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        New Message Board Archives >> Medications, Treatments, Therapies 2002 >> Prednisone is providing relief
        
(Message started by: jmorgan52 on Apr 18^th, 2002, 9:37am)

Title: Prednisone is providing relief
Post by jmorgan52 on Apr 18^th, 2002, 9:37am

I am 4 weeks into my latest CH episode.

I am having some success with Prednisone at the moment. I took a 5 day taper down course 10 days ago but CH came back when I got to 2 pills a day and then had a lousy 4 days before starting a new 2 week course of 6 pills a day for 5 days then 4 pills for 5 days, then 2 a day foro 4 days. Pain free now for 4 days since 12 hours after starting the pills.

I think the secret is getting the dose just right so the pain does not break thru

I now firmly believe that CH is caused by inflamation in the brain, either from something seasonal (pollen?/climate?) or even some sort of recurring virus.

I intend to take a course of Prednisone at start of next episode and see if it save me money on the expensive inj. They make me feel a bit tired but at least it is better than paying for 2 Imitrex shots a day!

Title: Re: Prednisone is providing relief
Post by Linda T on Apr 18^th, 2002, 10:04am

Hi Jmorgan. I too have had luck with pred. Back in Jan. I was on a 12 day course and it worked great until the last 2 days. I am now on pred again for the 3rd day of another 12 day course. I am still getting about a #7 hit per day (only 1) as compared to the 5-8 I was getting last week.

My understanding of pred is that it should only be used short term until another prevantative can take hold. For instance, with the pred I am now starting Inderal. I'm hoping that by the time the pred taper the Inderal will have kicked in. THe first time on pred I was taking it with elavil which did nothing.

Maybe you can get your doc to prescribe another prevantive for you to take in conjunction with the pred and see what happens.

Good Luck. PFDAN to all, Linda T.

Title: Re: Prednisone is providing relief
Post by jmorgan52 on Apr 19^th, 2002, 1:52am

I am sleeping much better after mon pm to fri am on Pred 3 x5mg pills in morning, 2 in evening. Strange but I still get all the pre CH feelings at the "ususal" times, and fully feel a head banger coming, but it ends up a vague 0.5 on the scale, and I have been pain free.

I am wary of trying any other stuff right now. I have taken EVERYTHING for 30 odd years with no success until Imitrex (Imigran in South Africa) and Prednisone.

I want to "see what happens" with the longer med time first.

My current crazy personal belief is that a normally dormant cyclic virus is causing some brain inflamation which causes blood flow to change, causing intense pain. The cortisone seemingly reduces up the inflamation.

My advice is to increase dose by 1-2 pred pills at a time if the pain breaks thru until you strike the right balance for being pain free. It is different for everyone.

I intend to go straight back onto Pred 4-5 pills a day during or after the 2 week taper down if the CH pain breaks thru at all. I cannot afford many more injections for at least a year and I will keep my stock for emergency only.

This is much cheaper and more pleasant than imitrex and apart from feeling tired earlier at night and lazier during the day my life is fun again.

I will keep you posted. Please let me know how you get on too.

PS Linda, all the medical stuff I read on CH before this message board said it was man thing!

Title: Re: Prednisone is providing relief
Post by oringkid on Apr 19^th, 2002, 8:01am

Be careful of the Prednesone!! It can do some bad things if not taken correctly. There is a reason it is only used short term. I don't know all the particulars, but I am sure there is someone here who does or can point you in the right direction for info.

Pred. also lowers your immune system big time! Don't self medicate without a doctor's approval.

Title: Re: Prednisone is providing relief
Post by jmorgan52 on Apr 19^th, 2002, 9:02am

Thanks for the concern,
I have read lots on it and know about the risks, and I am taking it the right way in my opinion.

I am working with a doctor and am very aware of the side effects, which are much better than the CH. My plan is to stay on Pred for 2 weeks or so then cut it out until the next CH episode. My doc is happy with this.

If it shaves a few weeks of my life so be it, I've already lost lots of days to CH! I will be careful though.

The stuff taken in my "ignorant days" like Lithium and ergots were much worse and I survived them all.

Title: Re: Prednisone is providing relief
Post by oringkid on Apr 19^th, 2002, 9:12am

Good deal! I hope it works out well for you!

PF for everyone!

Title: Re: Prednisone is providing relief
Post by eyes_afire on Apr 19^th, 2002, 4:07pm

I avoid prednisone. I makes my muscles and joints so sore that I can't change positions from standing to sitting or vice-versa :o. I never took it for clusters. I took it for a severe bronchial inflammation.

Title: Re: Prednisone is providing relief
Post by kim on Apr 19^th, 2002, 4:55pm

eyes a fire, I hear ya about the muscle problems. I have read a lot of people here have success w/pred. I'm pretty sure it's preventative. Short term use ONLY. I have also taken lithium and ergot (also a "bust"). The pred really screwed me up. I went to take a shower and could not raise my arm - scary. It did nothing to stop my attacks and whats more, i felt like i had cerebal palsy to boot. Gotta be careful. I don't know about other folks, but when I'm at peak cycle, I don't think particularly well. I had a hard time keeping track of all the meds I was on. Prednisone has a distinct dosage (tapering thing). Well, I must have screwed up and believe me i hit the floor like a sak of potatos. That was about 10 years ago. Have had numerous cycles since then. MINUS the Pred. I guess it's hit and miss. What works for some, don't for others. Taking Neurontin now. Seems to have interrupted my cycle. But I've had problems with side effects. But, like Jmorgan, it beats the CH, so hanging with it.

Title: Re: Prednisone is providing relief
Post by jmorgan52 on Apr 20^th, 2002, 6:26am

After mon-fri on 3x pred in morn and even, I cut down to 2 tabs last night and 2 this am. 9am and it started again. this time I took Maxalt wafer which my doc wanted me to try as alt to expensive imigran/imitrex inj.

I saw him mon 3pm and was during an attack. !st time heed ever seen one! I took maxalt, it melts on the tongue. It took about 3 hours to work but finally went with no shadow headache left (which can be no joke in it's own right), just like the imigran/imitrex only that only takes 10 mins to work.

I had another attack the next morning and took maxalt again with exactly the same results. Then 5 days clear and then this one today. Also took 3 hours but I was able to "get into it" with the maxalt and the 3 hours flew by I just lay on the bed and the morning just dissapeared. I feel fine now. Prefer the inj.

Don't know if the Pred is just changing cycle from 1 or 2x daily to every 5 days.

Maybe the best way to break the cycle is to just ride the pain out? Any supporters?

Title: Re: Prednisone is providing relief
Post by oringkid on Apr 20^th, 2002, 11:16am

ok, I will probably get beaten up for this but, here goes

In My Humble Opinion and based on My Body

I feel that the meds tend to make the cycle last longer and cause the headaches that do come, much worse and much more frequent than if you let the cycle take its natural course and just cope with the pain using non medical coping devises. (ice, heat, hot sauce, oxygen) I think the systemic drugs may be causing more people to go from episodic to chronic. And basically just making it worse.

Now, that said I will also say that in the case of the chronic CH'er, I am sure that "just riding it out" is NOT an option. And some people just cannot "ride it out" so, I guess you have to decide what is best for you. What can your body take? Do the benefits out way the side effects etc. As we all know, what works for some, does not for others.

Some people think I am crazy for not dealing with the drugs anymore, but when I no longer had ins. I had to go without and I swear, my cycles don't last as long and the ha's are not as bad as when I was on the meds.

But, that is ME, MY body, and I don't recommend MY way, cuz it might not be right for anyone else.

That is just my opinion, take what ya need and chuck the rest. :)

oring

Title: Re: Prednisone is providing relief
Post by Linda T on Apr 20^th, 2002, 11:27am

Hey origkid: I am tending to believe that your theory is correct about the meds.

My first cycle - 18 years ago, I did nothing. I had no idea what I even had. Cycle was 1 hit per day - sometimes 2 hours long - sometimes kip 10 - lasted 3-4 months. Never woke me up. Just that 1 hit a day at about 7:30p each nite.

Next cycle - 11 years later - took pred for 30 days togethe with elavil. Still only 1 hit a day. Either meds worked or cycle ended but last approx 3 months.

Next cycle 2 years later - only to 25 mg elavil for 30 days. Cycle only lasted about 2 weeks.

This cycle - going into 6 month. Two courses of pred, elavil, depakote, imitrex, amerge and now inderal. Getting hit anywhere between 5 and 8 times a day. No relief. I've tried to "tough it out". I last a few days to a week because it gets unbearable.

I'm going to try to get the neuro to give me o2 on monday. I'm hoping that I will have success with this as well and I would love to be med free. At this point, something has got to give. Enough already!

PFDAN always, Linda T.

Title: Re: Prednisone is providing relief
Post by eyes_afire on Apr 20^th, 2002, 8:13pm

Oringkid, I don't think you're crazy. The more meds I hear about, the more disappointed I get. Some of the side effects I think are alarming. Over the past year I suffered through 2 dangerous health problems from prescription meds (one was an antibiotic and not CH related, the other was Paxil), and I don't want to mess with prednisone because of the problems I had in the past with it. This cycle, the combination of O2 and Verapamil did okay for me and helped me survive (and the occasional imitrex pill.... works slow but I'm more worried about increased side effects with injectable). Personally, I don't want to have to try some of these other medicines. It's gonna depend how desperate I get. My cycle is ending so I'm already planning for next cycle in about 5 or 6 months. At least for once I would like to be able to break out a surprise can-o'-whoopass for the beast as he comes galloping around the corner.

Title: Re: Prednisone is providing relief
Post by Donna on Apr 21^st, 2002, 8:29pm

A great number of people find that Verapimil is the best source of prevention.......a lot of us use Verap. and an abortive such as Pred. along with oxygen and/or Imitrex.

But Inderal is not usually helpful with ch's.

Do some searching for Verapimil. And check out the dosages as docs tend to give us way to little to be useful. Common amount for starters is 480 mg. Talk with your doc about this being right for you.

Check out the medications button on the left and also go to the OUCH site for some additional really good info.

Good luck and keep us informed.

Title: Re: Prednisone is providing relief
Post by jmorgan52 on Apr 23^rd, 2002, 1:49pm

At the end of my second course of Pred. It seemed to keep CH away for about 4/5 days then stopped working again? I have had 4 bad ones since Sat am. So frustrating when you think something works for you. Back to imitrex inj the trusted but expensive standby. I found 2 old diaries today 1999 and 1998 and bugger me if the episodes happened during April those years too. I hate April!

Title: Re: Prednisone is providing relief
Post by Sweet_Landings on Apr 23^rd, 2002, 6:14pm

There is another way to take Prednisone...

My husband has MS and has taken Prednisone for 8 years now. He is finally down to 5mg daily and will stay at that dosage. Last year he had a bad episode where he went blind due to severe swelling of his optic nerve. Our Dr. ordered a 3-day Solu-Medrol (sp?) drip. They put him on an IV and ran 3 grams of Solu-Medrol thru him over 72 hours. They gave him .33 grams every 8 hours. It is a rough treatment as it is Prednisone and the mood swings, rapid heart beat and all the side effects are much more present than with oral treatment. When he got this treatment, we did it at home with a nurse coming in every 8 hours and staying for 2 hours. By the second day his vision was back and there was no permanent damage to the eye. He has not had another exacerbation with the MS in 18 months now, which is very unusual for him.

Our Dr. said that this type of treatment is not as harmful as taking large doses of Prednisone orally and having to taper off.

My thought is that maybe this treatment would work much the same for CHers. ???? Just a thought.

Title: Re: Prednisone is providing relief
Post by tommyD on Apr 24^th, 2002, 7:43am

It seems a lot of people are taking a lot of serious medications with some serious side effects. Many feel it's worth it to get rid of the Beast. But there are non-medication alternatives that work for some, if you consider oxygen and water as "non-medications." (tho technically, they are medications, and they can have side effects).

Oxygen works very well for most for immediate relief. Others have had some luck with hyperventilation, intense exercize, redirecting blood flow through concentration (Charlie's circulatory feedback), cold air, ice packs, hot showers, etc. I had good luck drinking large amounts of water at the onset of an attack, but I don't know that it will work for others.

Non-pharmaceutical preventatives are not as common. The water X 3 treatment (see button at left) has worked to break up a cycle for some.

How about a minimum medication strategy? The best preventative with the lowest doses and the least toxicity is "shroom" therapy. Only a few small doses can wipe out entire cycles for a large percentage of those who have try it.

Psilocybin/psilocin is not without its drawbacks. It is illegal in most countries. And it should be avoided if there is mental instability -- though so should many legal pharmaceuticals. And it must be done properly if it is to work well. Many drugs prescribed for CH will interfere with shroom therapy, others may unexpectedly enhance the psychoactive effects :o surprise!

It is necessary to withdraw from these medications before taking the shrooms, but that can let the beast in. And shrooms work best if taken at the beginning of a cycle or between cycles. When the cycle is rolling full force, it can be difficult for shrooms to work their magic, and chronics don't don't get a break in which to take the shrooms.

So how about a "minimum medication" strategy? Use Oxygen or other non-pharm abortives, and shrooms as a preventative. Chronics and those in mid-cycle can try water X 3 to drive the beast back so the shrooms can take hold.

All that's easy to say. Doing it is another story. But I keep hearing about all this heavy use of steroids, ergotamines, opiates, rebounds, people going bankrupt trying to stay supplied with triptans...there's gotta be a better way.

Do I know what I'm talking about? Not necessarily. As my old professor used to say, "Don't believe ME, check it OUT!"

info on shroom therapy:
http://www.headachesupportgroups.com/shrooms/index.htm
message board posts on shroom experiences:
http://www.headachesupportgroups.com/shrooms/2001.htm

Title: Re: Prednisone is providing relief
Post by Elizabeth on Apr 24^th, 2002, 8:39pm

Works for me.... only....

I wish shrooms worked on episodic CPH....

Title: Re: Prednisone is providing relief
Post by jmorgan52 on Apr 27^th, 2002, 2:55am

I finished my course of Pred last Weds and got another headache thurs 1am at about level 4. It was different from the usual CH in that it is more central than on the right side. At 5am I gave up and took imi injection as I had big meetings the coming day. It cleared it up and I was fine all day untill 11pm when it started again in the centre of my head. It lasted 48hours and I toughed it out with OTC painkillers. Woke up Sat with a fairly clear head. I recall this happening as the last cluster broke in 1999. I hope this is the end of the current 2 month episode. Anyone else find that the headache changes at the end of the cycle?

I am undecided about Pred now. I am realy not sure if it helped or whether the CH was just doing it's own thing anyway.

Title: Re: Prednisone is providing relief
Post by oringkid on Apr 27^th, 2002, 9:04am

Mine definitely change near the end. Like you they tend to start more centrally. I will get a top of the head ache which feels kinda sick and then it slowly resolves itself to the side (I am left sider) The end ha's are longer and nastier but come less frequently. I am getting only 1 per day now. If I use a trigger to bring it on (ie alcohol) it is more normal. (I know that sounds weird but in the beginning and at the end, I use beer - not wine! wine makes for horrible pain - to manipulate the timing of my ha so I don't get it at night. This doesn't work during peak, too many of them coming)

As for the prednisone, my experience with it is that it only worked for the time I was taking it once I got down to the last of the pills it came back. My doc prescribed it to abort the cycle. Since coming here and reading others stories, I have found that the docs are now prescribing it as a "pain holiday" usually to give you some pain free time while another med gets in your system and starts working. I guess if you look at it like that, just a "pain holiday" it does work. But only for the period of time you are taking it.

Sherry

Title: Re: Prednisone is providing relief
Post by jmorgan52 on Apr 27^th, 2002, 11:14am

Thanks Sherry for the feedback. I definately had 2 CH holidays of about 5 days each on Pred, then they came back as before. Is the Pred also prolonging the episode? I checked back in April 1999 and I used 16 injections and the episode lasted 5 weeks. This time I have also used 16 inj but it has lasted 7 weeks including the "Pred holidays".

I also used lots of OTC and toughed it out lots of times in both episodes. I am thankful for Imitrex inj in that I can now get on with life and can get through meetings, work and social engagements knowing I have an "emergency parachute".

In the past (pre 1995) I had nothing that helped. I just shut myself up and got through up to 12 hour spells of pain until vomiting, after which I felt a bit better strangely.

Pain free so far today and feeling different (better).

I was hoping that Pred would be the new lifesaver but now have doubts. Injection is still the ONLY SUREFIRE RELIEF.

I avoid all alcohol during episodes as it brings on a headbanger inside 30 minutes, but having said that it makes absolutely no difference to the number, extent or length of the CH episode, it just changes the timing dramatically and my wife nags me if I drink during CH.

Title: Re: Prednisone is providing relief
Post by oringkid on Apr 27^th, 2002, 1:37pm

Quote:

In the past (pre 1995) I had nothing that helped. I just shut myself up and got through up to 12 hour spells of pain until vomiting, after which I felt a bit better strangely.

This sounds much more like a migraine than a cluster. Do all of your ha's last more than 2 hours and end in vomiting?

Very few people vomit with ch.

Title: Re: Prednisone is providing relief
Post by Linda T on Apr 27^th, 2002, 4:25pm

Dear Jmorgan: My experience with pred is very similiar to yours. I just took my last 10mg tab of pred today. Started at 60mg on 4/16. I still kept getting at least 3 hits per day. Then I had a blissful 2.5 pf days (4/21-4/23). Since then I have been getting hit 1x per day - usually at 6a and usually around 5 on the kip. I also take 60mg inderal daily. Frankly, I do not think that the meds are doing a thing. I think the cycle is just ending. My attacks do come differently now in what I hope is the end. During peak, my warning is pain in my neck right about in the area where you would feel for a person's heartbeat. It just feels like my neck swells up and it's pretty painful. In a matter of minutes the pain shoots up the side of my face and hits my temple and eye. Now it's not like that. I just feel tons of pressure around my eye. Stronger than a shadow. I now have mild to moderate shadows at the times of day when I would usually take a full blown hit.

This is the first cycle that I've had where I've been on what I would consider alot of meds: elavil, pred (2x), depakote, imitrex, amerge and inderal. This is also the longest cycle I've had (just past my 5 month mark). While on depakote I started getting up to 8 hits a day any time any where. I have some serious reservations about the use of all these meds. I think the depakote made my cycle longer and more intense. I think the imitrex just caused my attacks to come in the daytime rather than the usual nite. I've tried "toughing it out" and have lasted a rather impressive 2-3 days! LOL. Can't be done! Not for me anyway.

Anyway, I feel much better off the meds (or at least on a limited number of them). I have not used imitrex or amerge for about 20 days now.

Hope that helps shed some light. Wishing you PFDAN always, Linda T.

Title: Re: Prednisone is providing relief
Post by oringkid on Apr 27^th, 2002, 8:15pm

Linda, for what it's worth, the first med docs put me on was inderal and it did nothing, at all. I was able to judge alot of these meds (the old ones anyway) cuz I was on one at a time. I was then put on elavil which was great for making me fall asleep (when I should not, like driving to work!) but absolutely no good for the CH.

I have not ever tried the new drugs cuz I feel that they have side effects that I don't want to deal with. As you read, I did the pred. and it is a "holiday" but no more, at least for me. I am at the end of this cycle and next cycle which I hope will not be for another 2 years, I intend to try out the o2 therapy. (I would try the shrooms but I am deathly afraid of vomiting, weird I know, but some people are like that)

I have almost the same results as most of the people on this board report when using the meds and I use NO meds. Personally, I think the meds cannot be judged well due to the brevity of the CH ha's and their unpredictability. (for a predictable disease, it is sooo unpredictable!)

Just my 2 cents.

Sherry

Title: Re: Prednisone is providing relief
Post by Jesse Heller on Apr 28^th, 2002, 6:27am

Hello-
I have been on Prednisone since my sinus operation in mid December. I am weaning off at this point and my CH came back. I never gave this thought till I read these posts.

Title: Re: Prednisone is providing relief
Post by jmorgan52 on Apr 28^th, 2002, 1:16pm

ref Oringkid's question about vomiting and CH. Well I definetely have ALL the symptoms of CH (for at least 30 years worst luck) right eye waters, right nostril runs, pain inside right eye and surrounds, etc, etc. Migraine is also always a one side of the head pain so what is the difference?

I usually only vomit when I have a "10" and no meds like imitrex available. The pain is so severe and disorientating that I feel nauseus. This is about once or twice per episode. My CH last for up to 6 hours if not treated and then at least another 6 hours of soreness/tenderness in the area of the headache.

I have been diagnosed as having migraine by many doctors over the years, but they are always episodic, last for a month or 2 and come every year or so. I am not really sure if ANYONE really knows the difference! Doctors certainly don't know much. The various med cocktails they try out on us prove this. They are ALL shooting in the dark in my opinion.

In my opinion they are the same thing - shoot me if you disagree but tough! The only difference seems to be that migraines can be random, whereas CH seems to follow a pattern. I have been mapping this for several years and it is for me as follows:

Firstly I get about 20 mild to severe "general" headaches over several months which can be fixed with aspirin, then 12-20 very severe headaches that cannot be stopped with anything but imitrex inj, then another 10 or so mild ones, then nothing for at least a year.

I reckon imitrex is the only real answer to date. I got through the pain "(obviously as I am still here) for years before imitrex/imigran. Not sure how, but I did. The difference was that I did not have a life during a cluster before the injection. It was a lifesaver for me as I no longer have to take much sick leave now. I just jab and get on with it most of the time.

I am now in search of the CAUSE not just relief. I have given up everything on the list of no-nos (choc, alcohol, dairy, you name it) and it has had absolutely no effect. My "virus" theory has met on stoney ground so far. No one seems that interested in the cause, only how to relieve the pain, because that is where the money is! Just ask the makers of Imitrex.

Title: Re: Prednisone is providing relief
Post by Bob_P on Apr 28^th, 2002, 1:30pm

Well read the info here and in the OUCH Library. Then you may start to get a feeling for the cause.

There you will also learn the very, very big difference between CH and migraine. A simple way to learn the difference is to look at the OUCH Headache Comparison Table.

Title: Re: Prednisone is providing relief
Post by Ted on Apr 28^th, 2002, 1:49pm

Anyone still getting their panties twisted in knots because you were asked to do a little reading into what's offered here in terms of CH info, please read this post I copied and others in this thread by JMorgan where he doesn't know the difference between a CH and a migraine. Doesn't know the symptoms of CH or their length nor the intensity difference between a CH and a migraine. Or even that what he has read somewhere claims that CH only hits men (nothing in medical literature written for a LONG time has made that claim and no info here makes it at all) is completely fallacious and outdated by decades. If you still don't know why it's good to do some reading after this example, well, then you still don't, I guess.

on 04/28/02 at 13:16:12, jmorgan52 wrote:

Title: Re: Prednisone is providing relief
Post by kim on Apr 28^th, 2002, 5:59pm

Ok, here goes. I have taken many meds over a 25+ year period, with numerous "nueros and headadhe sepcialist titlles. Any med that they try on you (whether it be preventative OR aborive) carries with it a "high failure" rate..........sorry. It keeps happening. When I was beginning with the ch waltz, I was 12 or 13. I was a kid. I am now 41, and STILL have a hard time finding a "point of connection" with any Neuro. Over the decades that I have been "dancing", i have come up with my own ritual (if you will). It is a coping mechanism. throughout your time on this earth, for some reason it will be demanded that you share varying amounts of your time on earth, in the company of an ungodly pan. It comes and it goes. It is truly a profound way to spend a bit - o - time...............
Someone here once put it: Shot in the Dark. Yup. Still is.....So there is my pond scum....................

Title: Re: Prednisone is providing relief
Post by jmorgan52 on Apr 29^th, 2002, 5:10am

Thanks for the slightly anal response Ted. I did not realise people were so protective of the Cluster Headache name.

I have read stacks of stuff on CH and Migraine over the last 35 years I have suffered from them (including all the stuff this site points to). Why do you think I came to this site in the first place?

1995 was the first time I ever heard of CH and my neurologist finally diagnosed me with them. Before this time I assumed I had migraine and all my doctors agreed, which shows how much they know. My experience from this site is that we all have slightly different symptoms.

I'm sorry if mine do not last 2 hours exactly and because I occassionally get physically sick and so do not fit your perception of what CH is or is not.

The point I am making about the CAUSE (and that goes for migraine too) is that it is still conjecture. If the real cause was actually proven and known then a cure or reliable prevention would by now be available.

As I have stated - for me the only thing that works reliably every time is imitrex inj. I would prefer a definitive statement on what causes the CH in the first place and a solution that does not involve trying out numerous drug cocktails.

Title: Re: Prednisone is providing relief
Post by Ted on Apr 29^th, 2002, 6:03am

Anal. OK. Let's start there. We aren't the one's with pains in our asses and we aren't the ones who are pains In the asses, shmuck. We want out of our pain. We don't want to stay in it, schmuck! You want to know another difference? Your little pain starts in your brain stem. Your hypothalamus is the right size. Sorry I didn't bring this up earlier, schmuck, but I didn't want to confuse YOU with too many facts!. Ours don't start in the brain stem and our hypothalamuses are enlarged (and no, Einstien, not by an enlarged brain from swelling from pollen. For you episodics that it comes at 2 certain times per year has to do with the internal clock the hypothalamus regulates. Ditto for the circadian rhythms and why they come on at the same time per day). READ!!!!!!!!!!!!
I puke too sometimes. That's not the symptoms I was refering to, doctor. Stop reading stacks and start reading sheafs and maybe you'll get a clue. As for the timeframe? 12 hours is NOT a cluster. 12 hours where the pain is the same as your migraines is not a cluster. The fact that you think the only differences are that CH are patternable and migraines are random tells me that you ONLY get migraines but when they are going to predictably come they are called CH by you. YOU do us all a disservice by making the medical community think as you do. Cut the shit. I want out of my pain and I don't need some peon like you trying to convince your medical community that the only difference between a CH and a migraine is the pattern of how often they come. Cut the shit now. Migraines are not clusters. READ!!!!!!!!!! Stop fucking with our potential to get something to help us, if not cure us, by what you "think." If you read anything on this site half your posts would have been not even mentioned.
You assumed right the first time. You have migraines. NOT CHs. And for those of us who have CH? We want the cause too. Welcome to what a lot of us are here trying to figure out. READ!!!!!!!!!!!!!
Hope all is well with you. All my love,
Ted

Title: Re: Prednisone is providing relief
Post by Ueli on Apr 29^th, 2002, 8:11am

on 04/29/02 at 05:10:39, jmorgan52 wrote:

I did not realise people were so protective of the Cluster Headache name.

It has nothing to do with being protective, but all with sound scientific method: Be precise with your description so it's clear to (almost) everybody what we are talking about.

on 04/28/02 at 13:16:12, jmorgan52 wrote:

... Migraine is also always a one side of the head pain so what is the difference?...
... I am not really sure if ANYONE really knows the difference!

This argumentation would be worthy of your fellow compatriot and snake oil salesman Dannyboy. I'm starting to have some doubts on the educational system of South Africa. :-[
About the difference: Ask anyone who suffers from both clusters and migraines. For those that not only write garbage but do some reading too: There are quite a few testimonials in the archives from those who suffer from both.

on 04/28/02 at 13:16:12, jmorgan52 wrote:

...Doctors certainly don't know much. The various med cocktails they try out on us prove this. They are ALL shooting in the dark in my opinion....

Frankly, I don't give a damn for your opinion. Someone who still propagates "knowledge" outdated since 50 years such as viruses and allergies as cause for CH (and migraines) should not take up so much space on the MB.

I hope you can find soon relieve for your "cluster-migraines" and get your honorary doctors degree for your valuable contributions to the cause,
Ueli

PS for Dannyboy: Have you already written to jmorgan52? He is a potential customer for your business.

Title: Re: Prednisone is providing relief
Post by jmorgan52 on Apr 30^th, 2002, 8:46am

Dear Ted and Ueli. Please let me start again. I came looking at this site out of sheer desperation. I have been feeling doped for what seems like months now so perhaps don’t always think so clearly. But don’t please don’t kick me. You may well be right and perhaps I suffer from Cluster Headache, Migraine, and Cluster Migraine combination, something I had not considered before. I experience symptoms of all these types of headache at different times in the cycle, but generally all are in the same 1-2 month time frame. It is seasonal (I also have many pain free years), but the seasons shift over the years. I have seen many doctors over the past 35 years who have not helped much to diagnose, only to prescribe for me. No meds helped until the mid 90’s. I lived through all these episodes, but only just.

My headaches start quickly and reach maximum pain inside a few minutes so I know if I will be able to tough it out or not, but when that murderous 10 pain comes along I take the inj as soon as possible before I have to go and die somewhere. I can’t ride the pain out anymore like I used to (had to), and get desperate if I am low on imigran inj. I no longer really know how long the pain lasts without the inj, I rarely wait to find out any more, I can only take about 30 mins of it. It used last a few hours (pre 95), then I got another one a few hours later, then another until I was drained. Using imigran the pattern has changed. I now get 24-36 hours relief after the inj so the “cluster” definition is perhaps harder to “fit”.

The migraines are very different and can last for many days, also coming and going or often just staying. They are not as painful but they are relentless. I will usually tough out a migraine unless I have work or social responsibilities, in which case I take an injection and get on with life.

I have used imigran injections for the last 7 years, because I cannot bear THAT CH pain anymore. But, I am shit scared of what all the Triptan is doing to me. I maybe risk a heart attack every time I use it. My blood pressure is up and I know it is doing me no good. I want to get off the injection, not just to save money, but how? What is the alternative? I cannot go back to the pain.

What do you do?

this post I started turned out to get me some good info, including your very good but rather rude advice (I apologize for calling you anal, ok). The “Prednisone Holiday” result was disappointing. I was pinning my hopes on Pred as a winner to break the HA cycle, but it seems I was wrong. I feel strongly that I will find help here and that I am in the right place. I am not going away!

Love J

Title: Re: Prednisone is providing relief
Post by DaveK on Apr 30^th, 2002, 3:05pm

Hello all, newbie here.
I haven't had a CH for about 16 months (knock on wood) and found that Prednisone worked for me last time quite well.

Just thought I'd share some of my brother's experience with Prednasone. He took it while he was undergoing chemotherapy to enhance his appetite. The end result was two new hips from the Prednisone.

I can understand the urge to take whatever it takes but as has been mentioned here before, try other stuff too.

Take care.

Dave K

Title: Re: Prednisone is providing relief
Post by Ted on May 1^st, 2002, 12:30am

Welcome Jmorgan. Good way to write that. I got all choked with your "please don't kick me" comment in the begining and waiting till you went through your whole sob story and at the very end remembering that you kicked first and asked me to forgive your insult. Let's try this again. Maybe say it as "please don't kick me BACK for kicking you to begin with and trying to make you look like a complete not a very nice person." I'm sorry you're in a lot of pain. I really am. What was it that got you to see a difference between a CH and a migraine between your last two posts? Not very long ago you said you thought the only difference was that one was on a set pattern and the other was random. And other than that there was no difference. I'm quite impressed that there are such distinguishable features suddenly appearing for you.
I'm sorry you deal with this on certain seasons. I deal with it every day of my fucking life. No seasonal breaks and no opportunity to say it's as light as yours are. Does that make me a hero? Nope. It makes me an not a very nice person, as you are witnessing. So take your "don't kick me" attitude to someone who will give a shit after you insult them. 'cause that ain't me. Insult me and I won't give a shit about you. Funny thing about me like that.
I'm still not sure how you figured out a how you suddenly tell the difference between a CH and a migraine when the last we heard from you they were the same!

Title: Re: Prednisone is providing relief
Post by Ted on May 1^st, 2002, 12:46am

JMorgan? One last thing I should probably say here so you know. I don't care if you have CH or migraines. I just reread what you wrote again and if you need someone to scream at/to, I'm at jayacat2@aol.com. If you have CH you'll have all of us. If not, as much as I just yelled at you, I hope you can feel free to e-mail and talk about it all. If you're getting hit by something else you still are getting hit hard by something. And that's not fun no matter what it is. :-/

Title: Re: Prednisone is providing relief
Post by Head_case77 on May 1^st, 2002, 10:51pm

Yes, I agree with you that c.h. is definitely an inflammatory condition and very likely due to a brain allergy caused by some unknown "x factor". It is very strange because every time my headache changes I notice a new prominence of my coronal sutures, which are the edges of the frontal bones of the skull. This last time, when I went from a daily 4 to a daily 9 on the 1-10 scale, to the very date (November 2), I noticed another definite change again in the prominence of these bones. Most people would not notice it, but if you really know your body these subtle changes can be very evident, disturbing and bizarre. It makes sense because any kind of increase in water within the brain cells will be disturbing to these bones, because the brain has very little room to move inside of the cranium. Has anyone else experienced this type of phenomenon, involving the frontal bones of the cranium? Too, it is interesting that steroids are generally so effective for C. H. and that the NSAIDS naprosyn sometimes takes the edge off for me. (These are both anti-inflammatory meds).

So glad the prednisone is working for you :). I haven't given it a two week try since this bout began last November, but want to try it after I get off of the Inderal LA, which I believe is not helping. For the last several months, basically I have been on Prozac and Inderal daily. as well as hydrocodone and occasionally Tegretol for remeidal relief. I get good response from the Tegretol but am scared to take it daily or long term because of its side effect profile. Also, I don't want to be on narcotics for more than 5 or 6 months for obvious reasons. But up to this point nothing has worked for this worst bout of my life, so what am I supposed to do in the meantime? The pain is constant and I must function!

Well, keep on keeping on all you headcases out there, and God love you all!

Franco