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CAClusterHead

Day-long low intensity episode

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Hi folks,

This is my first post on here so firstly thank you all for being there. I feel cluster headaches have taught me to identify and focus on things that are truly important in life: family, small moments, being mindful and grateful. This is an incredible community of people and I feel privileged to read your thoughts and perspectives. At times, I'm selfish and make big deal out my own pain, forgetting that everyone (with CH or without) is fighting their own tough battle. Reading through the posts, I discovered people with conditions more severe than mine. To them I say: you demonstrate the meaning of courage in the face of adversity. Salutes to you.

A bit about myself. 40 years, father, husband, math/physics enthusiast. Episodic (once every 2-3 years) sufferer for the last 17 years. Migraine runs on father's side family, but nobody had clusters (as far as I know). My clusters were triggered soon after I arrived in the US for my graduate studies (most likely by abrupt change in clock). Sought neurologist help during previous and current cycle, and currently tapering prednisone + verapamil and rizatriptan (oral, aborts attack in 40 min). Dont know how long these will continue to be effective, but thankful they're doing the job now.

Historically, my cycles last for a 2-3 months and toward the end, I experience long, lot-to-mid intensity (3-5 on the scale) episodes. The pain is manageable (no need to take rizatriptan), but I cant really do any deep work/thinking/reading due to the constant pain. The unusual aspect is that if I dont abort, the pain lasts at that level for dozens of hours. For example, today it lasted 15 hours before I finally fell asleep and when I woke up, it was gone. This is counter to the common description that "episodes last 15 minutes to 3 hours". Has anyone else experienced such super long low-intensity episodes?

Also something curious I discovered. Acidic foods (even oranges and pure tomato soup) worsen my headaches.

 

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Hi CAClusterHead,

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

Life is, as I say, what happens between headaches.

I think I've only come across one or two cases where the clusters lasted longer than the predicted 3 - 4 hours. I personally, have had 4+ hour cluster attacks, but don't think they ever exceeded 5 hours. Those were some hellish days. 

But that doesn't mean they aren't clusters. And as you also have migraines (they also run in my family), I'm sure you have ways of telling the difference between them. Not going to insult you by saying, 'are you sure it's not just a migraine'. As if migraines are trivial events and you can't tell them apart. 

It's interesting that it maintains a constant pain level throughout the period. I know Shadows can last that long, but I don't know how painful they are. My perception of Shadows are different I think than most people's. 

Have you tried doing something physical during this time? Running, cycling, etc? Some people say physical activity can sometimes abort a cluster, and if it's a low level cluster like that, lasting that long, might be worth a try. 

Twice I've had a cluster span both sides of my head, even though the 'rule book' says they are always one-sided. Or, and this is probably more likely, I had 2 clusters at the same time on either side of my head. Again, those weren't fun days. 

Have you tried using energy drinks or coffee to abort? Oxygen? What else is in your inventory at fight back with?

Mox

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Thank you @MoxieGirl I've never experienced Migraines and to be honest I dont know if they can or cannot be one sided. What I do know is that the pain was qualitatively similar to clusters. I have experienced shadows (tightness, stuffy nose, etc), but this was definitely more intense than those.

Quote

Have you tried doing something physical during this time? Running, cycling, etc? Some people say physical activity can sometimes abort a cluster, and if it's a low level cluster like that, lasting that long, might be worth a try. 

This is something I'm definitely going to do the next time something hits at that low-intensity level.

6 hours ago, MoxieGirl said:

Have you tried using energy drinks or coffee to abort? Oxygen?

I'm a bit reluctant to introduce O2 but I'm going to try the energy drinks. I figure that is less damaging than popping triptans.

6 hours ago, MoxieGirl said:

What else is in your inventory at fight back with?

Quite honestly, nothing other than triptans. And my neuro said I'm already using more than I should.

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Hiya,

The way I identify my different headache types, is like this:

Headaches - general pain, anywhere on head, annoying and distracting. 

Migraine - more painful than a headache, super duper sensitive to everything - movement (even moving my eyes hurts), head movement, standing, walking, sound, smells, light - especially light. Sometimes even being touched hurts, and even thinking.  Sitting still in a dark and quiet room is often the only way to manage the pain till the triptans kick in. I definitely could not exercise during a migraine, I can barely roll over in bed. Can be anywhere on the head.

Cluster - intense pain, one sided, but it doesn't impact movement or sensitivity. I'm fine with light, noise, smells and movement. 

I often say that if a headache were the Moon, then a migraine would be the Earth and a cluster the Sun, in relation to magnitudes of pain.

The super sensitivity issue is the big difference. If it hurts to move my eyes or to have the lights on, a migraine. If not, a headache, and if my hands fly to my eyeball of their own accord and try to push it out the back of my head, a cluster. 

Can't recommend O2 enough. Although, I've not used it myself. But, everyone else on this forum will highly recommend it. It should be the first thing doctors prescribe, and it can cut a 3 hour attack down to 10 minutes. I never used it because I started Busting, which sorted out my clusters before my GP could get the O2 approved and through the system. 

Not all triptans work on clusters, and those that have them usually have a self-injector or nasal spray, as the capsules just take too long to kick in. 

Have you found any posts on the Vitamin D3 Regimen yet? It's worth having a look at (look in the ClusterBuster Files section). Although, it sounds like your body may not bode well with too much Vitamin D. But, worth checking out all the same. 

Mox

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1 hour ago, CAClusterHead said:

I'm a bit reluctant to introduce O2

Very hard for me to think of a reason for this.  

1 hour ago, CAClusterHead said:

Quite honestly, nothing other than triptans. And my neuro said I'm already using more than I should.

 

11 hours ago, CAClusterHead said:

rizatriptan (oral, aborts attack in 40 min)

The oral triptan is doing virtually nothing for you.  You might be taking too much of it, but your doctor is an idiot if s/he's giving you an oral triptan and no O2.

I'd suggest taking a look at this post.  There are some thoughts about aborting attacks when you don't have the right stuff, and (at the end) some suggestions regarding ginger, which might help you with what's going on now (even if it's not typical "shadows").  https://clusterbusters.org/forums/topic/6213-a-bunch-of-basic-non-busting-info/?tab=comments#comment-61582

11 hours ago, CAClusterHead said:

Also something curious I discovered. Acidic foods (even oranges and pure tomato soup) worsen my headaches.

Thank you for this information.  I have added it to the list of triggers that is here: https://clusterbusters.org/forums/topic/4568-triggers/.  Is it possible that you're eating a lot of MSG during these periods -- that's a big trigger for many people.

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I have had the constant low level pain several times in the past. It won't go away. Period. At that level, they are very distracting - can't focus or think well and don't dare lean over. Leaning over ramps it up fast. I have found that caffeine helps a lot. But, ginger seems to work better for me. I use ginger candy. Some use the raw root and eat it - it is h.o.t. Others make a tea. Perhaps give that a try. 

  I take the vitamin D Regime year round. Good for you and works great for many. Not sure why Moxie questioned it. I know that she can't take the D3 due to other issues. I strongly recommend giving it a try for two weeks. It can help in a few days.

Your doctor is correct to worry about triptans. You have to keep it at no more than two shots or pills (I suspect) in 24 hours. It is hard on your heart and needs to be kept at limited usage. 

How much Verap are you taking? Many CHers need high doses - like up too 900mg/day. Many get by with 320mg/day. The immediate release version works best for CH. If you are taking the extended release form, ask your /neuro to change it. And keep an eye on your blood pressure. Verap will lower it and than can limit how much you take.

ATB

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Very hard for me to think of a reason for this.

First off, thank you @CHfather for tirelessly helping countless people like myself.

Few reasons why I'm delaying O2. 1) Hardware requirements: I feel it might be burdensome to carry an O2 tank. 2) Potential fight with insurance (although, I'm aware that the general welding variety works equally well for people 3) I have a curious 2 year old and feel a bit cautious about high pressure equipment.

I know some of these are concerns simply because I havent used it before. I'd not mind if someone were to set the record straight.

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30 minutes ago, spiny said:

At that level, they are very distracting - can't focus or think well and don't dare lean over.

Yess

 

31 minutes ago, spiny said:

But, ginger seems to work better for me.

Ginger tea did help me a bit yesterday. But I drank it out of habit and not specifically for ginger. Next time I'm going to ramp ginger up to 11.

Quote

How much Verap are you taking? Many CHers need high doses - like up too 900mg/day. Many get by with 320mg/day. The immediate release version works best for CH. If you are taking the extended release form, ask your /neuro to change it. And keep an eye on your blood pressure. Verap will lower it and than can limit how much you take.

Regular (immediate) 240 mg (120 morning + 120 bedtime). Just checked my BP -- normal so far.

One general question is:

How do I know if Verap is working?

After Prednisone taper,  my headaches have reduced in intensity, but not completely gone away (as clearly evidenced by a long dull episode). But not sure if it is low-intensity because I'm at the end of my cycle or because of Verap. Would be ice to know. If verap is not working, I want to stop using it.

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When you get to the level of Verap your head needs. I could only take a low dose - 320. BP dropped too low. You need to get your Neuro to up the dose. Verap is the best Pharma that I know if for CH. Pred is great, but it will destroy your hips. Just have for short bursts if you have to be PF for something special. Do not stay on it for months!!! 

If your BP gets too low and you still have hits, it is not working at that level. Which is a big reason people move on to alternatives. They can't tolerate the high dose. 

I would work forward on the theory that the cycle is ending. With that in mind, I would use caffeine or ginger during the day, along with the Verap. And avoid fermented foods, MSG, chemical smells, and whatever else sets your head off. Start the D3 Regime and get your doc to order a blood test to check your current levels of D. That will tell you if your levels are low. Most CHers have low D when checked. Make him give you the number for your level. Being within what they  can call normal  is not enough info. You need to be above 80ng/ml - I think that is the correct notation. Docs consider 30 to be ok. Not good enough - for anyone. They are changing that faux pas finally. 

I hope this helps a bit! :) 

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1 hour ago, CAClusterHead said:

Few reasons why I'm delaying O2. 1) Hardware requirements: I feel it might be burdensome to carry an O2 tank. 2) Potential fight with insurance (although, I'm aware that the general welding variety works equally well for people 3) I have a curious 2 year old and feel a bit cautious about high pressure equipment.

Seems like you know that O2 will give you a much faster, much safer abort, so it's very much worth doing if the obstacles are surmountable. (Also, it's completely understandable that you haven't pursued this before, given the relative infrequency of your cycles).  Not sure what you mean about "carrying" a tank.  There are big heavy ones for home use and lighter carryable ones for portable uses. If you have an O2 supplier, they'll do the bringing of the O2 tank and the setup.  It goes (or can go) on a rolling stand, if you feel like you have to move it around.  Not all insurance claims for O2 involve fighting.  I think of CA as being regulatorily enlightened, so it would be worth checking.  The two-year old . . . .hmmm . . . maybe others can comment.  Hard for me to see a potentially dangerous situation if you take normal precautions.  The valve on the tank can be turned off quite tightly, and you can secure them on a stand so there's no risk of them falling on him/her.

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I delayed for ten months and it was a mistake. I could have stockpiled more injections. I like you thought it was going to be a fight. And I’m sure it would have been the way the first moron neuro ( called himself a headache doc) doc I saw wrote the script. No Diagnostic codes scribbled on a regular script actually wrote for a rebreather mask!  When I finally got into my new world class doc I travel 3.5hrs to see he just grabbed an Apria healthcare form and filled it all out, wrote the codes and wala 5 days later it was here. So you may be surprised. See if Apria is in your area and try and get the new pt form to help facilitate it. I know they cover the whole east coast may be west coast too. It’s so worth it. You can get M tanks for home and E tanks for traveling. So far it hasn’t costed me a dime they do same day and next day delivery. I have called for a refil when less than a week has past and expected to hear my insurance rejected it but so far nothing!  I do recommend getting the 25lpm regulators I bought mine from https://www.wtfarley.com they sell on amazon as well if you have points to use it’s nice. Just put in the part number on amazon and it will come up. 

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Thank you @CHfather and @Freud for the extra encouragement on the O2. Surprising that my neuro hasnt even spoken about O2 tanks and we've already had a conversation about Topomax and Lithium (both of which I refused). I'm going to ask him explicitly about O2.

 

@spiny

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use caffeine or ginger during the day

Just got some good old ginger candies for myself. I like them anyways.

All in all, I'm more of the mind to make lifestyle changes, reduce inflammation (start D3 regimen) and if bear the pain of some low-intensity attacks if they're not too frequent. If they're too frequent for my comfort, I'll get O2.

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I would insist it, especially since you’ve talked about third line agents. That’s crazy!  I would go armed with a copy of the study that proves it works and bring literature that shows it is the number one abortive TX. Some one here can help with links I’m sure. I don’t have or know where to find them. I’ve seen them posted. If I wasn’t immediately post hit I’d search... sorry

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There are a lot of apps available to doctors to look up medically-recommended treatments for conditions.  One of the commonly-used ones is called UpToDate.  In that app, it says (with citations to medical literature): "For patients with acute cluster headache, we recommend initial treatment with either 100 percent oxygen or a triptan, in agreement with national guidelines and expert consensus."  I suppose the "or" in there can throw things off, but a rational discussion of efficacy, side effects, and other factors (cost, usage limitations) would lead toward O2, or, of course, both.  The JAMA article with the O2 study is here: https://jamanetwork.com/journals/jama/fullarticle/185035As I note here, there are reasons other than efficacy that seem to hold doctors back from prescribing O2.

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10 hours ago, CAClusterHead said:

Just got some good old ginger candies for myself.

Your ginger candies might or might not be strong enough and gingery enough to give ginger a fair test.  Strong tea is probably better, and you can add honey or other things to make it more candylike.  Fresh ginger cut up and boiled is the best tea.  Some people make it from powdered ginger, but that's a gloppy process.

10 hours ago, CAClusterHead said:

Surprising that my neuro hasnt even spoken about O2 tanks and we've already had a conversation about Topomax and Lithium (both of which I refused).

Many/most docs are a lot more comfortable prescribing meds than prescribing O2.  Lithium is a ridiculous initial suggestion.  The literature is clear that lithium is not advisable except for patients who are chronic, in part because the side effects are so undesirable and in part because stopping lithium often leads to severe rebound attacks. Topamax is less ridiculous, but not a whole lot less.  I would encourage you to try to find a competent (regarding CH) neuro, which you're most likely to encounter at a headache center. Or. if your current doc is amenable to your suggestions and willing to consider your input, you could stick with him/her, because if you stay at this site you'll know as much as s/he does about CH meds, and about all s/he is good for is prescribing things you can't get for yourself. If some of the possible  pharma treatment breakthroughs occur (e.g., if Lilly's new drug, Emgality, lives up to some people's expectations), you'll need a doctor to prescribe them if you want them.  By then, you might be very effectively managing your CH with mostly-non-pharma treatments.

Edited by CHfather

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6 hours ago, CHfather said:

about all s/he is good for is prescribing things you can't get for yourself.

This is the only reason I'm staying with my neuro at the moment. He is a vending machine. To be fair, a practicing neurologist's understanding of an ailment is only as good as the number of patients they encounter. With 0.1% rate of incidence of CH, it is no wonder they dont know the whole spectrum of treatments available.

 

6 hours ago, CHfather said:

Fresh ginger cut up and boiled is the best tea.

Okay, I'll stick with this basic form when at home. Any recommendations for nice strong gingery things to carry at work (preferably dry)?  I dont care if its super hot -- I can handle it :)

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1 hour ago, CAClusterHead said:

To be fair, a practicing neurologist's understanding of an ailment is only as good as the number of patients they encounter. With 0.1% rate of incidence of CH, it is no wonder they dont know the whole spectrum of treatments available.

I would differ with this.  Once the diagnosis is made, there are plenty of resources that list the evidence-based treatments, usually in priority order.  I feel like they owe it to their patients to at least take those few minutes, particularly given the amount of suffering that CH causes.  It feels to me like a professional responsibility of being a physician -- when you don't know what you're doing, you find out or make a referral.  

1 hour ago, CAClusterHead said:

Any recommendations for nice strong gingery things to carry at work

The candy that's been recommended is by Ginger People.  It is very gingery.  I think you can get crystallized ginger candies in the bulk sections of some grocery stores or health-food stores.  There are probably plenty of fully satisfactory kinds.

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Thanks CHF you’re a freaking wealth of knowledge. My parents are super supportive in every sense of the word but other than a simple web search one day reading and then explaining the nick name at dinner. They just rely on me to do all the research. Probably bc I have a medical degree...  I am so grateful for them but you are a saint!  Edit:For the community as well!  You are such an asset for those that come here. For some one without CH your dedication is admirable!

Edited by Freud

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