Hello all!
My name is Cristina, and I just found this site at 4:00am during an attack... I was trying to distract myself, and the cat seemed to be sick of watching me pace around the room. I have had CH since I was 19, and I am 27 now. At first, I didn't know what the hell it was, only that it was the worst headache I had ever had. It was only one episode, and believe it or not, I got rid of it with a dissolving Excedrin (they don't even have those anymore).

After a few more CH here and there, I finally broke down and went to the doctor. I expected him to order an MRI or a CT scan, or something... Not so. He told me I was getting migraines, prescribed me Frova, and off I went.

The Frova worked for a while, however, having no insurance meant that it was $20.00 per pill... That didn't last. After the free samples the doctor gave me, I was alone in my battle. It was just me and Advil, waking up at 3:00am and trying to distract myself by watching whatever was on TV at the time (Pink Flamingos).

When I could finally afford (barely) to get insurance, I had to lie about these pre-existing "migraines", as they would have surely turned me down. The next doctor I saw said the same thing, "migraines". But I had come to know people with actual migraines... They didn't always have the same side affected, they didn't get s stuffy nose on that side, and they didnt get them every other day and then every day, so wtf???

As I started working towards becoming an RN, I grew more and more curious... I researched online, even though I know it's not always credible. But what I found about cluster headaches was EXACTLY what I was experiencing, to a T. Of course my doctor insisted I just had "migraines". But I was exited that I finally knew what was up, even though she didn't. And that I wasn't dying from some kind of brain tumor.

I suppose I should go on to describe my "demon" for you guys, so you know I'm not full of it haha. It starts on my left side, behind my eye. It usually starts dull, or as a shadow, and this is the time that I need to take medication, otherwise I'm screwed for like 2-3 hours. The pain is so intense that I literally want to die. I'm rolling around on the bed or on the floor, and I wrap my arms around my head and squeeze as tightly as I can. It feels like an extreme brain freeze right behind my eye that won't stop. Usually when a cycle starts, the CHs occur every other day, like clockwork. After a week or two, it's every day. Then maybe several times a day. Then they're gone. And each cycle lasts about a month to a month and a half. It seems to be more prevalent in the summer and winter months, or during an extreme weather change.

Currently I'm taking Maxalt MLT. They taste like crap but they work in about 30-45min if I take it in time... I have read about the oxygen therapy, and would love to try it. But I still have not even been diagnosed with clusters, and no one listens. I was given Imitrex just last week, 100mg tablets... Unfortunately they did nothing. And then just last night I found you guys, while in the throws of another demon. As the sun came up and the demon finally left me, I looked at this website more and more... It totally fits my personality and humor, plus I know that I am not alone, and that unfortunately, there are many sufferers just like myself, who are not understood by anyone.

I really look forward to meeting you guys and sharing with you. This is the first time I have ever been a part of a group like this, so I'm exited to try it.

That's about all for now :)
Cristina

Hello and welcome Christine,

    If you could please put where you're from in your profile, like I ask all newcomers to do maybe we can help you find a doctor in your area that has more sense than to tell you, you have Migraines.   >:(   diagmnose you correctly and get you on a treament plan and send you off with a script for 02.

Maxalt shouldn't take 30 to 45 mins to work.  I'm wondering what dose it is.  If you read the 02 link in yellow to the left of here about using pure oxygen to abort, you will realize it is one of our most cherished ways to abort an attack.  If I can get on it at the first twinge, I can abort in less than 10 mins.  A preventative like Verapamil or Lithium can make a big difference in how many attacks you get as well as how severe they are.

All this is of course dependant on a good solid diagnosis.

We're here to help you in any way we can Christine.


Linda

Welcome to the board Cristina. A future member of our medical community who suffers from CH. Your opportunities for educating the uneducated masses of doctors are endless! ;) We have seen the best results from working with a headache specialist neuro. As Linda said, let us know the area you are from, maybe we can give you some referrals for a doc in your area familiar with CH. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go to the meds section of this board and read the post, "123 pain free days and I think I know why"   It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

Clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Hello my name is Jacob i'm also new to the site well I guess I'm new I've been reading the boards for more than a year now just never signed up until 2 days ago, after I had a really bad attack.  Thought I'd say hi since you seem to be about the same age as me.  I'm having a tough time dealing with these I've been in isolation (my house) for the last 2 1/2 months because I'm scared to leave because I might get a you know what.  I only venture like a mile or so out so I can get home fast enough not that it really matters I just dont want anyone to see me how I am when I get hit by one ya know?

Anyways, I hope your not having to many CH's and things are under control.

Woops I didn't say I know I look really young in my picture but Im 25 got the demon when I was 14 then when I was 19 they came back and started comming back every year or so around July for 2 or 3 months.  So far the last 2 years in a row they've plagued me.

Enough hints in your msg to suggest the doc is not up to date in treating Cluster. If you can swing it, get a specialist. Too many folks take years to find a capable doc so start off on the right foot.
---
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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.

Hey all!! I'm sorry I haven't replied in a while, life has had me busy. I graduated from nursing school and found a side job for the summer. Also, I finally got to see a neurologist! I got my actual diagnosis with CH, and she decided to start me on Verapamil once I start another cycle. Well guess what, this lucky girl had to make a trip to the pharmacy today. :( I just really hope it works. Also, I'm going to try Imitrex nasal spray. I will keep you guys updated on how it goes. Thank you guys so much for your support thus far, I know I'm gonna need it!

So sad to hear you were finally diagnosed with this demon...but so happy that you are here with us!

And "omgosh!" Congrats on becoming a RN.  Nursing isn't an easy job, but I commend those who make it.

As for the Verapamil, it is one of the top preventives for CH.  If you attacks get worse, call your neuro and see if you cannot get a Prednisone taper.  The taper should cover you through until the Verapamil begins working.

As for the Imitrex spray, I don't have a lot of experience with.  If they do work for you, awesome.  If they don't work for you, try to get switched over to the auto injector of Imitrex.  My husband currently uses the the auto injector and it has been a life saver for him.

Keep us updated, there is a wealth of knowledge on this board.  Plus a couple of us Supporters who are just as knowledgeable...who else is gonna remember when the Beast thinks it's time for a waltz?  :D

Hey Akina! Yeah, I totally what you mean. I was bummed to find out that for the rest of my life, I'm going to be plauged by this Demon. However, I'm really grateful that I found this site. No one ever knows what I'm talking about when I say I have CH's. They're always like "oh I have migraines too." Ha. And yet they can function with them. Not to say theirs aren't painful, which I'm sure they are... But they don't come close to CH I'm sure...

Thank you!!! I'm so excited to finally have graduated. It's been a goal of mine for quite some time! :)

I start taking the Verapamil tonight. I'm kind of nervous, but I'm anxious for things to get better. As for the nasal spray, I haven't tried it yet, thank goodness I haven't needed to... But I will update on here when I do! Thank you so much for the support... It really means so much! :)

I get migraines every once and awhile...I just take my headache medicine, curl up with a comfy pillow and sleep away the pain.  They hurt like hell for upwards of 24 hrs (had one last nearly 3 days), but sleeping always helps.  I couldn't even compare to what my husband goes through...

Slight warning on the verapamil: check your blood pressure regularly...if you have normally low numbers, this med CAN cause that number to drop.  My husband found this out the hard way...scared a couple of ER docs with how low it was getting! I think my husband has a resting pressure of 100/60 (might be a bit lower) and a resting heart rate in the 60s.  ER tends to flip out when your blood pressure drops below 90/50 and resting heart rate drops below 45...I wonder why?  (*snicker*)

And if you having a bum day, just pm me...I'm a SAHM, so I check in with the site regularly...always available to be a listening shoulder. :)

Hi Crissy

  So glad you finally got the diagnosis and are starting on a preventative. 

  I've been chronic since 1/01, wife found this site for me 2/02, after 13 monthis of misdiagnosis, non-working meds, MRI, CTs . . . was having 6-8 attacks daily, setimes 3-5 at night, most 20-45 min and the occasional 1 1/2 - 2 hr + horror . . . was a basket-case, always exhausted, always in fear of the next one.   And then this great family gave me the info to start having some understanding and control of this beast of ours.

  Supplied with several pages of info from this site I saw my doc and was able to obtain scripts for Verapamil, 02 (nasal canula and too low lpm . . . didn't care . . . had the script) . . . he rejected (correctly) my request for Imitrex as I have some artery blockage and cholesterol issues.   

  Re the Verap . . . as your dose increases, many have some problems with constipation (I did), but that's easily remedied with diet change or stool softeners.  And, as mentioned above, you need to pay attention to your BP.  I had my first PF day in over a year when I got to 240 mg per day (considered to be the minimum effective dose) . . . had three attacks that night, but had the 02 to kill them before the "dance" stage . . . it was a WONDERFUL day.  Got as high as 480 mg, then tapered back to 360 mg which reduced the frequency/intensity of attacks to a level I could easily abort (most) attacks with the 02.

  You really need to acquire a script for 02.  If used at the earliest onset of the attack, you can abort in minutes.  Insurance probably won't pay for it, but 02 is CHEAP (I paid $10 per"E" tank).  It's quick, easy, and most importantly EFFECTIVE for aborting attacks . . . add an energy drink and you'll abort even quicker.

  DO investigate the D3 regimen.  After eleven years of the beast, I haven't had an attack since mid-November . . . haven't purchased 02 since 10/13 and it's odd to leave the house without a tank in my vehicle.  I am one of the many who are finding this regimen to be effective.

  Be Safe,   PFDANs

     Richard

Hey all, thanks so much for your advice!!!
Yeah, I know about the BP drops and the heart rate changes... being a nurse, I always have to check those before ever giving a calcium channel blocker! Oddly enough the pharmacist didn't even tell me about it, lol. Go figure...

Well I started the Verapamil on Thursday night. So far so good. I didn't have an attack until this morning, only a moderate one. I only did the dance for about a half hour or so. Which is good for me, seeing as how they're usually an average of 2 hours.

I tried the nasal spray... I don't know if I just had a moderate attack, or the nasal spray didn't work. But it took a good 45 min for me to notice a difference, which doesn't seem right for a rescue med. And then it dripped down the back of my throat, wretch!!! I emailed my neurologist and let her know... God willing I get that golden ticket for some O2!

Akina, that must be complete agony for you to have a migraine for days!!! I'm so sorry to hear that. I know pain, I feel for you! I hope you have a good med!!!

And Richard, 6-8 attacks daily, I can't even imagine. I really can't. I'm so glad to hear that you've been attack free for so long though! And yeah, I really want that O2 script, that sounds like the quick fix that I pray for when I feel an attack coming on.

Thanks all for your advice and posts!! I'm so glad I have you all in my corner, and I'm glad I have people here that understand... I will post again soon!!!  ;)

Welcome to CH.com Crissy,

When using any Med to abort a CH attack, the longer we wait to use it the less likely we will abort, or the longer it will take.

Seconds are critical, we must not wait to see how bad it will get. This is true for Oxygen too. By the way, I abort 97% of my attacks with a good O2 setup. Pls read the "oxygen info" link at the left. Most Doc's are not up on O2 for CH.

Don

Hello again, all! And still, so sorry for my far and few between replies. I actually went a while without a lengthy attack until now. I'm at about 2 Demons per day, and I have taken it upon myself to increase the Verapamil dose until I get to the neurologist (soonest will be in May). I still don't have a script for 02, and I really wish I did. The Imitrex hasn't done anything for me so far, not the pills or the nasal spray.

Some good news, I finally got a job as an RN, which took almost a year of hard searching! And it's in an area I love, psych!!! So it's a lot of fun. What's not so fun is being at work and having the Demon sneak up on me. What's good is that I may be able to snag a non-rebreather mask when I finally get that 02 script.

The Verapamil worked quite well for a while! I haven't had a serious attack until recently. It's been a week and a half with one every day, now the last 3 days have been twice a day...

I just want to say thank you to all that have replied, I really appreciate the support. I am so glad to be a part of this group, even though I haven't been on in a while, it's good to know that you guys are in my corner.  :)

Hi Crissy
If you can, try the imitrex injectables. Apart from 02 they are every ones fave abort method. They are my new best friend and I never leave the house without them.
MIRACLE JUICE. They will abort the worst CH in 5 minutes.
Maz.