Click this link to read a post I like on the clusterheadaches.com message board...

Sep 29^th, 2024 at 4:24am

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!

New CH.com Forum › Cluster Headache Help and Support › Cluster Headache Specific › ch symptoms

(Moderators: DJ, Mrs Deej)

‹ Previous Topic | Next Topic ›

Pages: 1

ch symptoms (Read 950 times)

Tanyana

CH.com Junior

Offline

What? Now???

Posts: 66
Hayden id usa
Gender: female

ch symptoms
Nov 18^th, 2008 at 8:05pm

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

When you get to the end of your rope, tie a knot and hang on!

IP Logged

Click Here to visit the CH.com Facebook page!

on my knees

Ex Member

Re: ch symptoms
Reply #1 - Nov 18^th, 2008 at 8:44pm

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

IP Logged

on my knees Ex Member	Re: ch symptoms Reply #2 - 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.
Back to top	IP Logged

katjac

CH.com Newbie

Offline

I Love CH.com!

Posts: 21

Re: ch symptoms
Reply #3 - Nov 18^th, 2008 at 8:52pm

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???

IP Logged

Tanyana CH.com Junior Offline What? Now??? Posts: 66 Hayden id usa Gender:	Re: ch symptoms Reply #4 - Nov 18^th, 2008 at 8:57pm 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!!
Back to top	When you get to the end of your rope, tie a knot and hang on! IP Logged

DennisM1045

CH.com Alumnus

Offline

One wave at a time!

Posts: 3437
Haverhill, Massachusetts, USA
Gender: male

Re: ch symptoms
Reply #5 - Nov 18^th, 2008 at 10:02pm

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

Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

IP Logged

George

CH.com Moderator
CH.com Alumnus

Offline

Black-Billed Magpie

Posts: 8126
Boise, Idaho USA
Gender: male

Re: ch symptoms
Reply #6 - Nov 19^th, 2008 at 9:12am

Quote:

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

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

Well, by golly.... Wink

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

"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535)

IP Logged

Pages: 1

‹ Previous Topic | Next Topic ›

« Home

‹ Board

Top of this page

©1998-2013 Web Vision Enterprises LLC All rights reserved. All information on this site is protected by international
copyright laws. You may not re-distribute any information from this site without written permission from
Web Vision Enterprises LLC and the webmaster of this site. Violators will be prosecuted.
You may view our privacy policy and financial disclosure statement here

DISCLAIMER: All information contained on this web site is for informational purposes only. It is in no way intended to be used as a replacement for professional medical treatment. clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site. All information taken from the internet should be discussed with a medical professional!