Posted by Steve on June 05, 1999 at 05:09:14:
Hello everybody,
I’d like to introduce myself -- my name is Steven Held and I’m a 13-year sufferer of clinically diagnosed cluster headaches.
I found this site about a week ago and strongly desire to be an active participant! I’ve spent alot of time reading your posts and often cried - frequently overcome with emotion as I discovered your immense sense of community, love and understanding toward one-another. I can’t explain why I delayed in posting to the board and chose to remain on the periphery of this wonderful find – but I can assure all of you that you have been a great comfort to me -- even as I was on the outside looking in.
I’m a 38-year old white male. I am a United States citizen residing for the last 15 years in Germany. I spent 13 years on active-duty in the U.S. Air Force – separated from the service, continued to work for 6 years as a civilian for the Army, and am currently self-employed. I’m married with no children (yet! – we do desire to have a child). My wife is German – her name is Roswitha. I’m originally from Wisconsin.
I’m episodic and currently in the midst of an active bout that began 30 April this year. I’ve had previous bouts in the winters of 87/88, 91/92, 94/95. Up until the last bout in 94/95, I would have attacks for approximately 4 weeks and then go into remission for 2-3 ˝ years. That last bout was different – the damn things lasted 10 weeks! It was the worst bout I had ever had in terms of frequency of attacks, length of attacks, and intensity of pain ( I think that the 91/92 bout probably paralleled it – it just didn‘t last as long! ). In addition to the all-to-familiar symptoms during attacks, I have a very pronounced left-side, partial Horner ( that became a permanent feature after the 91/92 bout - leaving me with a droopy-eye even between bouts ) and a left-side deviated septum (severe – I have chronic nasal blockage during times of remission as well as during active bouts and attacks). Needless to say, my attacks have always been left-sided.
Medications I took prior to the last bout ( prescribed by military neurologists ) were 1) preventative – Prednisone and 2) abortive – Ergotamine Inhalers. The Prednisone stopped the suckers dead in their tracks each time within 24 hours. During the last bout in 94 / 95 I was under the care of a German neurologist. At that time I underwent myriad tests to rule out any clinical abnormalities. Treatment consisted of Lithium as a preventative and Ergotamine and Oxygen as responsives. Lithium proved for me to be ineffective in breaking the cycle. Because the doctor was against the introduction of steriods we parted ways. I turned to american military doctors (still an option at that time), got my Prednisone (and this time Sumatriptan as an abortive) prescribed, and again (within 24 hours) stopped the beast dead in its tracks.
Note: Because I’ve read posts asking about Prednisone dosages I’d like to add my last protocol here: 14 day course, 20mg tablets – 4 TABs (80mg) X 5D, then 3 TABs (60mg) X 3D, then 2 TABs (40mg) X 3D, then 1 TAB (20mg) X 3D.
As I indicated, my current bout began 30 April this year. Previous attacks have always come in late fall or early winter. Anyway, they’re back! My greatest fear has been (assuming all German doctors would approach treatment conservatively) that they would return and I would not be able to get steriods (I’m no longer eligible for treatment at U.S. military medical facilities) to break the cycle. I’ve come to regard steriods as a sort of wonder drug and affectionately refer to them as my „cluster busters“.
I returned to the same German neurologist (in response to Roswitha’s gentle nudging – read: near insistance) for treatment. Why? -- 1) because he knows my history and I did not desire to start with Adam & Eve with a new neurologist or have to replay all the tests and 2) because I thought I wouldn‘t know the answer regarding steriods until I asked the question. The doctor deemed steriods to be the best course of action and immediately prescribed Prednisone!
YIPES – they’re not working! First protocol looked like this: 50mg tablets, 75mg x 2 days, 62,5mg x 2 days, 50mg x 2 days, 25mg x 4 days. NOOOOOO – this can’t be!! Second protocol looks like this: (50mg tablets) I went to 100mg for 10 days and reduced to 50mg where I have been now for 5 days.
The attacks did stop almost immediately when I began the 1st protocol but after several days I experienced breakthru headaches that worsened over several days. Got relief again when I went to 100mg but again experienced breakthru headaches. Had one hell of a day when I reduced to 50mg. For the most part I have had nocturnal attacks (3-4 a night, every 2 hours beginning at 02:00 / 02:30) with additional random attacks throughout the day that don’t really fit any pattern. When I reduced to 50mg I experienced 5-6 attacks a day for 2 days, then I went a 48 hour period without any attacks. Then the attacks start again – on again, off again, on again. What is going on here?
I treat acute attacks with Imitrex (here in Germany called Imigran) 20mg Nasal Sray. For the past 9 days I have been able to reduce the number of attacks using the following strategy: the doctor prescribed Imigran suppositories. One at bedtime (midnight) because its slower working and longer lasting will put off headache onset for at least awhile. Instead of waking with an attack at 2:00am / 2:30am I am first awakened at 4:30am or even 5:30am. Before I would have attacks at 2:30, 4:30, 6:30, and 8:30. Several days ago I started with a 2,5mg Naramig (stateside Amerge) tablet at bedtime and have had even better results. I am able to sleep until 7:30am before the onset of a headache and even had one headache free night without the morning wake up! But now the frequency of day-time headache has increased!
My concerns and frustrations are: Why did I get this bout at an odd-time of the year? Why are my attacks less frequent and less intense? The headaches, though bad enough, are nothing like I’ve had during previous bouts.Why is the Prednisone seemingly not working? Why on-again, off-again attacks? Is the Prednisone having some effect but just not busting the cycle?
I’m thinking that the change in pattern of everything could indicate a change from episodic to chronic attacks. Any previously-episodic, now chronic sufferers out there with personal experience to share?
Love all you guys & gals -
Wish everyone a pain-free day!
Steve sends...