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        New Message Board Archives >> Medications, Treatments, Therapies 2003 >> Just Diagnosed Lots of questions
        
(Message started by: MJP38 on Mar 18^th, 2003, 4:51pm)

Title: Just Diagnosed Lots of questions
Post by MJP38 on Mar 18^th, 2003, 4:51pm

First of all let me say I am sorry to all of you suffering thru these headaches. I had my 1st attack 2 weeks ago today and after 4 er visits a botched spinal tap, and lots of dilantin in the hospital I now know the problem as Cluster Headaches. I need help to the following if you can help.

1. How long will this attack last I hear 3 to 16 weeks I am going into my 3rd week.

2. when the headaches happen (mine typically start at 2:00am and occur every 2.5 hours) I inject Imitrex get reliefin 15 minutes then fall asleep til the next bout. Can i do anything those 15 minutes to help myself The pain is like nothing any human should suffer and I am afraid of the toll it takes on the rest of my body. Will these headaches and the pain associated cause other physical problems in the long run?

3. My work is suffering terribly between the 5:00am trips to the ER I have been sleeping mostly during the day How do you get back to a routine of sleep at night work at day? Do alot of people take sleeping sedatives to sleep at night? I have always been a late-nighter bed between 12-1 up at 7 but lately I cant get to sleep at all just waiting for the next headache.

4. The last thing for know is the mental state. I feel like I am letting alot of people down. My family, clients, etc I have alot of responsibility in my work and these Clusters have made me feel totally irresponsible which is driving me as crazy as the headaches themselves.

Thanks for any response

Michael

Title: Re: Just Diagnosed Lots of questions
Post by amber on Mar 18^th, 2003, 5:07pm

Hey Michael, welcome aboard, albeit under shitty circumstances.

How long will they last? No one knows. This is your first attack, so know one can tell if you are an episodic sufferer (which is someone who suffers an attack that lasts for a couple of months to under a year) or whether you are a "chronic", which means the likelyhood of you getting more than a few days break for years will be minimal. According to statistics, you will be episodic, meaning that your cluster will last under a year. How long for sure, no one can say.

Ppl with clusters do just about anything to get through the time until the ha passes. I have been on topamax lately, which is a drug that has fucked up my "inner clock" so my ha's have been coming day and night, but they are not going above at 8, so the most I do is punch things, swear a lot, cry, scream a bit, fidget a lot, make sure not to stay still, and check my e-mail. I don't have the horner's syndrome so I'm lucky in that sense that I can do that. Horner's is the syndrome that makes the one eye droop and water and get all red. Because I don't get that, when I get a headache, I read up on the internet on how to fix headaches, I write to others who have them, who listen, and I just vent away. It's really therapeutic until it passes. My family is good that way too.

As far as fatigue..*Surprise*..welcome to the world of ha's. I know people around here probably don't like the word disability, but I think clusters should be labelled as one if they aren't already. Migraines are for heaven's sake. Fatigue is a major battle that we all face, and sleep is a problem during cycle because a: we're tired and b: sleep is when attacks tend to come for many. You will get bitchy, and you will become a "Different person" living under these circumstances, but you can either make the best of it or you can not, it's really a personal decision.

Feeling crazy. That's a lot to do with the sleep and the pain. I'm in cycle right now and a big part of my problem has been my short term memory. And my spelling skills. I used to have both ;) I'll get them back when I'm out of cycle, but until then, compensations have to be made.

What you are feeling right now is totally normal. It also sucks. However, you've found a good resource regarding treatments and medications and with any luck you'll be able to find something that works for you.

My advice would be to find a neuro that can recommend a preventative treatment for you that will hopefully help get rid of your attacks.

Hope that helped answer some of your questions...feel free to ask away!
Amber

Title: Re: Just Diagnosed Lots of questions
Post by cbolony on Mar 18^th, 2003, 5:23pm

First of all look at the meds on the left side of the board then the imitrex tip that we all use then the kip scale to see the level of your pain then read read read.I get 3-4 cycle a year each cycle lasting 6-8 weeks.The first 4 weeks 3-4 CH a day some times more every one is 7-9 kip sometimes 10 real mother fuckers.Sleep forgetaboutit.I take verapamil 480mg aday and a lot of imitrex injections and 02 for the low kips.Mjp38 just ask questions there are a lot of great people here that will help you out.You came to the right place and i hope your cycle ends and you are PF

Title: Re: Just Diagnosed Lots of questions
Post by CJohnson on Mar 18^th, 2003, 5:30pm

I am very new to this board and have been episodic for 10 years. You will find (as I have) that you can have virtually all of your questions answered by reading through the plethora of info this site provides. You will also find that the people here can relate to your problem as no others possibly could. Reading through old posts will prove particularly useful.
I will do my best to address your points. Keep in mind, however, that I am far from expert in this matter.

1. If you are episodic, those figures are accurate. Some folk are chronic. They never go away.

2. Many find relief from exercising vigorously as soon as the first signs of attack come on. Running is my personal favorite. Although I recently sprained my ankle (While ruinning off a headache) and cannot run. Push ups, chin ups, and rapid deep knee bends are the techniques I currently employ, but running really works better (for me). There is no way I could deal by just sitting or pacing. Trouble is everybody responds differently to these things. Breathing pure oxygen seems to be the most wideheld method of dealing.

3. My neurologist put me on Amerge citing its long lasting effects. Since getting it 9 days ago I have had 6 totally pain free nights, and 3 nights when I awoke @ 5am with a headache coming. A lot better than the sleepless pain-filled 2 weeks prior when my only weapon was Maxalt and vigorous exercise.
I had vicodin for my sprained ankle, but MY (again, everyone seems to respond differently to different things) experience is that those types of pain-killers/sedatives are ineffectual. Like trying to stop a charging bull by throwing a tennis ball.

4. Don't be. These things are serious business. I have absolutely no qualms about taking a day off during my cycle. Anyone who knows what these things are will understand.

I hope this can tide you over until some of the real experts get a chance to respond. Good luck.

One final note. Seek Jonny for he is wise and powerful in the ways of .. ah forget it.

Title: Re: Just Diagnosed Lots of questions
Post by Bob P on Mar 18^th, 2003, 5:34pm

Michael,

Get oxygen! Slap on the O2 mask even before you take the imitrex. The O2 will hold that puppy down to a level 3 or 4 while you're waiting for the trex to kick in.

My shortest cluster was 4 weeks, longest 15 weeks (been at this for 32 years).

May want to try taking some good old, knock you out, dramamine before you go to bed. Don't get the non-drowsie type. Get the old stuff that put you sleep. Some people actually skip the nightly headache (presumably by not going into REM sleep).

Work - clusters are pretty much all consuming. They take away your family, sleep, work, social life, etc. Just work on getting through this cluster. You may ask the doc about a Medrol Dosepak. It's prednisone, which has side effects, but it will usually get you 2 or 3 nights sleep and headache free days so you can catch up. The attacks usually return as you taper off the pred. but the break is nice.

One question. How old are you?

Title: Re: Just Diagnosed Lots of questions
Post by Bonniegirl on Apr 23^rd, 2003, 11:34am

I am so sorry to hear what a hard time you're having. :'( I haven't been here long, but I can tell you , you are in the right place. Some of the advice that was helpful to me was to use ice(get a good gel pak or use corn or peas) and also to get fresh air,even breathe the A/C air if you need to. I'm not sure why that helps, but it helps me. Also, if you get alot of attacks during the nite, try sleeping on a bunch of pillows or a recliner. I know for me, I was actually afraid to go to sleep, for fear of waking up like that. Then, I got on the board and posted. Dude, people reached out to me like you wouldn't believe. There's alot of wisdom here(and smartass remarks ;))so take advantage, you'll learn alot. I'm pretty new myself, and I'm still learning myself, but I do know that you have found people who really DO understand. Hang in there. I hope you get relief soon. :-*-Bonniegirl PFDAN's for us all!

Title: Re: Just Diagnosed Lots of questions
Post by Mark C on Apr 23^rd, 2003, 5:48pm

Welcome Michael,
There is much to learn, I will attach a favorite link to get you started. Get thee to a decent Neurologist with some CH experience. You do not have to suffer ALL the time. Good Luck.

General CH Information (http://www.clusterheadaches.org/library/general/index.htm)

PFDAN's
Mark

Title: Re: Just Diagnosed Lots of questions
Post by Eldon on Apr 29^th, 2003, 3:33pm

Hello Michael
Very sorry to hear that you have joined the terrible-terrible world of CH's. I have had CH's for 18 yrs. 1st 10 years eposodic and then chronic. Over the years I have tried about everything. Beta-Blockers, Litium, DHE etc. all worked well for a period of time and then quit. CH had been always on left side and finally got to the point where I had to have demoral daily (& sometimes twice). I had radio frequency trigeminal surgery on the left side. I went headache free for 1 yr and they started on the right side.
About 3 yrs ago my neurologist started precribing Stadol Nasal Spray. If I catch the CH in the first 2-3 minutes the Stadol will abort it EVERY time. Has never failed. I have been to ER twice in that time only because I was dumb enough to go out of town with a bottle of Stadol close to empty.
I DO NOT recommend Stadol N.S. until after trying as many other medications theraputically as Neurologist feels necessary. However, you might consider asking Dr. about having a bottle on hand as it could save a trip to the E.R. and that long period of time to get treament.
Wishing you the best Eldon

Title: Re: Just Diagnosed Lots of questions
Post by Karla on Apr 29^th, 2003, 7:05pm

Depression is something I think many of us suffer from with the CH. CH affects us and disrupts our life and lifestyle in many different ways. You may feel ok one day and suicidal the next day. The affliction can make you mad. I suggest that you talk to your dr if it gets to be daily depression and see about going on an antidepressent. It has helped me in so many ways. I am currently on disability for depression caused by my ch. You may consider this. Only you know how bad it is or isn't.

Title: Re: Just Diagnosed Lots of questions
Post by Wendy the Brit on Apr 29^th, 2003, 7:12pm

Michael

Just welcome, sorry you have to be here, but it's the best place in the world to be when you're in trouble

Wendy

Title: Re: Just Diagnosed Lots of questions
Post by Roxy on Apr 29^th, 2003, 8:12pm

Looks like everyone has already given you good advice. The only thing I would like to repeat, is to emphasize the 02. I has no side effects and is the least expensive of all the abortive meds you can find. Here is a link which will tell you everything you need to know about 02. It was developed by some great people here on the board.

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

Read up, and then talk to your doctor.

Good luck,
Tracey

Title: Re: Just Diagnosed Lots of questions
Post by Rich C on May 3^rd, 2003, 10:36am

I've been at this 23 years. Found this board while looking for a new doc. o2 is great, but I had to get to it within 2-3 minutes or it was useless (although it's a great hangover cure). All I ever been treated with was narcotics, the best of which was Stadol. My neuro has me on preventatives year round, then jacks them up when a cycle starts. He also hits me with prednisone at the first attack & things start to improve right away.

As far as work goes, been there done that. I'm a CPA who generally starts a cycle mid March - mid April right when tax season was flying. Do to the trouble that the CH's caused, I just opened my own CPA business out of my home. I work solo & just lock the doors when I can't work. If the client don't understand, fuck 'em. Your own health & sanity should come first.

Good luck & hang in there.