Hello all.. I am Dave, 40 years old from Massachusetts. I can't believe there are so many others out there like me.  REading this stuff makes me cry! I have been sufferering from these things on and off since I was about 17.  My doctor diagnosed me about 20 years ago when I was in a cluster period, did little to help me and told me I was lucky my periods are sporadic and not chronic.

For me, the pain comes on 99% of the time about 45 minutes after I go to sleep.  Like all of you, I leap out of bed and the pain is so intense I pace, yell, flop and tend to squeeze the back of my head / neck as hard as I can.  No meds have ever worked, though I haven't tried any of the latest things.  For me, the only thing that gets me relief is when I literally cover the entire right side of my face up to my forehead with ice and leave it there until my face is completely numb. sometimes if I do this off and on for 15-20 minutes the damn thing will go away.  Otherwise, it's usally a minimum 2 hours thing before the thing starts to subside.

Aside from ice..  are there any other good suggestions on what you do?  I have heard a strong blast of caffeine works, but getting them typically at about midnight, I haven't tried this..  I am in the beginning of another cluster cycle which meand another month or 2 of this daily, so I will try anything.  Thank you all so much!  this board is great and I look forward to reading everything.

Welcome to the board Davey, the good news is there is a LOT of good stuff available now to keep ya from hurting.. .. I’ve had CH for 35 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

This link will show you how to get set up with welding oxygen:

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.

You mention most of your attacks are the nocturnal variety. Many have found they can reduce or even eliminate the wake up call attacks with Melatonin. It's an over the counter sleep aid available at health food, vitamin or drug stores. Start with 9 mg about 30 minutes before bedtime. May have to adjust the dose up or down, up if it's not helping, down if you're a zombie in the morning. You might have to play with it a bit, some get the best results by splitting the dose in half between slow release and standard release. Standard release to get to sleep, slow release to get ya thru the night.

Follow this link  to the medications section of this board and read the post "START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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 healthy for you even without CH!

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

Hi Dave and welcome

Your reaction of crying as you first read the forums is identical to mine and so many others. It is amazing to find out that you're not all alone and that other people out there understand what you go through.

From your post it seems that the medical care you've got it pretty much nothing other than trying to get by using ice. This isn't a great regime for dealing with CH. What you need to do is to find a headache specialist to work on a good treatment plan for you to cover a preventive (to minimise how many CHs you get) and an abortive (to kill off CHs).

For a preventive this will typically be verapamil / lithium / topomax with a prednisione taper for about 10 days to act as a short term preventive whilst the longer term one builds up.

Also do look at how many of us have been using vitamin D3 with great success - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

For aborting CHs, I can kill off mine in about 5 minutes using oxygen with a non-rebreather mask and a high flow rate (25lpm) with no side effects. This is certainly a lot better than a 2 hour ride as I've done both and there is no way I want to go back to them. Injectable imitrex will also abort in a similar time, however it's expensive and has side effects.

For now try chugging an energy drink with taurine / caffeine (like Red Bull or Monster). It will help cut the duration and intensity of the CH.

Keep reading like mad and you'll learn so much about CH.

Also, here's a listing of some docs other CH'ers have used and recommended in the Mass. area. Might be worth hooking up with one of them to try some new treatments.

Boston:
Dr. Elizabeth W. Loder
Brigham and Women's/Faulkner Neurology

Dr. James Arthur Morrill (PCP)
Massachusetts General Hospital

Lawrence:
Dr. Andreas P. Schoeck
New England Neurological Associates

Lexington:
Dr. Peter J. Zuromskis
Beth Israel Deaconess Healthcare- Medical Care Center

North Easton:
Dr. Albert Ackil

Norwood:
Dr. Bryan Lieberman

Weymouth:
Dr. Paul S. Blachman

Joe

Ok, kiddo... before bedtime take some melatonin (5-15mg) This helps get you thru the REM sleeP (which hits about 45-90 minutes after going to sleep). It may take a few days to get in your system, but has been great for stopping nite hits in a lot of us. Worth a try.. you can get it at any pharmacy or most grocery stores in the vitamin isle.

Red Bull (or other energy drink) at the first sign of a HA will sometimes abort it.

But the thing that has worked for MOST of us is O2 at a high flow rate (15-25 liters per minute) with a NONrebreather mask (or one that's in the CH.com store - it's better than what you get from the O2 supplier). Grab the O2 at the first sign of a hit and hyperventolate .. it's proved one of the greatest abortatives for about 70% of us on here. (I'm chronic and swear by it).

One thing is to find a doctor who will work with you. You'll probably have to do the research for him/her, but you need one who will listen to you and try to help you. If one don't - find another one who will. Most of us have been thru several before we found the right one.

Nothing works for all of us and there are a lot of things out there .. imitrex is the abort of choice around here. The nasal spray works pretty well, shots are better and th epills are useless.

As far as prevents.. I use zonogran and it works for me (not for many others) Lithium and verapamil work for several and others use other things. We all react differenly to meds so it's trial and error. You just have to find what works for you.

But see your doc about the O2 -- read up on it on the left BEFORE you go to the doc so you can tell him WHY it works. And get some red bull.. Coffee is good, but Red Bull works better.

Let us know how you're doing. We're here to help and we've all been right where you are so anything you say - we've been there and UNDERSTAND.

Welcome to Clusterville. Sorry you're here, but glad you found us..  :-*

OMG, thank you all so much!!!  You have no idea how good I feel reading this..  HOPE!  Actual HOPE!  Like, I feel so stupid for suffering so long without trying much, but feel so great there is hope and things to try..  Finding this board may be my luckiest day of the past decade (besides my kids being born I guess!)

Like you all know..  there are so few people with it.. that no one understands!  for years, I thought I was weak and low tolerance to pain..  about 5 years ago I broke an ankle falling on a ladder and the doctor was in shock I walked into the ER after driving myself.. I honestly think my pain threshold was built on these cruel horrific bombs we suffer from.  The ones that have me scared to go to bed, scared to do a lot of things.. 

One other question..  I noticed when I am in a cluster cycle there is one thing that brings them on almost 100% of the time (so hence, I stopped).. When I am in a cycle, it's almost always middle of the night bombs.. but if it's in a cycle and I do rigorous exercise (I typically use the treadmill or stairmaster at a gym)..  a crushing headache is amost immediate.  Like I'll get in the shower and by the time I get out my right eye is swollen 95% shut and my nostril is running and the pain is piercing..

I have read nothing about this happening, and because I am nuts, a few days ago even though my cluster cycle started last week I went and did a light 30 minute job on the treadmill at about 1pm at lunch.  Again, didn't even make it out of the locker room before I was debilitated.  I spent the next 90 minutes pacing around the streets of boston drinking Mountain Dew holding ice to my head. 

Has anyone else experienced this?

Has this ever happened

A LOT of people post that on cycle, excercise is a trigger for them. Triggers really seem to vary by person, with alcohol, strong smells especially petroleum, and relaxing or stressing, being more common ones.

You've hit the mother lode of CH information, stick around, read like crazy, in short order you'll be educating your medical care providers! ;)

Joe

There are a few things that tend to trigger CHs. For most people in cycle, alcohol is something to avoid as it can guarantee a hit (some are lucky in that it doesn't). Other triggers are not as frequent but they can be things like stress level changing (either increasing or decreasing), smell of organic solvents or fumes, getting too hot, exercise, missing meals, getting dehydrated and similar things.

It's fairly rare for any food to trigger CH, but not impossible. If you keep a headache diary then you may be able to identify if it is a trigger for you.

Welcome Dave!

I am fairly new to this site as well. It was definitely a godsend. Just like you, I cried when I found this site. I will say this with all modesty. The people here are the BEST people I have never met. Everyone is so helpful and are all concerned about everyones common ailment.

Like you, I didn't really have any prescriptions to help relieve my pain. Actually, I didn't really know much about CH's until I came here. Coming here has given me a BA in Cluster Headaches. I'm working on my PHD. As you must have read by now. Keep in mind that remedies differ from person to person, and the beast tends to mutate. I for one and leaning towards the Vitamin regimine and looking to get O2.

A little about my CH's. I typically am on 2 year cycles. Mine usually hit June or Julyish and last for about 3-4 months. My last cycle was the worst ever. I get mine at night and they are usually 7 or greater, and lasting 30min-1 or 2 hours. Its also not uncommon for me to get hits during the day, but they are usually not as intense and are considerably shorter in duration. Most of the time I can work through them.

Shadows for me are probably the worst. I hate the helpless feeling of knowing an imminent hit. But when they don't come.....it sucks. Not that I want the hit, I just want it to attack so I can get past it. Occassionally I'll get a "rogue" during remission, but seldomly are they greater than a 7. I have been hit with 4-5 CH's a night that are 8 and greater. This usually is at the peak of my cycle. Oh and I'm sure that I don't even need to explain the fear of sleeping to you!

What really pulls me or us through are our supporters. Without them.....some of us may not be around today. My girlfriend had to watch me get hit time and time again only to feel helpless. She wanted so bad to comfort me and of course there isn't anything they can really do for us. (You know the routine) when I found this site, I let her read some of the posts and stories, and it really helped assure her that she was being as helpful as she could. Its so hard for others to comprehend our suffering, because they have a hard time believing that pain can be this intense. One thing that hurts almost more than the HA itself is to see their looks of deep concern when they see us in this pain. Perhaps that may be one reason that we want to be alone.

Please don't hesitate to ask ANYONE here any question. No matter if you may think its a "stupid question". Everyone has been so welcoming to me here and I'm sure they will extend the same welcome to you. And YES! You are NOT alone!