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karma
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medicate vs. toughing it out
« on: Aug 6th, 2004, 12:00pm » |
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hi all,
I just discovered this great site after being pf for 2.5 years. This seems to be a pretty regular cycle. Its started again but thankfully less severe than in the past. No 9's yet mostly bearable 6's and 7's
In the past I was trying to kill them with over the counter painkillers until I realized they were making it worse. The pain came on like clock work day and night usually two or three times a day. Real screamers. The knid where the water from your eye and the snot from your nose meet in the area where the ice pick is going through the roof of your mouth.
This time is different. their slow to start and irregular but often except the worst one at 9:30 p.m. on the button. For that one I may take one 2.5 mgr. Zomig and have been able to sleep through the night. I've only tried Maxalt in the past and it realy wasn't much help. Now I use the zomig sparingly because I can tough out most of them and don't want to get the head to accustomed to the medication. I had no idea that this thing could get worse in some cases. For those that have it worse than me hang tough I feel your pain. Just focus on that momemt when it suddenly is gone for awhile. It will come it always does.
My question is does medication help in the long run or are we making it worse? I know its hard not to grasp onto ANYTHING that may help and I had no idea that there was so much out there to help control this thing but from what i've read the last couple days it seems that the ones that are the worst off are the ones taking the most medication.
I know its the chicken and egg question but is it possible that we are making things worse by overmedicating?
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IndianaJohn
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Re: medicate vs. toughing it out
« Reply #1 on: Aug 6th, 2004, 1:18pm » |
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Hi Karma, so sorry that you have to be here.
You may be onto something. I know first hand that taking my preventative meds while out of cycle rendered them useless. The attitude that I think I will take into the future is to ween completely off my preventative meds out of cycle, and as soon as I think a cycle is beginning, to start back up.
Like you I usually try to tough out the milder ones and use Imitrex Nasal sprays on the ones that get severe.
PFDAN!
John
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don
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Re: medicate vs. toughing it out
« Reply #2 on: Aug 6th, 2004, 1:31pm » |
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Quote:| My question is does medication help in the long run or are we making it worse? |
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There is no "long Run" for me when I am in cycle. My only concern is to manage, shorten, and terminate.
There are good medication regimens that will do that.
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UN_SOLVED
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Re: medicate vs. toughing it out
« Reply #3 on: Aug 6th, 2004, 2:47pm » |
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on Aug 6th, 2004, 12:00pm, karma wrote:
My question is does medication help in the long run or are we making it worse? |
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Depends on the person and the medication(s) being used.
Depends on how long the 'long run' is.
Depends on how many HA's there are.
Depends on how bad the HA's are with and without medication(s).
Different people react differently to pain and to medications. There is no standard answer to your question.
IMHO
PF Wishes,
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farmboy
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Re: medicate vs. toughing it out
« Reply #4 on: Aug 6th, 2004, 5:06pm » |
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i also stop the prevents after i go out of cycle.
don't want to mess up a good thing. they work for me now and i want them to work in the future. Also i want the Imitrex to work when needed so i use it sparingly.
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Redd
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Re: medicate vs. toughing it out
« Reply #5 on: Aug 6th, 2004, 7:38pm » |
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Welcome Karma,
Sorry you needed to find us, but glad you did.
I've been going threw these things for 13 years ( since my first ER visit anyway) chronic, but not daily, usually, and K10's only rarely. For three years I was treated with Imitrex injections to abort while I was married and had insurance and was said to have had migraines. (wrong)
After I divorced and had no insurance, I hadn't taken anything for them, and stopped going to the ER long ago because they just thought I was looking for drugs, or attention, who the hell knows.
So no meds other than over the counter stuff, and as the last 10 years progressed these F'ers have sort of mutated, to the point where as of this spring my chronic status has adding full blown cycles my first cycle lasting about 12 weeks.
This beast mutates itself. Episodics can go chronic, chronics get slammed harder and/or more often over time, and there are a few other sub-sets of sufferers as well. Some that have suffered for years.....*POOF* one day gone!
Read Read Read..............Thats what I did.
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karma
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Re: medicate vs. toughing it out
« Reply #6 on: Aug 6th, 2004, 8:28pm » |
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hi all,
Thanks for the help. This site has really helped but its also scared the crap out of me just knowing that it can get worse. Maybe ignorance is bliss.
I was lucky to get a good neuro 15 years ago that figured out what the problem was. He prescribed some preventative for me that I never took so I can't remember what it was. Every other time I went through one of these episodes I took tylenol, advil, whatever by the handful and it mades things worse. Maybe thats why I'm real wary of taking anything. Hospital is not an option for me because they won't have a clue. I live in St. Maarten and hospital care is adequate but no specialists. This time I am taking nothing but an occasional Zomig for the worst ones. I happened on a herbal book right about the time I felt these things coming on that suggested Ginko Biloba and feverfew. I'm taking about 180 mg. of Ginko and a couple feverfew tabs. daily. I'm not sure why this time is different but the episodes are milder and I feel on the verge throughout the day. I used to get hammered a couple times a day but then I felt drained but ok.
You guys need to help me with some of your descriptions. How do you define a cycle and chronic? What are shadows?
Thanks
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IndianaJohn
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Re: medicate vs. toughing it out
« Reply #7 on: Aug 6th, 2004, 9:45pm » |
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Cycles are usually periods of time around which CH's occur.
Chronic is having no relief from the HA's for less the 14 days in a year (I think, someone please correct me if I'm wrong)
The shadows are low to mid level headaches that are sometimes after effects, sometimes precursors. And a big pain in the butt! But alot less painfull than the VH's themselves. The HA's you described as being on the verge sound like shadows to me.
Don't be worried. I learned form one of our chronic sufferers (one who has really been through mill) that it is very rare that people go chronic. I've been episodic for 12 years. The episodes sometimes move about the year. I'm usually March/April and September/October but I've been in this current cycle since May. Worrying may even cause CH's to get worse. Sometimes if I am worrying about the next CH I will get one.
Check out the links to the left too. They contain a wealth of information.
Welcome and Best Wishes,
John
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Redd
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Re: medicate vs. toughing it out
« Reply #8 on: Aug 6th, 2004, 11:56pm » |
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on Aug 6th, 2004, 9:45pm, IndianaJohn wrote:
Chronic is having no relief from the HA's for less the 14 days in a year (I think, someone please correct me if I'm wrong)
John |
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Chronic is re-defined as "no more than 30 consecutive PF days" in a years time. Used to *be* 14 consecutive days. As with this nature of things....things change.
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| « Last Edit: Aug 6th, 2004, 11:57pm by Redd » |
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JDH
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Re: medicate vs. toughing it out
« Reply #9 on: Aug 7th, 2004, 12:37am » |
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on Aug 6th, 2004, 12:00pm, karma wrote:| My question is does medication help in the long run or are we making it worse? |
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IMO it makes it worse.
Years ago when I didn't have any effective abortives or preventatives my cycles were much shorter. Hard to deal with for sure but at the time I didn't know any better....didn't know all you guys were out here either.
Once I started using Imitrex my cycles started lasting months instead of weeks. And I know "they" say it doesn't cause rebound h/a's BUT it seems like the more I use the more I get hit.
Jim
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karma
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Re: medicate vs. toughing it out
« Reply #10 on: Aug 7th, 2004, 5:14am » |
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I don't know if its been done before but it would be interesting to see the results of a survey that described the progression of fellow clusterheads episodes. when they started, what medication was taken, how they have evolved over the years etc. etc. I don't know how to do that and get it in here. Maybe some one can help.
I can't help but think that treating the symptoms rather than the problem may be making it worse.
We all know what REAL pain is and the feeling of hopelessness that sometimes begins to overtake us. I get through by knowing it will end and when it does all is well again.
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Re: medicate vs. toughing it out
« Reply #11 on: Aug 7th, 2004, 10:56am » |
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on Aug 7th, 2004, 5:14am, karma wrote:I don't know if its been done before but it would be interesting to see the results of a survey that described the progression of fellow clusterheads episodes. when they started, what medication was taken, how they have evolved over the years etc. etc. I don't know how to do that and get it in here. Maybe some one can help.
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Look at "C.H.A.T.S." on the top of the general message board. Dan & friends are working on a solution to that.
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EvertBoer
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Re: medicate vs. toughing it out
« Reply #12 on: Aug 10th, 2004, 7:16pm » |
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I've been episodic for 36 years. Back then there was no imitrex...don't know about oxygen. Like so many of us, it was 20 years or so before I was diagnosed. Basically, I took nothing except maybe an aspirin or two, but since the HA's only took about 1/2 to 1 1/2 hours, assumed they helped. In the beginning my episodes were regular as clockwork and I had them every year and each one took about a month or so. Once I hit my 40's, I started having 2-3 years between episodes. I am now 55, and my last episode was last year, lasting about 7 months. But I had a 5 year cycle-free period before that. I still don't use any of the preventatives, because to tell you the truth, they seemed to do very little. But everyone's different. It does seem to me that now that I can abort 99% of the HA's with oxygen at home or imitrex while at work or traveling, the cycle lasts longer. So the future is not all negative. I can't imagine being chronic, though.
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Superpain
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Re: medicate vs. toughing it out
« Reply #13 on: Aug 11th, 2004, 3:15am » |
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on Aug 7th, 2004, 12:37am, JDH wrote:
IMO it makes it worse.
Years ago when I didn't have any effective abortives or preventatives my cycles were much shorter. Hard to deal with for sure but at the time I didn't know any better....didn't know all you guys were out here either.
Once I started using Imitrex my cycles started lasting months instead of weeks. And I know "they" say it doesn't cause rebound h/a's BUT it seems like the more I use the more I get hit.
Jim
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Imitrex may have that effect.
But in my case cycles and remissions have become increasingly longer each time, and my last cycle was the first one treated out of 13 over 18 yrs. The last cycle was 2 yrs before treatment....
I choose meds.
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marfanoidus
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Re: medicate vs. toughing it out
« Reply #14 on: Aug 11th, 2004, 11:28am » |
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Good thread folks.
It seems completely reasonable to assume the longer drugs are taken, the higher the possibility of developing a tolerance to it - and thus, reducing or even eliminating its effects in the next cycle.
My previous cycle is officially over!!!  It lasted 3 months, but the meds (prednisone taper, verapamil and caffergot twice daily) really did a number on the beast. Now that I'm off the cycle, I'm off the drugs. Who is to say I'm not inviting the beast to come right back? Well, the fact I can drink alcohol and not get a HA tells me its gone - for now.
Anyway, I digress.
Since we have the medication survey, which provides some insight into this discussion as to what meds worked in some people for some cycles but stopped working in later cycles, it would very interesting to note how long these meds were taken.
For example, say Verapamil works like a charm in cycle 1, and the person stopped/continued taking it after the cycle ended, and it did/didn't work for cycle 2.
All I know is that I feel for those of you who are chronic, and for those of you whom meds offer little or no benefit.
best to all
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ex_pat_asia
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Re: medicate vs. toughing it out
« Reply #15 on: Aug 11th, 2004, 1:04pm » |
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on Aug 11th, 2004, 11:28am, marfanoidus wrote:
Well, the fact I can drink alcohol and not get a HA tells me its gone - for now. |
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This is also my "acid" test. I know I am completely free of the episode when I drink without a hint of the attack following. However, between episodes I can also drink and get one-offs--it is really all over the map so that the only real choice is abstinence--not an easy choice for me, because I love to drink (especially red wines...the worst culprit). It is odd to say this knowing that for some on these boards to even consider a glass of red wine is anathema.
One of the things that struck me after several days of browsing the posts here are the disparities in the anecdotes. It covers the full range --medication response, degree of the attacks, duration, frequency, conditional and trigger response, even our mental approaches to our problem. Clusterheads may constitute less then 1% of headache sufferers but we definitely are not "peas-in-a-pod".
The complexity seems almost overwhelming when you consider it in that light. Yet we all seem to find a common thread here.
Yikes it is late and I am rambling.....time to go to bed and tempt the beast.
PFDAN to all!
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| « Last Edit: Aug 11th, 2004, 1:05pm by ex_pat_asia » |
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ex_pat_asia
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karma
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Re: medicate vs. toughing it out
« Reply #16 on: Aug 11th, 2004, 1:34pm » |
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I quit drinking about ten years ago. Can't seem to quit the smokes though.
I never tried any of the meds you guys talk about accept Zomig 2.5 mg on this go around and 40 mg prendisolyne. (the kind that dissolves in water)This a.m. was my third dose of that. I get hit about every 2.5 years for about two weeks. I'm into my second week. For the first time its been hitting me at nite every 1 - 1.5 hrs. and last nite I was up 5 or 6 times. Each time with a potential screamer. I beat them all back with breathing and water alone. The last one threatend to get past me but a warm shower helped defeat it completely. So far today I feel great and no Zomig yet.
The trick for me is to begin the deep breathing and relaxing as soon as I can. The longer I wait the harder it is to get it over with.
I know it may not be for everyone but it seems to work for me.
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Superpain
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Re: medicate vs. toughing it out
« Reply #17 on: Aug 11th, 2004, 2:50pm » |
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2 weeks? I wouldn't even use a preventative if my cycles were 2 weeks. O2 and imitrex would do just fine.
It takes longer than 2 weeks just to see the doc....
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karma
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Re: medicate vs. toughing it out
« Reply #18 on: Aug 11th, 2004, 4:48pm » |
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Yea but is it only two weeks because I'm lucky or is it that due to my ignorance I haven't been able to abort the attacks with drugs?
It just seems to me that the constant barrage of drugs into our body's may be making the episodes last longer.
Immediate and blissfull relief sure. But at the expense of having to suffer for months and years on end?
I realy am ignorant when it comes to drugs that work so please don't take offense.
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Superpain
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Re: medicate vs. toughing it out
« Reply #19 on: Aug 11th, 2004, 5:05pm » |
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on Aug 11th, 2004, 4:48pm, karma wrote:Yea but is it only two weeks because I'm lucky or is it that due to my ignorance I haven't been able to abort the attacks with drugs?
It just seems to me that the constant barrage of drugs into our body's may be making the episodes last longer.
Immediate and blissfull relief sure. But at the expense of having to suffer for months and years on end?
I realy am ignorant when it comes to drugs that work so please don't take offense. |
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#1, yes. You are lucky!!!!
#2 no offense taken...
2 weeks... God, what I'd do to have cycles that only last 2 weeks. 
I don't think you have anything to worry about with the meds.
If I were you I'd worry more about how long I'm gonna be lucky with 2 week cycles, treated or not.
I know it still hurts, but.... 
If it makes you feel any better, my cycle peak lasts around 6-8 weeks. That's right before they end and I typically get hit anywhere between 8-20 times per day. I never get more than 1.5 hrs sleep in that period at one time, and the sleep deprivation becomes almost as bad as the headaches. But even then it takes more than 2 weeks for me to get really cranky... 
So yes! You are lucky! No worries! Relatively it's only a matter of mere hours till your cycle will hopefully end!
If we charged dues to be in this club, and cluster's are currency, you got the best deal I've ever heard of!
Here's to next week! 
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Re: medicate vs. toughing it out
« Reply #20 on: Aug 11th, 2004, 5:17pm » |
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Karma,
Welcome to Clusterville. When it comes to meds, everyone has a different opinion and approach. I'm not chronic so I don't worry too much about prevents.
Most people will say that Imitrex causes a cycle to last longer than normal. I thought that too until the last 10 years using Imitrex. I realized it doesn't make no difference. Some cycles are 8 weeks and some are 18 weeks. I use Imitrex for all cycles all the time. Nothing else works for me except 02.
ps. I wouldn't worry too much about becoming chronic. I've been episodic for 25 years with a cycle every year & sometimes two cycles a year. Not chronic yet.
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karma
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Re: medicate vs. toughing it out
« Reply #21 on: Aug 11th, 2004, 5:27pm » |
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Yea a helluva deal. 15 years or so and its stayed pretty consistant. Two weeks is when I get slammed I don't count the daily prics that lead up to it. In fact this is the first time I began to realize their was a pattern. I can't tell you how positive I feel by succeeding in stopping the pain in its tracks by controled breathing and water. If left unattended these were ones that would have had the snot rolling out of my nose.
In the past I had a perfectly good tooth pulled thinking that was the culprit. I had to damn near threaten the doc to jerk it. I think he saved it and put it in someone else mouth.
Superpain, do you remember the first time you got hit and how long the cycle lasted?
Why take prevents if you still get hit?
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Superpain
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Re: medicate vs. toughing it out
« Reply #22 on: Aug 11th, 2004, 6:40pm » |
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I was 15 when they started. I'm 34 now. This last cycle, after finding this place and getting a doc referral, was the first time I recieved any treatment beyond stadol.
The first cycle was about 4 months long. My last cycle was over 2 yrs long. I've had about 13 cycles. Each cycle and each remission gets longer.
Until I found this place I had given up on seeking treatment, never knew anyone else that had them, and was resigned to the fact that it was my job to suffer. 
I don't anticipate getting hit for another 2 yrs or so, then I'm gonna be in for a long haul... But at least I know what to do now.
I will not go unmedicated again.
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karma
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Re: medicate vs. toughing it out
« Reply #23 on: Aug 11th, 2004, 7:13pm » |
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Damn.
I can't blame you. I'll bury my theory. Its just not the same for everyone I guess.
Its good when life is good again.
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Superpain
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Re: medicate vs. toughing it out
« Reply #24 on: Aug 11th, 2004, 7:42pm » |
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Well, everyone is different, but there is evidence to support your theory especially concerning imitrex...
But fortunately for you, your cycles aren't even long enough for you to even worry about it.
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