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JavanHead

Hey All - CH Going on 40 days now... Just wanted to say Hello!

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CHfather,

Thank you for your kind, assertive and meaningful words. I WILL look into the oxygen. I am understanding more each day that it very well may be necessary to have a high quality of life if I acquire some oxygen and get to it.

Caffeine has worked most days recently, but you're right - it has left me feeling jittery, anxious and irritable.

A question about oxygen - Is inhaling oxygen for CH headaches similar or the same as taking a full speed run for example? I noticed that a few weeks ago when I had a really bad one coming up, I got up and immediately started running on a trail right outside my house...

I probably only ran for about 7 minutes but I was running fast hard. When I stopped (because my dog had to pee) - I had noticed my headache get probably 25-40% better, but it still was pounding so I took the excedrin I had in my pocket and walked back and waited it out about an hour until it was completley gone.

Anyways - I still had more in the tank and I always do. As in - I could run at my near-max speed for 30 minutes straight if I had to - and longer, much longer - at a more normal pace.

If I became a trail runner and ran literally 365 days out of my life - obviously it would improve my health in other areas, but would that aid me in preventing CH at all? I would guess no, because O2 is an abortive and not a preventative, and I would probably have to suck more air than just running..

Anyhoot - Zomig is a triptan, got it. Triptans are bad and can promote rebound headaches. Similar goings for steroids - and I definitly don't want to get into the business of taking those regularly either. I was just hoping there was a wonder-drug out there that produced NO side effects and everything was going to be just fine! I know that is not possible, just being humerously optomistic :)


And thank you really for your responses and your sternness. I am NOT taking this disease/condition lightly and I WILL do what it takes to get it under control. I WILL PROCURE the vitamin D and other supplements today, probably before my neurlogist appointment.

As far as the mushrooms - I myself am not averse to taking them. While I have NEVER taken them with such high frequency, I am up for the challenge and don't mind the feelings that come with the MM.

In closing, thank you, thank you, thank you. Please do not get frustrated by my stupidity or my naivety. I am new at this and figuring it out one day at time. I welcome any and all responses. :)


Jon - thanks ! I will fucking listen!! Really appreciate you guys!!

Batch - appreciate it man. I have it in my inbox and will read through it in it's entirety shortly!


CHfather - Thank you for sharing the beautiful story about you and your daughter. I am so sorry to hear that both you and her suffer from the same condition; though it sounds like it may be a sort of a rocky bridge that helps keep you together as well.

When I start on my hunt for the 02 I will stay away from the concentrators - I have heard that they don't go up to a high enough LPM.

FunTimes - thanks for the tip and the additional recommendation on the O2 man. I have a few welding buddies and a few doctor friends so hopefully I'm about to source some tanks and setups quite easily. Hoping for the best! Thanks again

Thank you again,

Listening Always...

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Javan,

People do find, as you did, that very vigorous exercise can stop an attack or reduce its severity. More than one person here has said that sex, with another person or solo, aborts an attack for them (others find that unimaginable).  But, as you say, it won't prevent an attack.  Some people have found that vigorous exercise triggers an attack.  As people here keep saying, it's different for everyone.

I don't have CH; just my daughter does. People here probably helped save her life; I'm just trying to repay a little.

If you have access to tanks and regulators, that would be fabulous. Maybe your doc friends can even get you a basic mask.  The type you want is called a NON-REBREATHER mask.  You can also order one from amazon or elsewhere online, for about $5.  There's a better one, made for people with CH, here: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit  It has a tube that you can use without the mask. If your medical friends are really good to you, maybe they can fix you up with a demand valve system (in which O2 flows instantly when you want it but not otherwise -- no reservoir bag to fill and empty as on other masks).

Edited by CHfather

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CHFather,

Thanks for the tips on the exercise, may try that out one day; though I'm not sure if I could ante up before it set in completely! ha.

And my heart goes out to your daughter, I hope she finds relief way more often than not.


So news from the Neuro: They prescribed me imitrex and told me to continue taking the verapamil, and the verapamil *could* be working as I haven't had a headache today yet at all - and I've only had one cup of tea, early in the morning.

I also went and got the Vitamins recommended besides the K and am currently following up with Batch - so I will start taking all of those, as directed soon.

The Neuro did not have any knowledge of MM, nor Vitamin D3 to prevent or treat cluster headaches, but did say that if the imitrex and Verapamil don't work; he would prescribe me oxygen - so that is a plus. He was actually most interested in my marijuana usage and was very surprised how easily I was able to get a hold of it...lol ? Maybe I need to find a new neuro..


But not until I get the oxygen! Also put me up for an MRI - said they would call me early next week to schedule it.


Haven't had one today. Feeling fine...

 

Thank you all and thank you Spiny for the error tip!

 

 

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Oh, and he said that the triptans CAN'T setup potential "rebound" headaches ,and that the excedrin CAN . He said he has many cluster headache patients and will research the MM..

Any thoughts on that?

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Oh, and he said that the triptans CAN'T setup potential "rebound" headaches

Ummmm...that would be BALONEY !!!...……..Zomig,   FOR ME did not....suma...for many,  HAS.....YMMV...either way. Consider them ONLY as a last resort.....

,and that the excedrin CAN .

Not buying that...……….aspirin and acetaminophen have been useful for shadows...NOT CH....have NEVER seen reported 'rebounds" from either...and I been doing this dance for 36 yrs...…………………..same for naproxen...……...

He said he has many cluster headache patients and will research the MM..

Oh golly I hope he is serious...cuz the site you are on right now is BASED on the EFFECTIVENESS of same...…………...

Any thoughts on that?

BTW...oxygen as a LAST resort AFTER verap and Imi are ineffective... makes me CRAZY ….I'll repeat ONE>MORE>TIME...then I'll shut up: oxygen is the PRMARY, FIRST, FOREMOST. most medically ACCEPTED and SAFEST treatment for CH that exists.....now, I'm out...……………..

Best

Jon

PS: D3......D3...D3....D3...D3...D3...D3...what ya got to lose whitewater? :)

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43 minutes ago, jon019 said:

BTW...oxygen as a LAST resort AFTER verap and Imi are ineffective... makes me CRAZY ….I'll repeat ONE>MORE>TIME...then I'll shut up: oxygen is the PRMARY, FIRST, FOREMOST. most medically ACCEPTED and SAFEST treatment for CH that exists.....now, I'm out...

It really is crazy-making.  I think for Jon as for me that's not just an expression -- I have this momentary combination of rage, frustration, and bewilderment that feels literally crazy.  And the thought that this son of a bitch has "many CH patients" that he's torturing for no fing reason at all . . . Crazy, crazy, crazy, crazy. 

Beyond that, Javan, first of all good on you for taking assertive responsibility for your treatment!

You can almost certainly split your Imitrex injections if you decide to get them.  They typically come in an auto-injector that shoots 6mg into you, but most people need only 2mg or at most 3mg. Here's a file about breaking open the injector so you can manage your own injections, but there might be newer types of injectors now that are harder to break open. Check youtube.  Here's the file:  https://clusterbusters.org/forums/topic/2446-extending-imitrex/   

I'd take a hundred-dollar bet that the doctor isn't going to "research" MM at all, or if he does, the results of his "research" will be negative.  In any event, he can't advise you about MM, and I think he's not even allowed to know you're using it.  Meanwhile Yale Medical School is doing a clinical study of the effectiveness of psilocybin on CH. 

 

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Funny. Yale and the VA are working together currently doing trials with MM. It is common knowledge in Neurology. The VA wants it to treat PTSD. Last I read, they were still taking volunteers.

And as everyone has said, O2 is a first line of treatment, not a 'Well, if this fails we will get O2 for you.' That is bunk. "Here, have some pharma that can destroy your body rather than O2 which won't.' Nope, that boat won't float.

Keep pushing and get onto the D3!!!!

 

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Thanks guys, will start taking the D3 regimen Monday or Tuesday.

 

One thing though - so I had planned on "busting" today - but yesterday I had zero headache until about 9pm, and even then it wasn't maddening. It literally could have been a caffeine headache or a shadow headache. I drank half a red bull and 20 minutes later it was gone. I then saw Meg in the theatre by myself and felt fine all night.

Came home, smoked some pot, took 10mg of melatonin and fell asleep. Woke up at noon. Felt and feeling great.

My question - I was going to BUST today - any recommendations against it? It shouldn't *bring* the cycle back, if it it's already on it's way out, right?

 

Maybe the verapmil is working...

Hmm


Thank you again and yes I agree Dr was a quack but at least he is willing to prescribe me oxygen!

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It's not likely that the verapamil is working. Usually it's a couple of weeks before there's enough in your system to have an effect.  Possible, just not likely. More likely that your cycle is ending.

I wouldn't go so far as to call your doctor a quack. He prescribed the right basic stuff -- verap and a triptan -- and even that is a lot more unusual than it ought to be. Not prescribing O2 first does push him toward some unfavorable category, though.  The effects of triptans on subsequent attacks and cycle length has been studied with different results. 

Sometimes using MM produces what are called "slapbacks" -- bad or more frequent attacks after doses. It's almost certainly not going to re-start a cycle that's ended, but you might not want to expose yourself to slapbacks unnecessarily.  Just my two cents.

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Hey CH, thanks man - and yeah I'm really not sure if it's working either. I honestly feel the same when I'm not having these headaches.

And so good news/bad(ish?) news - I didn't have on since about Friday at 9pm when I drank a red bull and it was gone.

Saturday early evening I busted, hoping to god that I didn't get hit while busting. Had a great bust, walked 7 miles, felt great and amazing all day. Went home and crashed.

Sunday woke up feeling slightly refreshed. No headaches all day. 

 

Today woke up in a *little bit* of a fog, felt like I had a "normal"ish headache but it was based in the front of my head kinda and it was just mostly pressure. Maybe a caffeine headache because of the previously 2 weeks daily caffeine usage and now I was weaning (or almost stopping altogether) all the way off it? Anyways, I drank a half cup of coffee and some unsweetened tea and my head came back clear :)

 

But then tonight around 8pm, what I felt was a *normal* head pain, got slowly and slowly worse until I could definitly feel a real deal cluster coming on. I'd say pain was about 3/10 on *cluster* scale - so not absolutely horrible but I filled up a cup of stove brewed coffee and chugged it. Within 15 minutes I started to feel a bit better and about 45 minutes it was completely gone.

I've sourced 85% of the vitamins and am just waiting on the vitamin K from Amazon. Hopefully that helps. Maybe the verapamil is helping, maybe not? Maybe the better diet and more exercise is helping too as the past few days I found myself running my dogs, walking more and being generally more naturally energetic since I hadn't been hit in a while.


In the process of writing Batch back as well via email.

 

QUESTION - Since I busted Saturday early eve - I should bust Thursday, correct? If I wait until Friday is that too long? I will ask on the "Share busting" thread as well - just wanted to quickly ask.

 

Thank you again and hope you all are finding some relief!

 

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There is a tendency among people with CH to feel that an attack is probably coming on but to hope it isn't, and to wait and see.  Many have learned to drink that caffeine as soon as they have the first sense of an oncoming attack. Might result in sometimes drinking it when it's not needed, but will also give a quicker abort if it is.  For many people, the first sign isn't even pain, it's just a "something's wrong" feeling that they have learned to associate with CH.

Please do post your other questions at "Share …."

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