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newbie to forum not to CH (Read 1089 times)

cigarman

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newbie to forum not to CH
May 22^nd, 2011 at 3:11pm

Hi, Newbie here to the forum, but not to CH. I was diagnosed in the early 90's with CH. for about the first 10-12 years they were almost daily with 5-6 breaks a year for a couple of weeks at a time. Now i usually have a 6-8 week bout twice a year. Usually fall and spring. I just started a second bout this spring. (somebody just shoot me LOL). I usually only have one a day between 7:30 and 10:00 pm. but have been getting a second one between 12:00 - 2:00 am. You know the one that wakes you up and it is already too late for the meds to do any good.. I use Imitrex nasal spray (Thank God it is now generic). My wife has an Oxygen machine and I have had some luck with it, crank it as high as it will go. I am 57 years old , live in Hot Springs, AR. And yes I smoke cigars. My Dr. told me that could be a trigger, so I quit for 15 months ( back in the early days of year around headaches) but it didn't help so I started back and have quit and restarted too many times to count. I do try to cut back when in a cycle because it does trigger a CH sometimes but doesn't seem to trigger the bout. I also have chronic headaches and have been taking fiorinal #3 for about 20 years. For the last 15 years or so I have been taking 10mg of Valium for sleep at night. Never have been able to sleep good, now i usually sleep good except when the dreaded CH strikes. At least after the pain has gone I can go back to sleep.
Sorry for the rambling but thought i would try to give a brief history of my CH's. Don't you just hate it ( and are REALLY jealous) when some tells you they never have headaches. Wish I was one of those people. Sorry there are so many of us with these type of headaches and so few people that understand the pain they cause.
How do you explain the pain to other people who have no clue what a CH is? I read somewhere that one lady described the pain as being worse than natural child birth and one man said it was more painful than having a limb amputated without anesthetic... sounds like minor pain LOL...
I guess thats all for now, thanks for listening/reading.
Phil

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bejeeber

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Re: newbie to forum not to CH
Reply #1 - May 22^nd, 2011 at 3:58pm

Hey Phil,

Glad to have ya on board, and glad that at least so far your attacks sound like they're pretty predictable.

Some members here have reported that they've been able to prevent those night time hits with 9 to 21 mg of melatonin before bed.

Some other popular preventatives are:

The very powerful clusterbusters approach, with some reporting success with mild (and legal to order, possess) Rivea Corymbosa seeds. Here's a Newsweek article about clusterbusters:
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Then there's the much newer phenomenon on the forum here - a high dose vitamin D3 regimen that some are reporting knocks their CH's out cold. This is the forum topic where it's being discussed:
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Guiseppi

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Re: newbie to forum not to CH
Reply #2 - May 22^nd, 2011 at 7:58pm

Jeeber has given you some great advice, so I'll pile some more on. If your wife's oxygen concentrator helps a little.......you are in for a treat. I'm 51, a 33 year sufferer, episodic. Oxygen will abort an attack for me in as little as 6-8 minutes, that's completely pain free with that euphoric "yes it's gone" feeling. Read this link as it must be used correctly or it won't work.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

The main keys are a high flow rate, at least 15 LPM preferably up to 25 LPM, a non re breather mask, and get on it as soon as you feel the familiar tingle. It's really been sweeping the board, cheap, no side effects, FAST, hard to find something to hate about it!

Do you use any type of a prevent med? Verapamil, Lithium, Topomax, a med you take daily while in cycle to reduce the number and intensity of your hits? On cycle I use 1200 mg a day of lithium, blocks 60-70% of my hits, 02 handles the rest with the rare imitrex jab when I'm getting creamed. Are you working with a headache specialist neurologist? We see the best results from them as GP's know very little and garden variety neuros don't know much more.

One more thing to try, energy drinks. Red Bull, Rock Star, any with the combo of caffiene and taurine. Many can abvort or really reduce a hit by chugging one of those at the onset of an attack. I drink one while I'm aborting with 02, seems to speed the abort and push back the come backer attack.

Welcome home, glad you found us, hope we can help you.

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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cigarman

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Re: newbie to forum not to CH
Reply #3 - May 23^rd, 2011 at 12:13am

Hey guys, thanks for the info
i went to 2 gp's first , the third was internal medicine, (first 3 were clueless) the 4th was also internal medicine. He listened to my symptoms then said he would back in a couple of minutes. When he came back he said i had described all the symptoms of cluster headaches, I was impressed. we went through all the ergotamines (sp) and drugs he could come across. none helped. one ( i forget the name) really seemed to work but i had an allergic reaction. I started getting a red stripe up my legs from my knees to my groin. I thought i had blood poisoning. Luckily it wasn't. he was ready to put me on Lithium but he had just prescribed the imitrex nasal and that seemed to help. I take 3-4 Fiorinal #3 a day (30 mg of codeine). that is the only thing that seems to help with other kinds of headaches I have. i also think it helps in the time between cycles. It took a long time to realize that i had better take the Imitrex as soon as the twinges started. I finally got my insurance co. to approve getting 18 doses per month instead of 6. Like 6 wouldn't even last a week. so i keep stocked up so now i never run out. That stuff was expensive even with insurance but i learned the hard way it's only money....As for the o2 machine it usually does the trick. It did tonight, got to it early.
it was one of those days where my head was sore all day long from last nights headache. at least a 12... on the scale..does everyone have the hangover type of sore head .. that's almost as miserable as the headache. not nearly as painful but lasts all day. and it makes it harder to feel the first twinge of a full blown CH coming on.
I'm going to go look for some kudzu tomorrow. maybe that will help.
I read that mushrooms would really help.. I'm wondering if it's the same as what i used to pick in the cow pastures. sounds too good to be true..LOL yeah I'm an old stoner from the 60-70's. but not any more due to our wonderful drug testing policies..
When i first stared having CH's i was taking Melatonin cause i could never sleep. that helped my sleeping but didn't seem to help with the headaches after they started. Now i just take Valium and sleep like a log unless the kiss of doom wakes me up so rudely..
It's really odd, i had a cycle back in March and early April, then it ended. now last week I started another cycle. usually once I'm through they are gone till the fall. It seems like when the temperature changes from hot to cold or cold to hot is when i have cycles now. I'm just not used to having 2 cycles back to back since the all year long cycles ended about 10 years ago.
Great to be here and thanks for the info.
sorry about the rambling, I hope this makes sense. still a little dazed and confused from this weekends Ch's.2 Thursday , 1 Fri, 1 Saturday, 1 Sunday. Thursday and sat were at the top of the scale and tonight's only got to about a 4-5. I guess I'll try to get some sleep now and hope i don't get awakened again tonight. i also guess I'm lucky that i only have 1 or 2 a day for 6-8 weeks at a time. I've read about people having 6 or more a day. I don't think i could take that.
thanks again.

Phil

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bejeeber

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Re: newbie to forum not to CH
Reply #4 - May 23^rd, 2011 at 2:12am

Hey Phil - yep those are the same exact mushrooms.

The typical melatonin dose for sleep is around 2 to 3 mg. For CH night hit prevention, it's upped significantly to more like 9 to 21 mg.

Not saying it would work for you, but it sounds like you may not have tried the higher dose yet....?

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Guiseppi

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Re: newbie to forum not to CH
Reply #5 - May 23^rd, 2011 at 9:29am

Yes it's the same fungi! If you are intersted in going that route, there is a pretty strict routine you have to follow, in order to enjoy the incredible success others have. Click on this link, our sister board has done an awesome job of compiling all the info you'll need in one place.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Joe

edited for crummy spelling!

« Last Edit: May 23^rd, 2011 at 9:30am by Guiseppi »

"Somebody had to say it" is usually a piss poor excuse to be mean.

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Bob Johnson

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Re: newbie to forum not to CH
Reply #6 - May 23^rd, 2011 at 11:06am

From what I understand you still do not have a doc who knows how to treat the complexity of headache. Given the fact you don't know, for sure, that you have Cluster (there are a bunch of conditions which look like Cluster but which are not, some of which are quite serious), I'd suggest that you find a headache specialist.

Starting over with a good diagnostic work-up is essential before you start making treatment decisions yourself.

The use of pain meds is a bad step with headaches of any type and there are a variety of effective meds to both abort attacks and others to reduce/stop the attacks.
==========
LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

Bob Johnson

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RichardN

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Re: newbie to forum not to CH
Reply #7 - May 23^rd, 2011 at 11:30pm

Hi Phil & Welcome to Clusterville

Another geezer here . . . I'm 64 and have been chronic since 1/01 (after I nailed my noggin pretty hard . . . am a "head trauma" CH'er . . . I think about 16-20% of us if I remember correctly). When my wife found this site for me 2/02, was having 6-8 attacks daily, sometimes 3-5 at night, most Kip 5-9, 20-45 min and the occasional 1 1/2 - 2hr + horror.

This place gave me the info to take to my doc and finally get a diagnosis and DEMAND (had what still ranks as my worst attack the day before) a script for Verapamil, 02 and Imitrex. Had already had CTs, MRI (which will come back "normal" if CH). He relented on the Verapamil and the 02 (low flow-rate and nasal cannula . . . which of course I corrected as soon as I got the script), but (correctly) refused the Imitrex script because of previous heart issues. Had stress test, which showed some blockage, then heart cath that did show blockage, but not enough for a stint.

I mention the above because Imitrex is a major vaso-constrictor and if you have artery blockage or high cholesterol (as I do), can be VERY dangerous (as in heart attack dangerous).

The Verapamil gave me my first PF day in over a year when I got to 240 mg (had 3 attacks that night, but had the 02 to kill them) . . . got as high as 480mg, then back to a 360 mg maintenance dose. Many take much more and often in combination with Lithium or other meds.

4/04 had major surgery (removed bladder & prostate), followed six weeks later with 3 months chemo. After my surgery, the hits seemed to diminish in frequency/intensity, so prior to my chemo I quit several meds (including the Verapamil) . . . hits remained manageable with 02 . . . my conclusion . . . the water (see "water X 3", link on left). I am required to drink large amounts to keep my neobladder and kidneys flushed to avoid UTIs. The price is right . . . .it IS NOT easy to do

Am currently (mostly) PF . . . haven't had a real "dance" with the beast in over a year. Fourteen months ago started taking D3 (doc prescribed 10 or 20,000 IU per day for a month . . . have been taking 5,000 IU ever since. In 2010, used 30 "E" tanks . . . just put my regulator on #6 (for this year) last night. I will still get low level hits if I reduce my water intake or if I'm around my known triggers (alcohol . .. quit 2/02, exhaust fumes, certain chemicals like carb or brake parts cleaner), BUT they're all low level hits easily killed in a few minutes with the 02 (15 lpm regulator with an Optimask).

Am looking for further improvement when can acquire the Omega 3 fish oil capsules and calcium citrate (with zinc & magnesium).

One of my favorite mottos on this board is, "nothing works for everyone, but SOMETHING works for everyone, and here you have a good chance of finding the "something" that works for you.

Keep reading, keep asking . . . and know that we truly understand the pain of the beast.

Be Safe, PFDANs

(mostly PF) Richard

I can live with the beast as long as I don't have to "dance" with the bastard.

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