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Claudia09

'Symptoms' Only - No Pain?

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Hi! I'm brand new here. Glad to know at least I'm not alone. I'm a 31 yr old female. Started having nightly / every other night cluster attacks about 2 months ago (nearly all between 2-4AM) - the 'pain' phase lasted for a few weeks, took a break, came back just once in a one-off night attack and now I just continue to have the 'symptoms' of attacks but no pain --swollen droopy eyelid, clogged nostril, etc.

I've been pain free for 2 full weeks now. However, every morning I wake up as though I had an attack the night before. Sometimes too, around 10PM, the eye will swell, pupils get small and I go through all the motions of having an attack without the headache pain. I am SO thankful that the pain is not accompanying the attack, but was curious if anyone else has experienced this? Would really love to hear from you all as I'm new to this and trying to figure out how to manage the symptoms and the overall disease. 

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I know, as chronic, that I have a slight droop to my right eye now, some discolouration around it, pupils are no longer PEARL (Pupils equal and reactive to light) right pupil is no longer equal to left and is slightly sluggish. All it seems 'normal' according to my neurologist. I seem to have slightly above my old normal right sided nasal congestion as well.

Directly to what you are experiencing, I have woke after apparently sleeping through low scale clusters with the tail end of the symptoms leaving, ie runny eye, swollen, stuffed up etc. 

I have not had any precursors such as you have had that were not followed by an attack, though my warning window is abysmally small, 1-2 minutes from droop and sniffles to it ramping up.

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Hi Claudia! Yes, I have had a cycle end and leave some symptoms hang around. The Ptosis lasted for months as did the constricted pupil. In addition, I felt every hair on my head in that quadrant burning for months post cycle. The droop was so bad that I asked my eye doctor about having surgery to pull it back up. Nope. Not without me being CH free for a few years! I worked it daily by reading and gradually bringing the book up higher and higher so that I worked the muscles to hold it up. It took months, but I did succeed in getting it to open fully and stay that way. The pupil came back to almost the same size as the other one in time. In cycle it would only dilate about halfway. 

Currently I know that if I feel my eyelid swelling up I need to grab some caffeine. That normally means a hit is incoming. 

Hope this helps and welcome to the group!

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Claudia,

Welcome to the forum, sorry you have to be here.

I don't often get hit at night, most of mine are in the evenings and weekends. But, I have had times where the pain didn't wake up, but I woke up afterwards (often the cluster invaded my dream). And when that happened, I had the symptoms, runny eye etc.

I also get a lot of migraines, and have had painless migraines, where I get all the other symptoms apart from the pain. So, I can happen with clusters too, although extreme pain is one of the primary signs. Granted, could say the same thing with migraines.

You asked on my post about Doctors vs Patients what Busting and some other terminology is. 

Busting is essentially stopping cluster attacks with non-traditional methods, some of which aren't strictly legal. As the General page is open to the public, I won't spell it out in detail here, but if you want to start a post on Theory & Implementation, for example, will be glad to go into detail for you. 

KIP is another term you'll see here. The KIP scale is a 1 - 10 pain scale a lot of people use to describe the level of pain from a cluster. It's named after the late Mr. Bob Kipple from one of the other Cluster forums. He was the first to write it down, and here it is in full. Personally, my cluster scale is slightly different from how the KIP scale describes them, but if you say I had a KIP 8 last night, everyone pretty much knows it was hell.

Keep asking questions, we are here to help. You're not alone.

MG

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@MoxieGirl This was sooo helpful thank you! Good to know about the KIP scale. Already be on this forum for just 1 day has been so so helpful. I feel good to arm myself with knowledge!

 My only other question was about 'monster' - what is that?

 

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Monster, for me is an energy drink like Rockstar or Red Bull, high in taurine and caffeine, many say it helps (Including me) if you drink it fairly fast at the first sign of a hit. In my case, caffeine is also a carrier for pain meds, helping them work and interact faster. I do not recommend nor are they very widely used for ch, but for me opiods have a limited effect for me, never getting rid of them but if they, with caffeine, 02 can take one down even a point it is a big thing. 

Some have also referred to the attack as "The Beast" "Monster" but it is likely the references to monster are the energy drink. I choose the monster "zero" no sugar and like 10 calories.

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What Devonrex says, plus..

I think most people refer to clusters as the Beast or the Demon. I tend to refer to us that have them as Cluster Heads.

If I'm getting hit a lot, I'll usually turn to Mt Dew as my energy drink of choice, nice and cold as well. Coffee helps sometimes. But any energy drink will do. It can help abort, but I like it for recovery afterwards when my body is low on sugar and energy. 

The important thing this site did for me was give me hope. The Beast can be stopped, or at the very least brought under control. When I came here, I had gone through all the doctor prescribed meds, and my clusters were at their worst. I was getting 2-5 attacks a day every 2-3 days. I'm chronic, so that had been going on for about a year, getting worse as the year progressed. I literally, was putting a date in my calendar to kill myself when I joined this forum. I decided to give myself 1 year to see if the methods on this forum worked, or if I could find another solution. 

That was 8 years ago. 

I recommend diving in the Cluster Buster Files section, and reading all the numbered files, and ask questions. The people here know a lot, a lot more than doctors do (in my humble opinion). And we are all keen to help.

xx MG

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I never say beast or demon but years ago before I knew anything about them I would say it's what burning in hell must be like. Good luck Claudia!

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