I have a few questions about ch symptoms and ch in general
1. can you get the ha on the left then the right very next hit?  I'm pretty sure this is what is happening.
2. My left arm aches when the ha is on the left. Has anyone else noticed this?
3. does anyone have shakes, sweating, the leave me alone "symdrom", hate loud sounds espessiacly low tones, hate light?
4. I have an AVM  and have read that some people with
AVMs have ch. Is there anyone else that has one?
5. I've noticed that opite pain killers do nothing for my ch, does anyone know why this is?
6. I want to become an o2 junkie, can anyone help me create a "shopping list"? I have very limited use of the internet and really need to use o2, umm welders o2...
7. my ch have changed from starting at 9am to starting at 1pm, no melatonin, then back to starting at 9am when i started taking melatonin at night. does the ch usually change like this? I just had to quit taking predisone.  affacted my heart

any way thank you for reading my ramglings hope all is doing well
p

i live in lewiston Id.
i can help a bit the sweating is real prevelent to us , rocking and pacing and many other crappy things that go with an attack.
i am sure what a avm is (im a little slow)
it is not common for ch to switch side during a cycle but some do.
stay away from opiates, they won't help and have bigger problems to deal with down the road.
o2 you need a regulater of 15-25 lpm with a non-rebreather mask
my arms ache during a hit only because of the imitrex injenctions though (note if you have heart issues, imitrex may not be for you)
the only common thing about ch is everyone is a little different and it will morph over time.
try chugging an energy drink with caffiene and taurine and also try ice or heat  (most prefer ice)

hope this helps/// pm me and we will talk more

I thought i would add. Have you been properly diagnosed by a neuro yet?

Hey George !!!!here is another one Idaho.

I'm still very new to all this, compared to most here. But I can tell you I do get the shakes when the pain gets real bad, almost like my body is going into shock. :/  I'm still learning about all the meds and the o2.

I have not noticed a particular time pattern when it comes to my "hits", it's just pretty much whenever.  I do know that they come everyday non-stop tho, lately. *sigh*

What do your docs say about the avm?  Shouldn't they be doing something about it if it is symptomatic???

my docs live in the stone age i think!! lol they say that an avm does not cause pain. but that is not what I have read on the net. I feel like my body "goes into shock" too. right before the pain hits and during too.  I'm new to this too.  Hang in there and I will join you!!

1. can you get the ha on the left then the right very next hit?  I'm pretty sure this is what is happening.

This is very rare but not unheard of.

2. My left arm aches when the ha is on the left. Has anyone else noticed this?

None that I'm aware of.  I'd be worried about heart issues with left arm pain.

3. does anyone have shakes, sweating, the leave me alone "symdrom", hate loud sounds espessiacly low tones, hate light?

These symptoms are not all typical for CH.  Though no one is typical.  I'll ask the same question Karl asked; "Have you been diagnosed by a Neurologist"?  If not you could be playing with fire treating them as CH.  There are headaches out there that mimic clusters but the treatments we use can be fatal.  Please be careful.

Sweating - yes.
Leave me alone - yes.
Loud sounds - no.
Light sensitivity - no

4. I have an AVM  and have read that some people with
AVMs have ch. Is there anyone else that has one?

I've read that these can cause severe headaches.  I'd look to get a referral to a Neurologist that specializes in AVMs.  Have them tell you what the source of the pain is.

5. I've noticed that opite pain killers do nothing for my ch, does anyone know why this is?

They can only take the edge off.  They don't attack the central source of the pain which is the Trigimenal Nerve in the brain.  Only certain abortive medications including but not limited to Oxygen therapy and Triptans can.

6. I want to become an o2 junkie, can anyone help me create a "shopping list"? I have very limited use of the internet and really need to use o2, umm welders o2...

Take a look at the two Oxygen threads that have been stickied on the medications page.


7. my ch have changed from starting at 9am to starting at 1pm, no melatonin, then back to starting at 9am when i started taking melatonin at night. does the ch usually change like this? I just had to quit taking predisone.  affacted my heart

The one constant about CH is that is always morphs.  Just when you think you're in a steady pattern it changes things up on you.

any way thank you for reading my ramglings hope all is doing well
p

wrote on Nov 18^th, 2008 at 8:48pm:

I thought i would add. Have you been properly diagnosed by a neuro yet? Hey George !!!!here is another one Idaho.

Well, by golly....   ;)

Hi, and welcome from the "other Idaho" (down in Boise).

Much of what you said is pretty familiar.  The "shakes" during a severe hit, the need for solitude (I'd let the earth swallow me if I could), the sensitivity to sound, the sweating, etc.  

Mine have never switched sides, however.  I've always been a lefty.  

I'd be a little concerned about the left arm pain--your BP rises during a hit, and that certainly increases the stress on your heart.  Might be worth getting it checked out, but it could also be nothing more than the inflammation of nerve ganglia that causes neck and shoulder pain in some of us during an attack.

You're correct that opiates don't work at all well for CH pain.  There are complicated reasons for this that I don't pretend to fully understand, but briefly--opiates are ineffective for pain that originates in the nerve pathways themselves.  They'll reduce pain in affected tissues in areas surrounding the nerves, but not in our misfiring trigeminal and occipital nerves.

Again, welcome...  

Best wishes,

George