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Long Remission Only to Return


charles87sf
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1 hour ago, charles87sf said:

Despite being told this doesn't occur due to injury, I began having the initial symptoms RIGHT after suffering a head injury.

There has been some study of CH symptoms developing after head trauma.  One study said "CH patients seem to incur more frequent traumatic head injuries during their lifetimes when compared to migraine controls and the general population."  (I can only see the abstract of this one, and it's not clear whether the authors think that these more frequent injuries directly cause the CH.)(https://link.springer.com/article/10.1007/s11916-012-0248-0) This one --  https://jnnp.bmj.com/content/91/6/572 -- is more thorough, and it seems like CH directly following a traumatic head injury can vary somewhat from "classical" CH.  I have no idea how you might fit in this picture, and I think you want to treat what you have as "regular" CH would be treated, but I figure it's worth knowing that this study exists. 

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7 hours ago, Shaun brearley said:

Charles so your not on the o2 know then ? 

...if not you should be....eliminates lotsa "regular" meds, no side effects, fast, easy, portable with some effort. cheap compared to triptans. of course, busting may just eliminate it all....and strong consideration of vitamin D3 regimen wise...

....that cyproheptidine (Periactin) mention was certainly a blast from the past....second med i ever tried way back in the 80's (no help). anti-histamine+ used when CH still referred to by some as "histamine headache". i suppose it might work for some few (some anti-histamines help some clusterheads) but none of the traction in the community one would expect if it worked for more than the few. still using? hope your  current neuro is reading more recent lit.....and is therefore willing to script OXYGEN...life changing for many a clusterhead!

Edited by jon019
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6 hours ago, CHfather said:

There has been some study of CH symptoms developing after head trauma.  One study said "CH patients seem to incur more frequent traumatic head injuries during their lifetimes when compared to migraine controls and the general population."  (I can only see the abstract of this one, and it's not clear whether the authors think that these more frequent injuries directly cause the CH.)(https://link.springer.com/article/10.1007/s11916-012-0248-0) This one --  https://jnnp.bmj.com/content/91/6/572 -- is more thorough, and it seems like CH directly following a traumatic head injury can vary somewhat from "classical" CH.  I have no idea how you might fit in this picture, and I think you want to treat what you have as "regular" CH would be treated, but I figure it's worth knowing that this study exists. 

And there, sports fans? Is the commonality of personality traits in chas ppls.

 Psychology in action.

But those traits i see as coming from the chas. So, don't go putting the horse in front of the cart ;(

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I look back often to the first day I felt the pain from CH. I had no clue as to what was going on. I remember the severe pain pulsating in my rt temple shocking me over and over again, going pale and sweating because of the new level of pain I had never experienced before. I remember the phone calls to the ER, the doctors, the shite show in its entirety. I'm still scared but nothing like what I was. I've turned or have tried to turn my experience with this mess into something to grow from (not sure I've grown a darn bit) but I know I move through each day a bit better than the one prior. The anxt not as bad, the fear not as bitter the continuation of remembering " I can't stop this but it will stop" has been so important to my mental health. Being lost without a clue is so hard. Having folks familiar with your own experience priceless! I suppose to wrap this rant up I should say that I don't believe any one medication or supplement regimen will work forever it is more of what @jon019 mentioned in the way that CH is ever evolving and we must evolve with it in new methods to fight this battle.. rant over..

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18 hours ago, charles87sf said:

The mild cluster symptoms started maybe 3 months after that. My clusters are always on my right side and the I took the door to the left side of my head.

Interesting to me as mine began about 3 months post concussion too. I was a mlid chronic with daily hits, or almost daily.Two years later,when it would get to be too much, I would head to the ER for some medication. They would look in the eye, seeing swelling that was indicated by the flattening or bulging in of the back of my eyeball, give me a good shot that would help me escape by sleeping as long as I promised to see my doctor or a neuro the next week. They had no idea what was wrong. 

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2 hours ago, Shaun brearley said:

I've always said I think it has something to do with head trauma,but I'm no doctor or neurologist so what do I know , and I guess some Cluster heads haven't had head trauma 

This should go under a new heading for head trauma. Anew petson wld prolly never find this unless he sat andcread ALL the posts.

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21 hours ago, Shaun brearley said:

Charles so your not on the o2 know then ? 

I am not currently on oxygen. I was never prescribed oxygen unfortunately. Granted, I never asked for it because I didn't know at the time of the doc visits. He gave me the cyproheptadine and the verapimil only. In my next round of visits, I will definitely push for oxy though if it helps!! 

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2 hours ago, Shaun brearley said:

I've always said I think it has something to do with head trauma,but I'm no doctor or neurologist so what do I know , and I guess some Cluster heads haven't had head trauma 

That they know of! In all reality, a very minor bump to the head can cause a wide array of issues later on down the road. We knock ourselves around all day as kids and don't think twice about it... Heck, we probably don't even remember some. Think about UFC fighters: They're getting popped in the head and face all fight long and then here comes the light tap to the chin or the graceful glance off the temple... OUT!! It doesn't take much. 

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16 hours ago, jon019 said:

...if not you should be....

What can you tell me about being prescribed oxygen? For example:

  • Typical cost with insurance? (That's IF my insurance will cover it... its pretty basic)
  • When do you start it? (The moment you feel a hit coming? During? Continue using after the hit?)
  • Anything else I may need to know? (I'm sure docs will give info, but I like info from those that have CH as well) 
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On 1/14/2022 at 2:10 PM, spiny said:

There is so much that we don't realize or connect till years later, you know? It took knowing that pregnancy can stop a Chronic dead in its' tracks to piece the bits together many years later. 

Does pregnancy  **always**  stop it?? I seem to get a flu bug and that seems to stop chas. I do have to 100% agree w u, spiny - years later one can think back and go.. "oh, well yes... now i see..."  when u just didn't at the time. 

Recently someone pointed out cha.com and i saw where they suggest using smaller amounts of injectable trex (to  extend rx, i think). I used thy t3 + ativan, both tiny increments to stop chas for 10 years - until it simply didn't work. And the chugging of monster drinks. ...  those 3 tx? And a 4th item - when i first came here, someone commented to me: "u don't understand. These ppl would shove anything in their mouths" - (to try to stop the chas).  Microdosing mushrooms...

Brings my thinking to believe that what we r dealing w? a human body is a water based vat of chemical reactions covered w skin. For those of us w chas? It can be influenced by very small changes in those chemical rxns. Say, caffeine, or taurine, or protein or mushrooms, or whatever.. and that sets off a chain rxn in the chemical rxns of life.  The pregnancy thing? Same deal - the breathing set up? - same deal. Drinking water? - same deal. Eating protein - same deal. Remember how i commented that the highest read content posts were the ones that addressed mouth entry?  (I was thinking e.d... wrongly..)  its the truth speaking out. Its abt something coming in via mouth caused chas, and/or mediated by something injested orally.

Anything  -esp small- that u can do that changes the chemical rxns in ur body? Will set off a chain rxn. Ultimately, it will affect the chas.

It would therefor follow that chas can be set off by an allergic rxn. Because each succesive time u r exposed to an allergen?  Ur allergic rxn will come on faster and stronger (exact mode of chas onset - yes?). Its how our immune system is set up to handle invaders that threaten life. Similar to the man who ate (bad = virus contaminated) chx? He wld have that chx rxn for life. 

Its a  *tell*  that statement..... "those ppl would shove anything into their mouths to stop this.".......... that means in translation? Its caused by something that entered via mouth? And/or can rly only be helped by sonething entering into body via mouth. Do u see that trueism?  

And whats odd, but still follows?  Is i said if i sometimes eat a bread product? I'll feel a tingle? And i interprete it as oncoming allergic rxn? And spit it out.  Ditto what shaun spoke of when he said - his wife can tell when one is coming on - Somehow - and it almost seems backassed - the allergic rxn is slowing waaaaay dooown. And thats what my chas r doing lately - slooooowwwwiiing waaaaay dwn. Which seems... odd, speaking of allergic rxns.

Its the mouth. Its oral ingestion via mouth - cause and 'll betcha - the cure has to come in via mouth, too. I dont kno why, yet.  ;)

altho fer sure, i get it that the reason chas ppl want to ingest A HUGE LARGE AMOUNT - of basically ANYthing? Is because thats how big and bad chas are. U gotta listen exactly to what ppl say, the stories they tell, the words they pick and choose to say, the truth is trying to come out. The truth is in their words.

Theres a saying n the med profession- listen to ur patient long enuff and she'lll tell u whats wrong w her. Listen longer? And she'll  tell u how to fix, cure, tx her.

Ditto cop work? Victim tells reporting officer guy was shirt and chubby? And the stret cop, cruidingvsimlessly around? Sees a petson matching victim's statement because..  .yes. hes short and chubby- exactly. Nit heavy nit fat not overweight  not big... short and chubby. 

Its the mouth here folks.

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36 minutes ago, charles87sf said:

What can you tell me about being prescribed oxygen? For example:

  • Typical cost with insurance? (That's IF my insurance will cover it... its pretty basic)
  • When do you start it? (The moment you feel a hit coming? During? Continue using after the hit?)
  • Anything else I may need to know? (I'm sure docs will give info, but I like info from those that have CH as well) 

I can't tell you about the cost, which varies greatly not only by region but also depending on what you get (how many tanks of what size).  Insurance should cover most or all of it. Some people have a hard time getting their insurance to cover it; others don't.  I don't think anyone would disagree that whatever the cost, it's worth it.  

Yes, you start it right away as a hit is coming, and you continue for some minutes after the attack has been aborted.  The sooner you start, the quicker/easier the abort is going to be.

>>>Anything else I may need to know? (I'm sure docs will give info, but I like info from those that have CH as well)<<< 

Plenty!  If by "docs" in your post, you mean "doctors," no way.  Won't help you at all.  You get O2 based on a doctor's prescription from a medical supply company.  Maybe that company will have someone to give you advice, but probably not. It's not complicated in its essence, but there are lots of things you can do to get aborts faster (related to, for example, getting some caffeine into you as you start on the O2; using an effective breathing strategy; having the right flow rate; and having the right mask and other equipment).  When you're ready, it can be discussed more.

Many documents here that you can read (e.g., https://clusterbusters.org/resource/oxygen-therapy-for-cluster-headaches/  and https://clusterbusters.org/forums/topic/1433-10-oxygen-information/ and the "Oxygen" section here https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/) and lots of youtube videos you can see by searching [oxygen cluster headaches].  In those videos, Bill MIngus is particularly helpful, but you might find others you like more.   

 

 

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53 minutes ago, charles87sf said:

What can you tell me about being prescribed oxygen? For example:

  • Typical cost with insurance? (That's IF my insurance will cover it... its pretty basic)
  • When do you start it? (The moment you feel a hit coming? During? Continue using after the hit?)
  • Anything else I may need to know? (I'm sure docs will give info, but I like info from those that have CH as well) 

Sorry can't help with cost or insurance side of things as I'm in UK and get it free on BHS over here :Dthank God, as for what to do with it . You hit it straight away as soon as you feel attack coming on . You need a non rebreathable mask you need air flow to be minimum 15L/PM exhale all the air in your lungs then inhale as fast as you can some people hyper-ventilate to abort an attack some people dont, you will learn as you go along . Once you have managed to abort the attack stay on the o2 for an extra 10 to 15 mins to prevent the attack from returning . A good thing to do is have some energy drinks close by so when you feel an attack starting shoot the energy drink down as you heading to your o2 it helps . Don't ask my why but it does 

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edit to add: posted before responses seen

Read these:

 

 

 

  • Typical cost with insurance? (That's IF my insurance will cover it... its pretty basic)

...no real typical cost, vast differences in coverage. had various ins over the yrs, if no coverage i met and made agreement with O2 shop Mgr and self paid. $10-14/e-tank. if covered they billed $42/e-tank and my co-pay was $14 (you can pay me now or you can pay me later). i forget what the M-60, my favored tank, cost. supply chain stressed or broken right now due to Covid, call around for $ and availability. i picked up and returned my own tanks which helped my relationship with shop. if delivered, get to know your driver and treat them like the valued partner they are. frequently can and will do things for you the shop won't. a welding setup if med unavailable will cost you a few hundred to start and whatever the refill charge. MANY clusterheads go this route and save lots of $ and hassle. is the same O2 from same spigot so is safe....

 

  • When do you start it? (The moment you feel a hit coming? During? Continue using after the hit?)

....you gotta hit the O2 fast and hard at the very first sign of a hit, any delay will slow the abort....too long and the abort will fail. i powered down a 2 oz 5-hr energy drink on way to tank. increased effectiveness dramatically. staying on 5-10 mins after abort to ensure hit aborted...

  • Anything else I may need to know? (I'm sure docs will give info, but I like info from those that have CH as well) 

....many docs don't have a clue and a disheartening number will not prescribe.....if you get one of those find a new one...preferably a headache specialist or one willing to learn what you need...

...i kept e-tanks at work and in car...allowed me to be out and about like a "normal" person. m-60 tanks at home because they lasted about 2-3 times longer. if welding tanks used, a compliment of small and large advised..

...gotta be a non-rebreather mask..the best and a treasured possession of mine available here: ClusterO2 Kit - Clusterheadaches.com - Online Store and is a steal at $25. 

...many will advise a hyperventilation breathing technique. definitely the favored and most successful but be aware other techniques also work...like slow breathing or breath and hold... or a combo. you need to try them all to find your bliss..

...i'm sure to have forgotten something....  someone else will be along to add

Edited by jon019
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3 hours ago, Shaun brearley said:

Sometime if your lucky you can abort the attack with the energy drink or strong black coffee without having to hit the o2 . I think in the US the best energy drink is the 5hour energy shot . Sorry don't know the brand we don't get it over here in UK 

Hot soaks also work for me. Every cluster head should at least try it. Works the same way, you have to do it ASAP or it won't work. I must have aborted 100 hits that way the last cycle.

Edited by xBoss
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7 hours ago, xBoss said:

Hot soaks also work for me. Every cluster head should at least try it. Works the same way, you have to do it ASAP or it won't work. I must have aborted 100 hits that way the last 

Not tried that yet . Instead of hot soak does a hot shower work ? 

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9 hours ago, Shaun brearley said:

Not tried that yet . Instead of hot soak does a hot shower work ? 

I used to do the hot showers when in massive pain and it helped. I'm not sure if I knew how to abort CH back then. I think the hot soaks work due to a big change in blood pressure or blood flow so the shower would probably work but maybe a little bit less effective. I have still not done oxy for aborts so this was my replacement. Def. getting a tank for the next cycle which seems to be coming soon because I'm getting muscle lock and tension lately.

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