I am 34 and have just been diagnosed with cluster. I have had them as far back as 10 y/o. This last episode has been by far the most painful and most disruptive though. It has lasted around 6 weeks so far. It has come to the point where I can barely eat and I am so exhausted from the pain and the fear of pain I have had to have my ex husband, who I hate more than anybody on this planet, come and stay with me. Even though he has reluctantly done so, he nor does anybody else close to me understand what I am going through. They think it's just a simple headache...take some tylenol, you'll feel better, they tell me. I just want to switch heads for 1 simple attack and see what they say then. I know you guys understand. How can I explaine it to them where they can understand? Please help. Thanks.

Welcome  kdeen0201 and I am sorry you had to seek us out, however I'm glad you found us.

The general population as a rule does not understand and many never will.  The following letter may be of help to you however.
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Here are some other tips that may help you in dealing with some CH hits.  Aside from the following tips please make sure you check out the O2 page!

4-Way Nasal spray or Dristan 12 Hour Nasal Spray(helps with the annoying congestion),

Taurine and Caffeine drinks (RedBull if you like it) to help prevent a hit when you feel one starting,

Melatonin or an Allergy pill at night before bed to help avoid night time hits,

The herb Kudzu has helped a few as a prevent.   

Deep breathing through the milder hits can help too.

We need to know what you do for them. Do you take a daily prevent med? Verapamil, Lithium, Topomax? Do you have oxygen? Imitrex? These headaches do suck but there are a lot of treatments in just the last 5-10 years that are making them much more manageable. Give us a quick history and we'll see which way we can direct you. Hang in there.

Joe

I am now on Verapomil, maxalt and am on a steroid for some reason. I have used imitrex, relpax, zomig, folvra (?) dolgic in the past. I have read about the oxygen therapy and am very curious about it. At this point I would do just about anything to help with the attacks and the pain. Thank you BTW.

The steroid I suspect is prednisone? We use it as a transitional therapy, it provides a great block against CH for many while we wait the 10-14 days for our prevent to kick in. It is ususally not used long term due to it's side effects.

Verapamil is a very common first line prevent and many have had good success with it. If you're getting hit a lot it may be time to talk to the doc about upping the doseage. Some go as high as 960 mg a day, but do not increase it without dr's knowledge as it should be monitored.

Do read the oxygen info tab on the left. I can abort an attack in 6-8 minutes using just oxygen. Has all but eliminated my use of imitrex.

Joe

Sorry to hear you're getting slammed so heavily that you have to resort to having that most hated person in the world come and stay with you!  >:(

Between that report and the idea about switching heads, you do write a dark humor laced post that  is riveting!

Hopefully you can start aborting these $%#&%* hits sooner than later using the info the others have mentioned, found at the oxygen info link on the left of this page.

I've tried explaining to people that neurologists have deemed CH the most painful condition known to medical science, that it is also known as "suicide headache" etc., but I guess once the term "headache" is thrown in there people just generally aren't going to realize what's really going on.


kdeen0201 wrote on Aug 21^st, 2010 at 3:33pm:

At this point I would do just about anything to help with the attacks and the pain.

I think a LOT of us can relate to that!!

Here's a pertinent video talk by one of our fellow CH'ers about the often times very effective approach folks have been using lately for shutting down CH episodes over at clusterbusters.com. It has made all the difference for some so I think you owe it to yourself to learn about it:
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Hate that you had to find this site for yourself, but we're glad u did.  A lot of good info ine here as everyone has said and yes, it is difficult to deal with.  I am on week three.  They are manageable and sounds like you are on the right track with the verapamil and possibly prednisone.  Unfortunately there is no easier way to deal with these without a good way to abort an attack.  O2 works for most and is relatively cheap.  Imitrex injections as a backup for the one that break through. 

Seems to be a lot of interesting stuff over at clusterbusters.com.   ::)

Tell them it's like an ice cream headache only about 8 times more painful and lasting anything from 1/2 to 3 hours and happens several times a day .

this often helps because brain freeze pain happens on the same nerve set as CH and most people have experienced that .... if they haven't get them to drink a slushy really fast then they'll know  ;)

Oh BTW hello and welcome.

God bless

Nigel

Thank you everybody for the info and the support. I don't know how on God's earth this pain is meant to be bareable at times, but as I can see, you have all done it so I am sure I will find a way to also. I wish you all pain free days and nights. Thank you again.

kdeen - what part of the world are you in?

Hi Kdeen, sorry you are one of us but you now have a family here who understand.
I am a Verapamil user to prevent the hits, but needed to find the right amount for it to work. I am on 480mg daily.
I use o2 at 25 LPM with a O2ptimask (from the CH store to your left) to abort any hits that get through my barrier and like Joe and so many others I can abort a hit within a few minutes, if I get on it at the very first sign of an on-coming hit.
Others will be along soon to help, so pull up a seat and read all the info to your left.
Are you seeing a headache specialist such as a neuro?
  Barry

I live in the Dallas, Tx area and am seeing a headache specialist.

I have another question. I have just learned that the pressure that I feel behind my eye and in my temple is called a "shadow". Does anybody else feel this "shadow" almost "gaining strength" before another attack? I have almost felt quite psychotic about the different things that I have been experiencieng and feeling until I have done more reading and researching. ALthough not everything fits, most of it does and I can say that I'm glad it does...even if it does suck.

Folks here describe shadows all the time. If you look at the KIP scale info, the shadows are at the lower end of the scale. A shadow is a cluster headache, just lower on the scale.

I know my husband (Guiseppi) drinks a redbull (he prefers the sugar free) when he has shadows. Others may jump in here.

BTW there are a number of sufferers in your area. A group of them got together recently, organized by DallasDenny. There's nothing like meeting another CH sufferer.

kdeen0201 wrote on Aug 22^nd, 2010 at 11:16am:

I don't know how on God's earth this pain is meant to be bareable at times, but as I can see, you have all done it so I am sure I will find a way to also.

My attitude about it tends to be that it is not meant to be bearable - it's meant to be eliminated.

I think you'll find that the more tips'n tricks you compile here, then agressively implement, the less of this abomination you will have to bear.

bejeeber wrote on Aug 22^nd, 2010 at 3:58pm:

kdeen0201 wrote on Aug 22nd, 2010 at 11:16am: I don't know how on God's earth this pain is meant to be bareable at times, but as I can see, you have all done it so I am sure I will find a way to also. My attitude about it tends to be that it is not meant to be bearable - it's meant to be eliminated. I think you'll find that the more tips'n tricks you compile here, then agressively implement, the less of this abomination you will have to bear.

Amen!

Please hang in there - you WILL get through this...
:-/

While on Verap I stay clear of the Redbull. But I do take care of the heavier, persistent shadows with the o2, and am presently starting to slowly ramp back up on my Verap, new cycle is here...
My cycles last for about one year in length, 4 to 5 hits daily, all start into the evening and most after I fall asleep, those are by far the worst.. :'(
This time my remission was about two months, I will take what PF time I can.
Hope we can help  :)

kdeen0201 wrote on Aug 22^nd, 2010 at 1:58pm:

I have almost felt quite psychotic about the different things that I have been experiencieng and feeling until I have done more reading and researching. ALthough not everything fits, most of it does and I can say that I'm glad it does...even if it does suck.

I understand that feeling you describe, and you are well on your way to combating the beast with such a good attitude. Knowledge is the front line weapon against this thing...which includes a list of what has not worked and what has worked for you in the past. Keep a diary of the hits. Read for info and try what makes sense. Make a list of meds that you haven't used that have worked for others and ask your dr to prescribe them for you. Do not give in to despair but battle the beast constantly. GET ON O2 as quickly as possible, and read carefully the info on the equipment and techniques that help. Keep us informed, and God bless! lance

Welcome to the community kdeen!  Sorry you had the need to find us though!!

As Christy said, we've had a couple of meet n greets here in Dallas this year so check your PM's as I have sent you some contact info!!

Dallas Denny

Kdeen, just met Dallas Danny last week when he came thru San Diego. As a retired law enforcement officer I give you my guarantee he's safe to contact and is not an axe murderer....anymore.... ;)

Joe

Shoot. I was hoping for an axe to the right side of the head. I guess a friend or buddy will have to do for now. Thanks everybody.

Hang in there kdeen, and use some of these ideas that people in this site suggest.  I'm 36 and have had them for 28 years.  The mild ones and shadows don't even phase me anymore.  By keeping a log and trying to figure out what triggers some of them, you can hopefully reduce the frequency.  I thank God that I don't get them as often as some people. 

Headache Boy UK has an interesting idea about how to get someone else to understand what you're going through.  Except you need a gallon of slushy and when the pain starts they have to keep chugging - and that's just a medium one.  Of course a red hot fireplace poker through the eye could give him some idea too - just kidding, don't do that.

I try to refer to them as just a Cluster (or Cluster F) because using the word headache is misleading.  It's like calling an infected appendix just a special type of stomach ache.

I've also found that sometimes meditation can help from having a shadow turn into a full blown Cluster.

Man. I am about to loose it. I have just finished my 2nd worst attack yet. I think if I was able to walk or talk, I would have dialed 911. HOW do you guys do this? I am sitting here in my house that is at 78 degrees, my kids are burning up, under a blanket, because I get extremely cold during an attack for some reason, exhausted, shaking and my head still hurts. I am just at a loss right now on how you guys live with this.

Sorry to hear you just had a bad one.  I feel for you.

Unfortunately, most of my life I've been misdiagnosed, so I dealt with it because I had no other choice.  Now I'm seeing the light at the end of the tunnel - that there are things that work.

Did you try the Red Bull when it first started?  Have you gotten oxygen yet?  A poster here named Batch sent me a message with all the details of what and where to order O2 regulators and such online.  If you haven't receive the message yet, then I could probably forward it to you.  I haven't ordered yet, but it sounds like they will put a rush on it - sounds like you'd be willing to pay the next day air.  Your headache specialist should be able to help you find the local oxygen supplier.  Word has it that welder's oxygen is the same as medical oxygen in a pinch.

So sorry you're getting slammed KDeen. Are you in the process of getting some oxygen? How about imitrex? Ice and a Redbull or the like may help too if you get on it fast.

You might want to search and read threads on triggers, I don't think I've seen anyone mention those to you yet. Triggers aren't "causes" as in if you eliminate them you'll never have CH. But many here know certain activities, scents, etc can trigger a CH. Alchohol is the biggest trigger people seem to agree on, and most give it up entirely when in cycle. (Sucks I know). Certain perfumes etc can bother people. I heard someone mention cleaning supplies which for me is enough of a reason to get someone else to clean the bathrooms!

Keep talking to us -

Christy

Red bull makes me sick, imitrex hasn't worked in the past and I'm waiting on the doc to approve the oxygen. This is just insane. I'm a single mother, which I'm sure a lot of you guys are too, but, I'm literally afraid to be alone. My kids don't really have a clue about what's going on or even what to do to help. confused, sick, tired and in pain.

kdeen0201 wrote on Aug 23^rd, 2010 at 6:57pm:

...imitrex hasn't worked in the past

What form of imitrex was it that wasn't working? Just double checking because when someone reports imitrex not working, 99% of the time it turns out they were wrongly prescribed the ineffective pill form, not the highly effective injectible.

I sure hope you can get some relief ASAP via O2 or other treatments mentioned here and join the "lucky" CH'ers amongst us who aren't living with crushing attacks, who are beating them down and killing them.

Ouch rough spot to be in Kdeen.  Do you have any family or friends around that can help out? 

If not maybe there is someone here that lives close by that can be of some support to you.

Hang in there I'm sure your doc will come through soon with the O2. 

PF Wishes to you!

yes, it was th imitrex pill that didn't work. I'm having a lot of issues with insurance also. maxalt which is covered, but only 12 pils a month, seems to work on an active attack and frova and relpax also help but are not covered at all. I've been paying around 30 bucks a pill for them. and using up to 3 pills a day. my doc just prescribed me dihydroergotamine (?) nasal spray and I'm having serious doubts about it, but I'll try anything rght now. I have seen a lot about the imitrex shots and have looked into them. my insurance will only cover 6 a month though. That will not last me even close to a week right now.

6 per mo. is more than my ins. will cover.

I hope you asked your Doc about O2 ?

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With O2 as your first line abortive, and 6 (which will actually equal 12 to 18) imitrex shots a month for back up you could be a beast killin' mofo!

Don't blame ya for doubting the ergotamine spray. I tried that old school crap a long time ago and all it did was make me barf.

If you'll try anything now, something like psilocybin could potentially be a more effective preventative than any drug (hence the references you've seen to clusterbusters.com and their forum)

Kdeen - have you discussed O2 yet with your doctor? Many of us here are of the opinion that if a doctor isn't comfortable with prescribing oxygen (despite the fact that it's cheap and has no side affects) that it's time to change doctors.

Best,

Christy

Hi Kdeen.  OK, keep narrowing this down to the specifics, I like that.  Redbull is not the essential brand/flavor.  It is the caffeine and people think the added taurine of the energy drinks makes the caffeine more effective.  Vasoconstrictor.  I get hit every morning (when in cycle) around 9-10am.  At 8:45am I drink a caffinated soda, coffee, tea etc.  Straight caffeine works for me.  I have also taken a preemptive caffeine pill (nodoz/vivarin). 

If you wait until it is really hammering you it may be too late.  The caffeine/taurine may get in faster??  So don't sweat the redbull stuff, just try some sort of caffeine routine as needed. 

Couple other things:  Disregard my advice if you are unable to use caffeine for any reason.  Don't make other matters worse, like bad stomach, migraine triggers etc.

This is a good strategy for daytime hits.  Bad strategy for nighttime sufferers because it tends to disrupt sleep so bad. >:(

For the nighttime hits people have had good success with melatonin before bedtime.  Some people have had great results.   Check it out, more written on this site.

There is a way to split each imitrex injection into 3 seperate shots.  Most people don't need the whole thing, so split it and make it go further.  Keep acquiring more when not in cycle so you will have plenty when you are hit next.  I haven't done any prescriptions, that is just what I read everyone say here. :P

For me, psilocybe mushrooms and caffeine have saved my life.  2 attacks in the last 2 years, not my normal 120.  No side effects, no oxygen,  just peace, love and pain free joy.  I know that I have this condition for life and there is no cure.  I also know that there will be some sneakers that make it through my defences from time to time.  But choose your course and make it work.  Pharmaceutical, naturals...we can make it work.  Hang in there, I know this is rough.  Keep making gains each day in your knowledge and treatment.  ;)

I would be tempted to order all the oxygen stuff right now if I were you and hook up with the local welders supply place.  I think the oxygen, caffeine, melatonin may be your best immediate relief.  Then either get your imitrex injections sorted out or go over to the busters website and get your RC seeds ordered.  :)

Good luck! :D

--Shaggy

ps, lots of animated faces for you today, I think you need them :(

KDeen,

First and foremost never forget the pain does stop.  Never lose sight of that.  It's easy to get down during times like this causing us depression.  That only makes things worse.  You start feeling hopeless and dwell on when the next HA is going to hit.  Truth is there is a little hope.  Pain free days are out there for most of us.

You mentioned you're seeing a HA specialist and no O2 yet???  Change doc's, find one that knows about CH and you'll have your O2 that day.  Stop the insanity!  You don't have to suffer like that.  Buy welders if you have too.  You'll be surprised at how well it works.  Preventatives are a must as well.  Verapamil, Lithium are probably the two best.  Abort with the injections when all else fails (up two three with a 6MG vial).  Pills aren't worth a crap.

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