Hello

As some of you may know my husband has been half diagnosed with cluster headaches, but the neurologist isn't sure as he's got odd symptoms..
So I am trying to do some research my self..

When you get a hit how long does it last? and is the pain constant or does it go up and down?

My husbands symptoms keep changing.. the current "version" is that it hurts a little for a while and then go really really intense for 5/10 mins, then go away as if its stopping for 5/10 mins and then come back.. for another 5/10 mins? This can happen two or three times..

During one "episode" (as above) it will be one side, but the next time it may have swapped.. Its never been a one sided thing for him..
On his right side the pain is always in his eye, and the left its always around his eye..

There are various other things happening too.. but I just want to see what happens to you in regard to the above so not to get confused before I mention anything else.

Thanks for your responses!

Bex

It is possible to have different symptoms as well as the normal symptoms associated with CH. I have had a constant tension headache since July along with daily migraines - but I get CH on top every few days with frequent shadows (and on the odd occasion, I seem to have both CH and migraine at once). I also have ringing in my ears and double vision that comes and goes.

Of course I have had scans to insure these constant pains and symptoms aren't anything else - has your husband had scans? I also found the CH goes away when I have O2.

There are also other members on here with a wealth of knowledge on different HA.

HTH x

Bex,

With these things I don't think there's anything that approaches NORMAL.

We all react differently, hurt differently, have different time frames, etc. All we can do is tell you how WE react and how they affect us.

Mine hit in my ear and eye and top of my head. I get a "cramp" in my ear (weird, but I do).

But as to the pain going up and down all I can say is IT HURTS LIKE HELL! I usually hit the O2 immediately and can get rid of it in a few minutes (I use a demand valve and it's wonderful - I can usually abort in 3-5 minutes).

As to the changing sides - it's unusal but it happens (Chuck is an example). Mine have changed sides once, but went right back to the left side and haven't left since.

You didn't say what meds your husband was put on or if he has O2. If he doesn't have O2, I'd suggest that you DEMAND it. It's about the only thing that works for a majority of us (about 70%) if used PROPERLY (high flow - at least 15-25 liters per minute and with a NON-REBREATHER mask). Read the literature over on the left "Oxygen info"). Ch.com (the CH.com store on the left) has a mask you can order that works great and gets high praise from most on this board.

The best thing you can do for your husband is just what you're doing - RESEARCH (and this is the best place to do it) and know more than the neuro when you go back loaded with facts. Another thing most of us have learned over the years is that we have to be our own advocate in our treatment.

Check out what works for this one or that one (it may or may not work for your husband - it's trial and error until you find what works for him), but go to the neuro armed with facts. And DEMAND O2.

Keep us updated... We're here for support and help. Welcome to the family.

Hugs BD :-*

Hello!

Thanks for the replies..

I am just trying to find out if the type of pain he's getting is similar to that of normal cluster headache suffers..

He is suffering so many symptoms that are not characteristic of anything his neuro doesn't seem to have a  clue!

The neuro has currently got him on verapimil, which a few weeks ago he added indomethacin as he thinks it could be Trigeminal Neuralgia.

When he was on high doses of both his head felt quite good painwise.. but verapimil was reacting oddly with him.. he could barely stand because it lowered his blood pressure so much and was getting pins and needles.. and his ECG wasn't great, they are reducing this now.. and leaving the indo on 150mg a day.. but his head aches are coming back..
He also has "vacant" times where is looks as if he loses conciousness for a min or two..
on Tuesday night he had what seemed like fit and was shaking a bit and was unresponsive.. then he was clutching his head in agony.. but he remembers none of it...!

His "normal" hits are that he's in agony for 10mins pain free for 10 and then agony again for then then unconscious! (this has started changing now the verapimil is being lowered)

He has had an MRI and CT and they show nothing... he hasn't yet had an EEG..

There is so much going on I am just trying to gleen as much info on different things as possible.. but not all at once as its confusing.. it seems as if its down to us to work it out as the neuro is baffled and seems just to be using him as a guinepig!

Sorry for all this..

Hi B
   Don't be sorry!    The only way to learn is to ask questions.
   When I get a hit,,,,First I feel a tingle in my temple, and then it quickly graduates to major pain, which can last up to almost an hour. this can happen several times a day, and some times back to back.
    I am on Verapamil,(240sr) once per day, and now and then I have to take another 1/2 pill.
   On Verapamil, I still get that tingle in the temple, but it doesn't go any further.   So I know I am having a hit, and go to the O2 and get rid of it.  This may happen several times a day.
   Once in awhile though one will slip through, and get bad, but O2 to the rescue.  That is why some days I have to also take another 1/2 pill.
   I was on two pills per day at 240 mg.....but had issues with my heart rhythms, so cut back.
   Also some other things will interact with the verap, and cause this.  When I took Taurine ie...energy drinks, my heart acted up. so be very careful what is taken with the verapamil.

Hope this helps !  It is very confusing at first,,,no its confusing all the time. lol   
   keep asking and learning!              lorac

I can't really say a lot here, since I am anti drugs for just about everything to the point I avoid commom asprins.

The one thing I can say is he should have instant access to o2. That will abort very well, and leave little after effect if any.

There are a variety of methods for breathing and the o2 needs to be 100%. My methods are rather primitive and I use common welding tanks, with welding tools, but it works fine.

I am the farthest thing from a doctor or expert but every little bit helps so I thought I would mention something about the indomethacin. I too have been given this rx before and currently but it is used as an abortive. I don't really mess with it since it's a pill and therefore not much good once I get an attack, but I'm just curious why he takes an abortive for what seems like a preventative use for him. I am not a big person to begin with but was also cautioned not to take them more than three times a week as necessary, even as an abortive to an attack. Just food for thought since he seems to be somewhat sensitive to some of his meds. Hope this helps and doesn't confuse.

Verap lowers the blood pressure. I couldn't get out of a chair when I took it in a very low dose (I have low BP to begin with), so that may explain that one.

Indo is used for another type headache, but hasn't had much effect on CH (or so people on here say).

I wish there was a magic pill he could take to make it all better, but each of us is different and react different to different meds.

The O2 is the only common thing that seems to work for most of us as an abort.

Hugs BD :-*

I think it needs to be said that none of the posters on this thread are doctors.  While some are extremely knowledgeable in CH, you should not really rely on the internet to do a self-diagnosis.

I am not suggesting that you abandon your research.

Just my $0.02

Somewhere around here I have a certificate that claims for passing a few tests I am a certified motor doctor  ;D
With that and a buck I can buy a cup of coffee too.

I really don't see how a pill is going to about any CH, unless it blocks it in the first place. Then if it does, how do you know you stopped/blocked it?

I tinkered with trex injections, which stop and Ch right now, but do other bad things to me, so while I have it, it would be my source of o2 ran out, which isn't going to happen.

I would never tell others what to do, but I might strongly suggest o2, since it works well for many, and it safer than any of these drugs.

The biggest reason I suggest this, is that i took o2 as total bunk, and found i was wrong. I didn't understand how something so simple, and with no bad effects, could help, and yet now this is my best way to abort.

A Ch brings a certain warning to most of us. If you get on o2 asap at that warning you will be fine, and not hardly realized what the CH is.

O2 works so well for me that at times i either delay o2, or skip it and take a full hit, just so I don't forget the pain.

I wouldn't suggest anyone else do what I do, as there is not much of a good reason to accept this pain, so I do it for my own reasons.. A never forget reason.

As for a pill aborting..... Zyprexa works well for me.  It obviously takes a short time to get into the bloodstream, but once it does, it works very well and lasts for a while too.

Bex, those symptoms don't sound like typical CH. For me once a hit starts and I am unable to stop it, the horrible non-thobbing pain stays constant for 1-2 hours.

Have you went over the "cluster quiz" on the left side of this screen? If you don't see it, you can find it where you click on to 'message board' when coming on the site. Up above, the links have lots of info.

Don

Bex,

What your describing is exactly how my CH started, i got hit like this for the first 3 years (6or so cycles) but over the last 4/5 it has developed into "normal" CH.

This wave pattern is originally what prevented me from being diagnosed as i was very insistent about this pattern of it getting progressively worse then better, for me always 3 times each hit.

I was usualy hit on the left (all my HA's are lefties now) but did have the odd one on the right!

Hope this helps, any other Q's PM me or reply!

Luke

Indomethacin is used to treat Chronic Paroxysmal Hemicraina (CPH).  It is almost 100% effective against this type of headache.  CPH mimics CH except with shorter, more frequent hits.
It's my opinion everyone should try indo to rule out CPH.

My pain is fairly constant.  It might go up and down a little bit.  I might liken it to this:  Someone parks a school bus on my head, and in the bus, a couple of kids are jumping up and down on the seats.  That's about as much as it fluctuates.