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Greetings from Canada!

I am a newly diagnosed/in process CH patient and I'm really happy to have found this forum. Until my first attack 4 years ago I had only ever heard the name cluster headache (via Lisa Kudrow, of all things) but I knew nothing about the pathology. Now I've gotten some info but also many more questions that I think can only be answered from experience - and it sure goes a long way just to talk to people who understand. I've already walked this path having spent 17 years getting a diagnosis for severe REM sleep apnea and my son has a very rare sleep issue himself. I have a whole side of my family I'm not sure I'm even going to tell, I just cannot take on that mountain again right now. 

I mostly wanted to say 'hi' and the rest is the background of my experience until now, so go ahead and stop here unless you're interested in that too :)

 

As far as the CH goes, the very smallest silver lining (minuscule even) may be that my first attack 4 years ago was absolutely canonical for CH and I'm not a person to get headaches of any kind to begin with so diagnosis seems a bit easier. Because I didn't know about CH at the time, when I woke up (2:15 am, who's surprised?) and first saw my face I thought I'd had a stroke or aneurysm on my right side. Only because my right nostril was stuffed and eye streaming while the rest of my body still worked did I pause to check differential diagnosis. Of course the only hit I could get for my symptoms was CH. It fit perfectly so I waited it out instead to see if it resolved; two hours later it was over so probably not a stroke. I had another shorter bout two nights later and then...nothing. 

This was at an incredibly stressful time in my life so I hoped maybe it was a one-off and took a wait and see approach. Two years later it happened again, this time on the left. But again a single headache, only 40 minutes each this time, on three nights spaced over 5 days - not really much of a bout. I still waited on it, I had so much else on my plate.

Only a year later next, 2019, this time two attacks a day over 8 days. I told my doctor and got an MRI, no aneurysm, no tumor found. I was doing some other testing so didn't rush to the neurologist yet so we could provide all those results as well - I figured I had a year, right? Hah!  

December, left side, 1 per day, 5 days, now centered on my temple/cheekbone but only, say, an 8/10 and not the 10/10 of my first bouts. I told my doctor at my next appointment but I was leery that it didn't seem painful enough relative to earlier/was relocated plus other indicators kept possible MS on the table.  

March, left side, 2 per day, 4 days, again at my temple/cheekbone

May (now), right side, 4-5 attacks per day,  90 min, mostly temple/cheekbone again, 9/10, 22 days so far and counting. My doctor's appointment is in a few days but ER doc a few nights ago took my history, did a mini-neuro, checked my records, diagnosed CH and prescribed Zolmitriptan to tide me over until my appt on Tuesday. 

So that 's where I'm at. Now that I've learned more about CH, some of the symptoms that kept MS possible fit CH even better, so we're thinking it's primary CH and a neurologist will confirm it I guess. Of course I have many questions, most especially the attack escalation for this cycle. Was this a common experience for you early in your CH? What is the likelihood that the cycles will establish themselves at this level? It hasn't ended yet so I have no idea how long it will go, it's already 3X longer than ever before yet I'm only at 3+weeks and I'm know that many suffers here I've read seem to cite 8-10 week long cycles at minimum, so I really don't have it so terrible in that light. On the other hand, if I'm also looking at 4+ daily attacks at 90 minutes each for that many weeks at a time it will pretty completely disable me during that period without effective treatment, so I am naturally hyper focused on your experiences with treatments while at the same time trying not to panic at the idea of my life collapsing. You know how it is. 

That's all I've got right now, but I look forward to getting to know you all better and participating in the community :)

 

 

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As is said here, Dr.J', welcome to the community and sorry you have to be here.  I don't think anyone can really answer your question about what your future cycles might be like, except to say that you will learn to manage them so that they are far less awful than what you are experiencing right now, and it's not impossible that you will find a way to eliminate some or all of those cycles.  I think this post and the links within it will provide you with a pretty good tour of treatment possibilities and options, and some things (like triggers) to be aware of: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/.   I don't remember whether that post mentions Emgality, the most recent pharmaceutical treatment for CH.  Our anecdotal reports here are that it works okay (or well) for some people, but is not very effective for others (we're a limited sample here--people who have found success with Emgality are not really likely to show up here, unless they were already here).  

Some neurologists are pretty good with CH; most are not. So be as prepared as you can when you have an appointment. In particular, be prepared to insist on oxygen, which is  the #1 lifesaver for people with CH.  The vitamin D3 regimen and busting are also powerful tools.  In that post I linked to, there are several suggestions for things you can do right now to reduce the severity of your attacks.  If it will be a while before you can see a doctor and thereby get access to medical oxygen, you might consider setting up your own oxygen system using welding O2, which is used by many people with CH.

Finally, note the search bar at the top right of the page.  That will help you look into any topic that interests you.

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Hi Dr. Julie and welcome !

I personally see 2 paths to travel; pharmaceutical and non-pharmaceutical but many of us mix whatever helps. I think the best way to choose your own is to read experiences of others and listen your hunch.

It will get hell of a lot better from now on ✌️

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Hey Dr J,

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

Looks like you've already received some good advice. I'd also recommend you do as much research as you can, as mentioned above, most doctors (even specialist neurologists) are pretty clueless when it comes to CH. They just don't know what to do or their data is out of date. Ouchuk.org is a good sight for background information on the different types of primary headaches, and explains them well along with some standard treatment options. Some things work really well for some types of headaches (e.g. triptans for migraines and indomethacin for SUNCT). Triptans don't normally do anything for clusters, in my experience. Although I think some injectable forms of triptans can be beneficial. 

Caffeine is also helpful to abort an attack. Strong coffee or an energy drink will sometimes shorten attacks. 

Mox

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Dr J,  (hey, do you play basketball?) :)

I ++ what others have said above.  100 percent high flow Oxygen is a life saver.  You have to get on it before the attack ramps up.  If you feel one coming, go ahead and hit the O2.  The earlier you get on it, the better it works.  Also, my go to are energy drinks.  For us CH'ers, for some reason I think everyone I've spoken with can drink them anytime at night and still fall asleep.  When I get a night attack, I hit the O2, and carry the tank to the fridge and get an energy drink.  Slam half of it.  Back to the O2 and sit down (Rocking for some reason seems to psychologically help).  Hit the attack quickly with those two and I rarely ever have an attack last longer than 10 minutes.  If I don't get on the O2 early, it doesn't do any good.  I can huff for an hour and nothing but pain.

Like CHF said above, checkout the list of common triggers.  I've found I can reduce my attacks to less than half if I stay away from any trigger foods.  My biggest are chocolate, alcohol, fermented cheese (the fake cheese whiz stuff is fine).

Cheers,

J

 

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Hi Doc J...glad ya found us..

...read this site and others like your life depended on it...CH aint gonna kill you but that's the attitude ya gotta have.... because we are, in many cases, our own best perhaps only advocate...

...don't assume just any neuro 'knows" CH...many don't...best to find a headache specialist...

...if the Zomiltriptan is oral you're gonna be disappointed....too slow....an injectable or nasal form works much quicker with your goal to use the least amount possible since rebounds and side effects can be considerable. Imitrex comes in 4 or 6 mg statdoses....many find they can get by with only 2 mg (greatly limiting the side effects and rebounds) by way of hacking the dose pen...or better yet , by obtaining in vials and injecting with insulin needles only the amount needed. In my case, Zomig NS 5 mg provided near 100% relief as abort of last resort... with no side effects, rebounds and an 18 hr CH free window....YMMV

...OXYGEN OXYGEN OXYGEN.....saved my sanity, perhaps my life...no side effects, relatively inexpensive, easy to use, way more portable than you may hear. You'll need a non-rebreather mask, 15-25 lpm flow (at least to start...adjust with experience)....and a technique that works for you (hyperventilate, breath and hold, variation of the 2, etc).

...caffeine in the form of energy drinks or VERY strong coffee is an absolute essential tool alone or in conjunction with O2....I have found that using only as an abortive (preventive if you know your cycle timing well) and avoiding at all other times makes it far more effective as the body has not developed a tolerance. various forms of energy drinks available ...you are looking for minimum 100 mg caffeine and 1000 mg taurine per dose (be sure to discuss with neuro, some don't like taurine). Incredible amounts of sugar is daunting so sugar free or the 2 oz 5- hr energy shots preferable...tho low blood sugar was a trigger for me. Taken cold and fast worked best....almost like you are attempting a brain freeze (irony here is that brain freeze is one of the few pains non clusterheads can begin to relate to CH)..

...the vitamin D3 regimen has been successful for many clusterheads...definitely worth a try as safe, inexpensive and beneficial beyond CH....

...you are, of course, on an alternative medicine site that exists because of the limited success of traditional meds...well worth consideration...for many the only thing that ever worked...

...a headache diary is very helpful in dialing in what your triggers are...and there are many...from smells, to foods, to barometric pressure changes, to changes in routine....and i've seen frequent comments on seeming connection with sleep disturbances (so effectively treating that one may help with your CH)....

....if you got the right attitude, the proper tools and a plan.... the beast is manageable....

...interesting note on MS...I've been checked multiple times,  apparently there are some symptoms shared with CH...

regards

jonathan

pardon my repetitiveness....no intent to step on toes....typed before I saw all the replies and i don't have the energy to edit...

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Posted (edited)
1 hour ago, ThatHurtsMyHead said:

(the fake cheese whiz stuff is fine).

...i just hafta say...as an x/food scientist....that this is the most appropriately named food extent...it looks, smells, tastes exactly as named...

...back to your regular channel...pardon the crude interruption.....

Edited by jon019
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Hello Dr. J! I can respond to the temple/cheekbone bit. My CH is a glowing hot railroad nail in my temple. It grows and the pain crawls out of my head and lights up the branches of the trigeminal nerve. Then it bores into my brain and eye. My family sees me rubbing my forehead and the let me know because I am absentmindedly rubbing while talking or watching TV. And that is the end of my evening with uncontrolled CH. 

They began with one a night at 8pm. Then, weeks later they began to hit at night - right after I fell asleep. As the weeks went by, it worked up to its' peak of four per night, each 2:15 long. Long and short is, as the cycle moved forward, the head got worse. Then when it was over, they vanished. 

When I first began this journey, a long time ago, I was a mild chronic with typical behind the eye pain. Then I had a 10 year hiatus! But, they did return as Episodic and I found out what a '10' was. It was a huge shock. 

However, I now have them under control and have not had a cycle in a few years. :) All thanks to the information you will be reading here. 

Verapamil is a first line treatment for CH in the medical field. Along with Triptans. Some can get good control with Verap only. Others, no. The Neuro should think of those two first, along with a Prednisone Script for short term use. It helps provide pain relief while the Verap builds in your system. Long term Pred use can cause severe bone issues - AVN. 

No matter what he prescribes, you want O2!! Aways, O2. It can be a problem with insurance on occasion, so push hard. If you can't get a script for medical O2, then many set up an O2 welding tank and attach their non-rebreather mask to it and huff away. It is not 'dirty' O2. 

Read and ask away! 

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Thats alot of info in just under 24 hours. As you can see you have found the best place to be with a lot of people willing to help as much as they can.  I can only add some links to this for you to find the mask and oxygen regulators we all seem to use. Most people will get a E size tank and a M60 size tank, the larger M tank will take the same regulator as the M60.

This regulator will work on E tanks

https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1

This one will work on the M and M60 tanks

https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1

The mask can be found here

http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

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Thank you everyone for the warm welcome and excellent information!

Covid has kind of messed up the system a bit. My GP referred me to neurologist but in the meantime sent me to the ER immediately for a neuro consult there to get treatment started. They gave me Verapamil (pill) but I was back again an hour later with bad attack and they shot me up intramuscular which made a difference. After that attack I was pain-free for 14 hours, it was amazing. Enough time to fill my prescription and make sure the level stays up (240 mg/day, x3 pills @80mg each). But I haven't major attacks now for 36 hours, just maybe shadows on schedule that are a Kip 4 and much, much shorter. What a relief. I'm nervous that it won't hold but also very hopeful that I'll be responsive to the treatment.

I'm looking into busting and intend to try it in the near future. I'm a research scientist and due to unusual sleep-disorders in my son and myself involving the hypothalamus/REM/Circadian rhythm I had already researched psil/MM in that capacity a few years ago so I'm firmly behind its efficacy.  

 

Thanks again everyone!

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Posted (edited)

@Dr. Julie, I had never heard of psilocybin being used to treat sleep disorders. Can you link to research?

I had a severe sleep issue that just popped up out of nowhere in 2015. I completely lost the ability to fall asleep naturally, and was awake for several days before getting medication. I was completely dependent on sleep medication for a few years. A MRI just showed some scarring in the midbrain that may or may not have been related.  I slowly recovered, but it took years. I was still struggling with sleep issues, but much better when my headache started. 
Now that I am busting, all those difficulties are gone. I don’t know if it is because of the way psilocybin tends to smooth out destructive/repetitive thoughts (subconscious anxiety about being able to sleep?) or if there is something else going on.

Edited by Jteira
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...ok Doc J...you just found out why  the ER is usually pointless for a clusterhead....what they needed to do was slap an oxygen mask on your face at 15 lpm or higher ....and a shot of Imitrex. one pill of verapamil and send you on your way is criminal.....guessing that intramuscular was indeed imitrex....

...verapamil usually takes 10-14 days to show effect...immediate release (vs sustained) reportedly more successful....240 mg/dy on the low side but it's wise to start low and go up if necessary. meaning, don't give up on it if the 240 doesn't work...some of us have gone over 1000 mg/dy. can have an effect on the heart rhythm so an ecg before start as a base line...and any time dosage increased is a wise precaution. keep in mind for later reference that when busting you will not want to be over, i think ,320 mg/dy but others can speak to that far better than I. typical treatment with verapamil includes a prednisone or methylprednisolone IV and or taper to tide you over until the verapamil kicks in.....

best

jonathan

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What delightful 'new' news!! My eldest has a severe sleep disorder. It would be amazing for her to be helped by this research. I look forward to reading more about this issue too.  

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