all of its glorious symptoms including light and sound sensitivity. By the way, glad you're finding relief! And try the energy drink kicker just before hitting the O2. I use 16oz Monster but others like Red Bull, and some swear by the little shots. We think it's the combo of taurine (1000mg) and caffeine that does the trick, but the volume of liquid and carbonation may be involved. Great news, fight the good fight, and God bless! lance

Headache. 2006 Sep;46(8):1246-54. 


Cluster headache: clinical presentation, lifestyle features, and medical treatment.

Schurks M, Kurth T, de Jesus J, Jonjic M, Rosskopf D, Diener HC.

Background.-Cluster headache (CH) is a rare but severe headache form with a distinct clinical presentation. Misdiagnoses and mismanagement among these patients are high. Objective.-To characterize clinical features and medical treatment in patients with CH. Methods.-We established a cohort of 246 clinic-based and non-clinic-based CH patients. The diagnosis of CH was verified according to International Headache Society (IHS) criteria. We used standardized questionnaires to assess associated factors as well as success or failure of treatments. Results.-The majority (75.6%) was not treated before at our clinic-77.6% were males; 74.8% had episodic CH, 16.7% had chronic CH, in the remaining patients, the periodicity was undetermined because they were newly diagnosed. Cranial autonomic features were present in 98.8%, nausea and vomiting in 27.8%, and PHOTOPHOBIA or PHONOPHOBIA in 61.2% of CH patients. Most (67.9%) reported restlessness during attacks and 23% a typical migrainous aura preceding the attacks. The rate of current smoking was high (65.9%). Half of the patients reported that alcohol (red wine in 70%) triggered CH attacks. Eighty-seven percent reported the use of drugs of first choice (triptans 77.6%, oxygen 71.1%) with sumatriptan subcutaneous injection being the most effective drug for acute therapy (81.2%). The most frequently used preventive medications were verapamil (70.3%) and glucocorticoids (57.7%) with equally high effectiveness. Conclusions.-Apart from the IHS criteria additional features like nausea/vomiting and migrainous aura may guide the diagnosis of CH. A large number of CH patients do not receive adequate treatments. (Headache 2006;46:1246-1254).

PMID: 16942468 [PubMed]

   Max them out as long as there is little out of pocket.

                     Potter

I'm one the 20-30% that get light and sound sensitivity with CH attacks.

Apria was my O2 provider for 10 yrs and they are a good co. They will even set you up with O2 in other States, if needed. If your Insurance covers the O2 at all, it should only take a call to them to see if you can get a large home tank. They may need approval from your Doc.

Be sure to keep the E-tanks too for travel.

Don

Dr. Tepper knows his stuff.  You're fortunate to have landed with him.

You'll have a great experience in Nashville.  Dr. Peter Goadsby will be speaking.  Check him out...you'll be impressed.  Also BobW from Clusterbusters will be presenting on the BOL research....very promising.