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MoxieGirl

Cluster rules

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Making these up as I go along, just having a bit of fun. You're welcome to add some of your own.

  • First rule of clusters: No two cluster sufferers have the exact same symptoms.
  • Second rule of clusters: Just as soon as you figure yours out, it changes.
  • Third rule of clusters: Try everything. What works for you may not work for others and vice versa. 
  • Forth rule of clusters: My triggers are not your triggers, and your triggers are not mine, but they might overlap. 

 

MG

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One of my rules are no two people have the exact same pain, pain is relative and you can’t judge some one else’s pain compared to yours.  All you can do is empathize and offer help when possible. 

 

Great thread MG!

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#1 rule ignore people who are presistant to telling me "just have a glass of Wine" or "have a beer youll be fine!" Or my favorite "youre still not drinking?"

#2 ignore people who say ive had those or my husband used to get those or my dog gets those!

#3 Bring your 02 with you when ever you can!

#4 fight beast with Monster

 #5 be kind to others even when your hurting its not thier fault

#6 seek and destroy all glade plug-ins, candles, enfusers, car air freshners and what ever damn strong oder that triggers me. 

# 7 The emergency room is worse then my room with a cluster attack. Theyll just leave you there to suffer

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So true, I’m on a shit ton of verapamil and still getting CHs. My doc wants me to continue it as he thinks I need a back up to mm. I think we’re going to have a long talk including BHDs rule. Thanks Chris this one hits home. 

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On 2/14/2019 at 7:44 PM, jon019 said:

….it won't kill you...no matter how many times you wish it would....

I used to think that but after about 21 years of them and im nearing 50 i think they can. 

I now go onto shock and sweat bullets then i get a wet freeze that gives me a cold seizure.

So although they cant kill you all by themselves, they can trigger other things and stress the heck out of any other weakness you may have.

 

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Just when you think the 10 you are experiencing is the tenist ten you could ever have, you have a new definition of ten. To the point the 1-10 has become more of a sliding scale, with high, mid and lows to each number.

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SwiftLaw must be a sailor.  I don't think anyone else would get that. ha ha...  Always Reef Early.  That, and make sure you watch the wind direction.  Never had an accidental jib, and don't want one either.  :)  (ok sorry, I'll get back on the thread subject, ha ha)

J

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On 3/14/2019 at 2:20 PM, ThatHurtsMyHead said:

SwiftLaw must be a sailor.  I don't think anyone else would get that. ha ha...  Always Reef Early.  That, and make sure you watch the wind direction.  Never had an accidental jib, and don't want one either.  :)  (ok sorry, I'll get back on the thread subject, ha ha)

J

I'm a sailor too. Am so very addicted to it. 

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On 3/14/2019 at 11:46 AM, devonrex said:

Just when you think the 10 you are experiencing is the tenist ten you could ever have, you have a new definition of ten. To the point the 1-10 has become more of a sliding scale, with high, mid and lows to each number.

I know what you mean. When my clusters were really bad, my worst ones were a 14 on the 1-10 scale. Now I've had a few years of mostly mild ones, something that I once considered a 1 or 2 is a 4 or 5 just because my 'normal' has shifted. 

On the boards, I use the KIP scale, as it is so commonly accepted, but I tend to think of my pain in these terms.

  • Annoying
  • Disruptive
  • Sharp
  • Painful
  • OUCH!
  • *stream of swear words*
  • breathe, breathe, breathe....
  • Extreme pain
  • Beyond words

MG

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Mit, I think your rule can apply to a lot of cluster heads but not everyone.  There are plenty of people that also have great results with psychadellics. It’s rare some one says triptans stop working. They aren’t my answer, I save them for true emergencies instead of going to the ER or when I have something important to do. For many O2 works without fail.  For others their clusters change and seeds don’t work any more but mm or L does.  I do agree it can be hard to figure out and stay on top of. 

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On 3/15/2019 at 4:00 PM, MoxieGirl said:

I know what you mean. When my clusters were really bad, my worst ones were a 14 on the 1-10 scale. Now I've had a few years of mostly mild ones, something that I once considered a 1 or 2 is a 4 or 5 just because my 'normal' has shifted. 

On the boards, I use the KIP scale, as it is so commonly accepted, but I tend to think of my pain in these terms.

  • Annoying
  • Disruptive
  • Sharp
  • Painful
  • OUCH!
  • *stream of swear words*
  • breathe, breathe, breathe....
  • Extreme pain
  • Beyond words

MG

Here are my rules:

1.  No alcohol during my cycle 

2.  Take my preventatives when it starts.  (Verapamil, topamax, melatonin, D3).

3.  Always carry my Sumatriptan 

4.  Stock up on Sumatriptan for my next cycle 

5.  Go through the attack alone; nothing anyone else says or does can help me; and it just disturbs them to watch me squirm. 

6.  It doesn’t do any good talking about my “headaches” to people who don’t have them. They either cry (which hurts them) or think you have a low threshold for pain. 

 

I also start out mild and less frequent (once every few days at about a 5-7 KIP). Then I move into three a day 7-9.  I feel like a 10 has to make me go unconscious and I’ve never been there.  I enjoy rating things. I like your scale... though I’d edit it a bit. To me, any time you give a range/scale, each end has to be an extreme. 

1.  Mild annoyance (hangnail that’s almost healed)

2.  Slight irritation (chapped lips)

3.  Annoyance (tickle cough from cold)

4.  Discomfort (headache; your every day type)

5.  Ache (sprained ankle)

6.  Pain (broken nose)

7.  Torment (a bad migraine)

8.  Agony (getting kicked in the nuts)  

9.  Torture (root canal without anesthetic, someone on fire, a cluster headache).

10.  There are no words (you went unconscious). 

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7 hours ago, EggMan said:

Here are my rules:

1.  No alcohol during my cycle 

2.  Take my preventatives when it starts.  (Verapamil, topamax, melatonin, D3).

3.  Always carry my Sumatriptan 

4.  Stock up on Sumatriptan for my next cycle 

5.  Go through the attack alone; nothing anyone else says or does can help me; and it just disturbs them to watch me squirm. 

6.  It doesn’t do any good talking about my “headaches” to people who don’t have them. They either cry (which hurts them) or think you have a low threshold for pain. 

 

I also start out mild and less frequent (once every few days at about a 5-7 KIP). Then I move into three a day 7-9.  I feel like a 10 has to make me go unconscious and I’ve never been there.  I enjoy rating things. I like your scale... though I’d edit it a bit. To me, any time you give a range/scale, each end has to be an extreme. 

1.  Mild annoyance (hangnail that’s almost healed)

2.  Slight irritation (chapped lips)

3.  Annoyance (tickle cough from cold)

4.  Discomfort (headache; your every day type)

5.  Ache (sprained ankle)

6.  Pain (broken nose)

7.  Torment (a bad migraine)

8.  Agony (getting kicked in the nuts)  

9.  Torture (root canal without anesthetic, someone on fire, a cluster headache).

10.  There are no words (you went unconscious). 

My understanding is that a person can go unconscious from a rapid increase in pain as it drops blood pressure. I have a sister in law who passed out slamming her finger in a drawer, but I don't think she got anywhere near a 10. A slower increase avoids this effect, so you remain conscious.

During a 10 I remember thinking a primitive version of "how is this much pain even possible?!" I say primitive because even that short of a thought isn't really possible during a 10

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