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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hello Headache people!
        
(Message started by: fullhead on Oct 11^th, 2004, 12:30pm)

Title: Hello Headache people!
Post by fullhead on Oct 11^th, 2004, 12:30pm

What a great website, huh?!

I was first introduced to the concept of "cluster headaches" in '94 while experiencing another horrible bout. Yes, I had initially battled it out with them several years before, but thought I was just having some major sinus probs (those bouts only lasted a couple of weeks). But in '94 after 2 solid monthsof pure Hell, I knew that I had unusual problems (Finally realizing maybe my pain threshhold wasn't that low after all). I thought I was going crazy!

During this time my parents took me to the Clinic and everyone felt that it could be the result of a car accident that I had in '89, in which I had been thrown from the pick-up and the top of my head was literally scalped (to this day, hair will not grow on that spot).

So after about 2 months, the Doc put me on a Dospak which knocked the cluster out and, Ureka - I've been healed!!! NO MORE HEADACHES!!!

Until I got married in 98. then the demons came back 9 months into marriage and everybody was asking me (without the presence of my bride) if STRESS could be a factor (I still was unsure of CLUSTERS).

During this time until even now (after I found this web site) I was convinced that these headaches were the same thing that everyone else got and i was overreacting to the pain! "Just go into a dark room, take 2 aspirin, lay down and put a hot rag on your forehead." Yeah right - you try laying down! I CAN'T LAY DOWN - IT HURTS TOO BAD! So i would pace around going bonkers for a couple of hrs. and then after the pain was gone, everything would be back to normal - like Dr. Jekl and Mr. Hyde. Then I would feel totally humiliated for overreacting to my "low pain threshhold" (a doc actually suggested that to me).

After my bouts in '98 and 2001 (the last one lasted for 4 months!!!), I came to discover cluster headaches. And this time I've discovered this website - WHAT A GODSEND! I THOUGHT I WAS ALL ALONE!!!!

Now, after over 3 yrs. of peace I'm on my 2nd Dospak and everything is heavenly, but I dread and despise the truth. I'm not even sure if I should be taking this dospak - I finished my first one last Fri. and got hit again Sat. night and Sun. morn. 3 x within 8 hrs!!! I have a friend who is a pharmacist and he got me my 2nd pac. Any suggestions would be helpful. Plan to try Oxygen and water treatment, but I noticed most of you encourage a neurosurgeon. the reason I haven't pursued that is because I've been to 3 physicians and have learned way more in my own studies than from them. Amof, they didn't know anything about clusters!

Anyway, sorry for such a lengthy intro - no doubt you'll be seeing me again soon.

Thanks for any input!

Title: Re: Hello Headache people!
Post by karma on Oct 11^th, 2004, 1:19pm

A neuro will confirm or eliminate any other problems that may be casuing you ha's. If he is good he will be knowledgable about CH and will expalin all the options available to treat the problem.
Its best to learn as much as possible and ask questions about all the treatments.
Oxygen has been a savior for allot of people but the proper setup is critical

Title: Re: Hello Headache people!
Post by Ronny on Oct 11^th, 2004, 4:00pm

Hi there,

Glad you've found this site.
As karma already pointed out, did you see a neuro?
Take a look at the left, lots of great info there.

Ronny.

Title: Re: Hello Headache people!
Post by EmpressJMB on Oct 11^th, 2004, 6:42pm

Welcome Fullhead. No, your not alone. I thought I was too until I found this site. For some reason it helps to know that others understand what your going through.
Alot of Dr's don't know about CH or understand how to treat it. See a Neurologist and get a diagnosis. If it is CH then it will be up to you to be proactive in making sure you get treated properly. Read, read, read! There is alot of great info here and links to more. :) Janet

Title: Re: Hello Headache people!
Post by Kris_in_SJ on Oct 11^th, 2004, 9:20pm

Hi,

Sorry you have to be here, but I'm glad you found us. There's nothing better than communicating with others who truly understand.

I'm not sure what a "Dospac" is - maybe Prednisone?

If so, it's one avenue of attack, but it needs to be combined with a good abortive like O2 or Trex, and a preventative like Verapamil in order to be successful. Here's my favorite treatment link. It offers some of the most up-to-date info available on meds for clusters. Print it out and take it to your doctor.

http://www.future-drugs.com/admin/articlefile/ERN020304.PDF

Unless you have an empathetic GP, willing to listen, read, and try out what you bring, I'd still recommend consulting a neurologist (not a neurosurgeon) who specializes in clusters. The fact is ... when you're episodic, you have some real quality PF time to look forward to. Unfortunately, the beast WILL be back. You want to have someone working with you when it happens.

Best wishes for PFDAN!

Kris

Title: Re: Hello Headache people!
Post by TxBasslady on Oct 12^th, 2004, 1:01am

Welcome to the board.

Melatonin is good if you get the nightime hits. It's cheap and you can buy it OTC at Wally World or any drugstore.

It has worked great for me. I get hit always at night..about an hour to hour and 1/2 after going to sleep. I take 2 pills (3mg. each) about an hour before bed. Another thing that has helped me and alot of others is sleeping in a reclined position. A recliner or propped on pillows on the sofa.

There are lots of meds and remedies....unfortunately you just have to see what works for you.

Hope things gets better for you.

PF vibes,

Jean

Title: Re: Hello Headache people!
Post by fullhead on Oct 12^th, 2004, 7:38am

Karma, Ronny Janet Kris & Jean,
Wow! thanks for such an immediate and helpful response! It is wonderful to known that you are here with me and I can definitely see how this website can be "addictive"
Yes Kris, the Dospak is Prednisone or Methylprednisolone (same thing?) When I take it, life is amazingly normal - no pain! My mom remembered it from my first big bout in 94 and my wife has access to the stuff through her severe alergy probs. Thanks for the advice (what is Trex? ) We were wondering: is the Prednisone beneficial to the process of healing, or does it simply prolong the bout? Last time the demons hung on for 4 long months (ruining my whole summer), and I had taken at least 4 prednisone paks during that time (thankfully my pharm friends knew not to let me stay "hooked up"). Another question: how long and how much pred is safe? It seems to be the only thing that works for me - Imetrex worked at first, but then the demon got stronger!

The reason I've yet to visit a Neurologist is probably because I've had access to meds through a couple of pharmacist friends and I'd hoped to avoid financial pain (this is all the pain i can take!) But my wife and family agrees with you all - no amount of $$ could pay for proper treatment and health, especially when this desperate for anything! Get ready, Iins. premiums! Hopefully I'll discover some of you in the OKC area who would recommend a local neuro and who knows about CH!

Funny you should mention the sleeping position Jean, that's exactly what I did in the past but I eventually deleted that hypothesis. Guess instinct was right after all!

Maybe I'll find out in my research, but are there other vitamins or suppliments? Thanks for the Melotonin adv., dad uses that to sleep. From what I've read, I think i need to cut out the calcium intake and double up on potassium. I used to mistakenly use feverfew, a herbal blood thinner until I read that these herbals can activate the CH...

thanks again!

Mark

Title: Re: Hello Headache people!
Post by EmpressJMB on Oct 12^th, 2004, 8:24am

Hi Mark! I just want to add to be careful with the steroids (prednisone). It's best to have that overseen by an MD. It has serious side effects if not used properly. Trex is Imitrex. Have a PF Day! Janet

Title: Re: Hello Headache people!
Post by Valerie on Oct 12^th, 2004, 9:29am

Welcome to the board!

It can sometimes take months to get a neuro appt so call TODAY. Sometimes if you tell them you're a cluster patient they will get you in sooner (if it's a really good doc).

Best of luck to you :)

Valerie

Title: Re: Hello Headache people!
Post by fullhead on Oct 12^th, 2004, 5:45pm

Janet,
Thanks - I've used the trex - it did indeed work better than anything else (besides pred.)

Valerie,
I've emailed about 20 locals around OKC whose names were listed on this website concerning a neuro they'd recomend. Am still learning about this great website...

Thanks DJ!

Thanks to all!
Mark

Title: Re: Hello Headache people!
Post by thebbz on Oct 13^th, 2004, 7:26pm

Hello Mr. Head, ;;D ;;D
Need a referral to the neuro. Its worth the investment. Some neuros are somewhat uneducated as to CH as well as GP's. Many of us have been to several before sucess. Prednisone is a double edged sword. Try to find something with less side effect. Study ,check out the OUCH site as well. Knowledge is power. Sounds like your off to a good start. :P
BB

Title: Re: Hello Headache people!
Post by fullhead on Oct 13^th, 2004, 7:44pm

BB,
thanks, yeah, I realized that i'd have to go to the regular Dr. before I could get into a neuro. That's the prob. - I guess the flip side is that maybe the Ins. will be more likely to cover the meds...?
The pred. works like a charm - I hate that there's so many side effects...
Would muscle spasms be one of them? I've had a few in my legs today...
mark

Title: Re: Hello Headache people!
Post by LeLimey on Oct 13^th, 2004, 7:55pm

Quote:

From what I've read, I think i need to cut out the calcium intake and double up on potassium.

I was on Prednisolone from Feb until Aug for a different condition and I had big BIG problems with calcium and potassium too. I was in hospital and being dosed differently daily with twice daily blood tests and I still managed to end up on a calcium drip and having my heart monitored hourly as I was so dangerously low on calcium. They do have a see saw effect on each other anyway and it needs to be quite a fine balance between them (added to which potassium tastes vile.. eat bananas!!) Don't mess with them without having blood tests as being low on calcium can cause heart failure. Good luck with it all!
Helen

Title: Re: Hello Headache people!
Post by thebbz on Oct 13^th, 2004, 8:00pm

Yep,muscle spasms, joint problems, and on and on and on. You might find yourself baking cookies at 3:00am and fighting for the last piece of chicken LOL. ;;D [smiley=laugh.gif] It is best to find some alternative that works for you. ..still looking myself.
BB

Title: Re: Hello Headache people!
Post by Kris_in_SJ on Oct 13^th, 2004, 8:56pm

Hi Mark,

If you have pharmacy friends, then they should tell you about the many, many, many possible side effects of Prednisone.

I urge you to read the information on this link. Print it out and take it with you to your doctor's appointment (which you are going to make, right?).

http://www.future-drugs.com/admin/articlefile/ERN020304.PDF

Imitrex injects (or O2) are a true wonder, along with Prednisone, along with a good preventative med. Be informed and be well (as much as possible anyway).

Hugs,

Kris

Title: Re: Hello Headache people!
Post by TxBasslady on Oct 13^th, 2004, 10:51pm

Mark,

Usually Prednisone is administered as a taper. I took 60mg for 3 days, 40mg for 5 days, 20 mg for 2 days, then 10 mg for 5 days.

There are some real horror stories about Prednisone. High dosages can destroy the immune system. When that happens, then you have problems far worse than CH.

Definitely be cautious w/the Pred.

I had 197 days totally pain free with my Pred taper. For alot of folks, the headaches return when they complete the taper, so I guess I was extremely lucky.

Good luck....keep that head elevated...and try the Melatonin, if you want too. I swear, it's a miracle drug!

PF vibes,

Jean

Title: Re: Hello Headache people!
Post by Giovanni on Oct 14^th, 2004, 5:58am

As Jean said above Prednisone can be very dangerous if not administered properly with a taper--be careful with that one. The neuro that you get should specialize in "HEADACHES" otherwise you might get one not that familiar with cluster headaches.

Some herbal remedies are: melatonin 6-12 mg one hour before bedtime (I take 9mg); CoQ-10 at 300 mg per day, B-complex vitamins 50mg X 3 per day; one multi vitamin; magnisium around 250 mg (I believe); several cups of green or black tea per day; some people use 5-HTP 50 mg X 2 per day in combination with the above; B-6 at around 200 mg.

Imitrex stat dose injections would work with me in less than 5 minutes (when I was taking it).

Oxygen at the set up to your left works with about 70% of us to some degree.

Please check the internet for any possible adverse reactions to the above before trying. The 5-HTP can not be taken with anti depressants.

Good luck and keep us informed.

John

Title: Re: Hello Headache people!
Post by fullhead on Oct 14^th, 2004, 12:03pm

Thanks for your input everybody! Ok, so I'll make this my last pred. pak then I'll stip for awhile. Since i haven't had a bout in over 3 yrs tho, I felt maybe I could take really good care of myself during the off season if I do have to go back to my beloved drug...
I'm going to definitely get the Melatonin and the B-complex, but the tea is caffeneinated and that's out for me!
I found a compassionate soul here in OKC who is going to divy out his leftover stash of zimog - what a blessing!
mark

Title: Re: Hello Headache people!
Post by BlueMeanie on Oct 14^th, 2004, 7:30pm

Welcome Fullhead,

I've read too many horror stories about the Pred treatment. I suggest, after talking with your doc, to try Varapimil for prevent. Seems to be a better choice.

02 is definately worth trying. Make sure you read the 02 info to the left of this page. It requires a high flow regulator a special mask to work correctly.

Imitrex (injections or spray) are no doubt the best Abortive. You have to be sure you have no blood pressure or heart problems first though.

Read as much as you can and be prepared when you visit the doc. Sometimes your persistance is the only way to get what you want. After all they are smarter than you. ;)

Title: Re: Hello Headache people!
Post by fullhead on Oct 15^th, 2004, 8:53am

BlueMeanie,
Am working on getting my lungs hooked up to some good ol' 02 (w/so much of it around, you'd think this would be easy)
thanks for the advice!