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Tony Only

Cry for help

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This is a desperate but at the same time optimistic cry for help.

We had a CH patient gathering here in Finland last weekend. We met a patient who has been severely chronic for the last 16 years. He has 2 stimulators and (in my opinion) terrible medication history. He expressed that he is ready to try the alternative treatments.

The reason I am writing here is because although I know a thing or two about the alternatives his condition is so severe that we will probably have a lot of questions along the way. The first thing to try is the Vitamin D regimen. His vitamin D levels are awfully low. I am waiting for some basic information about the current medication and the CH history and will post here when I get them.

When I met him, I really, really felt for the guy and the first thing that came in to my mind where to ask for help is Clusterbusters.

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I will do my best to translate the reply I got from this man's wife from finnish to english:

"I try to remember the past before he went chronic, there was a little time as episodic but not any very clear cycle or pause in it, attacks came about a year before it turned completely chronic. We can notice the difference between good and bad times though, when in good phase there is only 2 attacks per day and in a bad phase (which happens about twice a year and lasts around 6 weeks) attacks come all the time every 2 hours, day and night. Cortisone can somehow keep it little at bay. For years he has been using it 40mg/day ja in the bad times he raises it to 80mg/day and even up to 100mg/day in the very bad times...earlier he has been getting it directly in the vein in 1 gram amounts during 3 days, but that only kept attacks from coming for 1 day. Now there is so much problems from the cortisone that it is necessary to try to run it down, slowly and it has been bad all the time, the goal is to get to 10mg/day because they think that body's own cortisol production has stopped or it will take time for it to start again...he has not been able to drop it again like adviced and sometimes lifts it because he can not take any longer...

The current medications; Prednison 20 mg, Verpamil 200 mg 1x2, Neurontin 900 mg 1x2, Relert 40 mg for the attacks and medical oxygen (O2) and the other medications are for the side effects for the cluster medications: for an example Risodion for osteoporosis, Burana 800mg for aches, Nexium 40 mg for his stomach which is completely wrecked... I have been offering Vitamin D for him 50µg (2000IU) 3 tablets per day and Kalsidos-D which has 20µg in it plus calcium. He has not been taking these regularly because he complains about the amount of pills and that his stomach can not take it...

Once we had a doctor made us a list about what vitamins one should take but my husband did not follow this through because his stomach could not take it. (Omega3, D-calcium, Vitamin E and protein drink... something like this and total was like 15 pills a day)

From different medications we have tried (I don't know how well you know medications but i can look up the different brand names) Propral, Deprakine (too much side effects), Lithium, Neurontin, some other strong epilepsy medication equal to Neurontin but Neurontin was better, Lyrica, Tramal, Fentanyl patch, Morphine patch, cortisone all the time, Disperin 1g, Panacod, Imigran (nasal spray, tablets, injections helped but the side effects were awful), none of the pain killers have never helped.

There has been different operations, ganglia stellatum injection twice (anaesthesia through the neck), botulin injections, neurostimulator in the hypothalamus but not in use, another one in neck nerve but neither of the stimulators helped and this one is out of battery and we are waiting for the removal time, doctors offered us new more efficient stimulator...Maxillary sinuses have been broadaned by surgery, his nose has been straightened, received radio frequency treatment to the trigeminal nerve... would there be something else I can not remember... naturally we have tried cupping, acupuncture, "spirit healer" some kind of shaman :o) All kind of massages etc. Now my head is all empty, I will e-mail you more if I remember something important, this was not all the medications but these are the ones I could remember. This started around 1996 and in 1999 cortisone was started and has been used ever since with extremely bad results concerning his body (he is 6cm shorter, 20kg lighter, muscles gone, whole man is like paper, what his intestines look like I do not even want to know, stomach is shot to hell that's for sure) He still has pretty bad lifehabits (stress, eats poorly, always working what he can and when he is not he is thinking what he should do, very pessimistic about everything and we have also had a lot of bad luck in many places), smokes almost 2 packs a day, he would have a beer if he could but for years now it has not been possible. This was a long and confusing message....

So, this is the man we could really use help with. Any advices, and I do mean any, would be appreciated. My first reaction was that something has been keeping this up for 16 years. It would be very sad if it is the cortisone used for treatment. He is ready to try any alternative treatment there is. I think we need to figure out what is the reasonable thing to do.

I have already suggested to start the Vitamin D regimen since his levels were 39 nmol/L (european measurement). Thank you for taking the time to read.

MOD: So he has had DBS and Occipital stimulators, neither one helped. Occipital can probably be removed, DBS is too risky.

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Actually there was, in the 2nd paragraph. He has O2 and does not go anywhere without it. Sorry if it was a bit hidden there.

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TO, I'm sure many people have read this and, like me, have just thrown up their hands without having any idea what to do, particularly since real detox for busting seems so improbable.  So I'm just throwing out some thoughts here.

I suppose the D3 is the best possibility.  I suppose you have noticed that Batch is now recommending a very heavy early dosing of D3 for people who are quite low -- a supplement of as much as 100,000IU per week, as I recall.  Makes sense to me for a relatively healthy person (heck, the woman who cuts my hair takes 50,000IU per day all the time), but who knows what effects there might be for this fellow.  Cortisone daily since 1999!!!  (I guess we all might think that at some point that started hurting the CH as much as it helped, but it seems his withdrawal from it has been tough.) 

Looking at this as carefully as I'm able, it seems like the pred and the Relert are the only things he's taking that would definitely block busting, since some people have been able to bust with some success while on verap.  I wonder whether the intranasal ketamine that Ricardo and someone else (diamondmaker, I think) have discussed, might be tried in place of the Relert.  Might work better and, if I remember correctly, doesn't seem to block busting.

I know you're a fan of licorice root, and so I assume you considered that and decided it might be risky given all his other symptoms.

Sorry -- that's all I've got.

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CHfather, THANK YOU so much. I will pass this information forward and you already brought new wisdom that I did not know of. I am just looking for other opinions since I feel I am too "alone" trying to help just by myself. And I have the same very careful approach, this guy has been through a grinder and any moves in any direction must be careful and with real knowledge what one is doing. D3 is the first thing and this is actually Day 1 on it.

I met this man personally last weekend and this got the whole thing started. I know he has been though hell and still is there but he was also ready for detox time if it seems busting is what is needed to be done. The amount of gut and will power I sensed from him was amazing (and what could he have achieved if at some point given something else than the "wrong stuff"). He is a perfect example how treatment can "build up" and not in a good way.

Liquorice Root was not on my top list since I think more and more should be concentrated on the whole holistic approach, that treatment is treating us as whole and not focusing on our faulty hypos. I think understanding the herbal protocol and "embracing" it at this point seems too much plus he needs bigger "tools".

One more big Thank You. This is exactly why I made this post.

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I'll just pipe in with a question about the O2: Do you know if it is currently working for him, and if not, has he tried very high flow 100% O2, with a specialized non-rebreather mask (or ideally a demand valve system)?

If he hasn't tried this yet, I'm hoping it might help him get through a detox.....

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Tony,

It's never overlooked by this CH patient how you continue to share your gifts, talents, knowledge and hope while balancing your own reconciliation in the area of medications and their side effects.  Every single sentence resonates with your dedication to always look forward.  To that point, I wanted to tell you how it's an honor to know you. 

Half of this mans battle has been addressed just by the connection he's made with you.  Hope is 100% necessary.  It's what keeps thousands of CHer's who have finally made it into the "connection" phase alive, but beyond alive, we're also living a purposeful life again.  Managing the pain becomes part of the life we're living. For me, the hope instilled in me from you and our fellow supporters is an immeasurable component.  I credit this support system to returning the joy of life. 

I've also come to understand the importance of measuring the success's with self love and patience.  The goal of being pain free is always there, however I've come to understand that the brain, the neuronal system, the smooth muscles and it's system and both the venous and arterial systems have all been changed.  Every single attack is in effect, a reprogramming of patterns by these systems.  I didn't understand this aspect until I found the wonderful new neurologist/headache specialist just a few months ago.  His first question was, "Cindy, how long has this been going on?"  When I told him 5 years, the look on his face combined with the words of his next sentence, emphasized an urgency he clearly understood that up until that moment, I had not connected in my own head.  God, how silly I feel now.  Really, I just didn't realize what was actually happening in my own head.  New paths of norm were being created with each attack!

Because I'd always been episodic, and believed that the cycle would run its course and I'd be pain free again, I just didn't make the connection regarding the repeat information being instilled to be my new norm!  His sentence was wonderful.  He said, "We've got to get you hospitalized so I can run a Ketamine drip to stop this pattern of behavior now!"  It was an incredible moment of clarity.  This man got it!  And not only did he get it he was freaked out by the sheer number of years I'd been reprogramming!

So I tell you all of that so I can tell you this;

This man is blessed to have you as a supporter.  Yes, I am mindful of detoxing and all of the knowledge shared within these boards, but I believe if ever there was a time to implement the power of placebo it is now.  If I had to redo all of my "detoxing", I now know that I'd do it with a dose of magic.  Be it RC seeds, mushies or LSD. 

My memories of detoxing are the absolute worst days of my life and I believe, psychologically astounding fear played a role in the process.  Even if I did know the goal had purpose, the reality was, for me, that detoxing took a toll I will never, ever, ever forget.  To this day, I know I would have rather dosed (without detoxing) and believed that some of the medicine was getting through with an understanding that treatments would continue as a part of my life until the day the reprogramming of all those systems had been erased and I was the woman I had known years before.  I'm still working on being that woman and that's why I share what I share today.... much love to you.

Cindy

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Great advice and a great post Cindy!!

But there is still this elephant in the room...  how did the Ketamine drip work for you?  I am assuming that it helped you turn the corner?

Tony, having been in your shoes a number of times -- trying to help someone who seems to be beyond help, thanks to our (hopefully) well meaning doctors -- all I can say is, like Cindy said, you are on the right track.  Empathy and caution are most critical at times like this.  And from experience, I can tell you that it still does not always work out for the best.

I met this man personally last weekend and this got the whole thing started. I know he has been though hell and still is there but he was also ready for detox time if it seems busting is what is needed to be done. The amount of gut and will power I sensed from him was amazing (and what could he have achieved if at some point given something else than the "wrong stuff"). He is a perfect example how treatment can "build up" and not in a good way.

This is what I found most encouraging in what you said.  It sounds like he is ready to listen and do whatever it takes.  The road ahead of him will require that type of attitude, and then some!  I have helped bring more than one back from the brink, only to see them slide back again.

I wish I could offer you more advice, but at this point, I feel unqualified to do so.  You are doing the right thing in reaching out for help, and hopefully others that are more knowledgeable than me will offer their advice.  Please know that I am in no way trying to sidestep your problem.  You can PM me anytime, and I will do my best to help. 

Bobb

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Thanks so much, Cindy.  Powerful stuff.  And, as d'maker says, a powerful doc.  How'd you find him?  Is he someone that other people with CH in the Northwest (or anywhere) should consider seeing?  (And, yeah, as Bob asks, how'd that drip work out?)

Every single attack is in effect, a reprogramming of patterns by these systems.
  I guess this is the kind of thing I was wondering about yesterday in a post at another thread, where I was speculating that maybe busting takes longer (more doses) for people who don't have oxygen (or some other effective non-blocking abortive) than for those who do.  It kind of makes sense to me that maybe the neuronal pain pathways become "facilitated" (work faster and "better"--better in a bad way, in this case) each time there's an attack, and so it's harder for busting to negate those pathways.  This might be crazy talk on my part-- they might be completely different things, what happens in the brain's receptors and what happens along those neuronal pathways.  Just throwing out a thought if anyone wants to chew on it.

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I'm just imagining, based on my own 5 yr chronic life (the first 2 yrs on verapamil, gabapentin & O2 then actively busting the last 3 yrs) as to what Tony's friend, Mika is feeling.  I'll try to relate it back to Bob's question.....

But there is still this elephant in the room...how did the Ketamine drip work for you?I am assuming that it helped you turn the corner?

I haven't done the Ketamine drip (yet).  Without knowing I was about to find a gem in a neurologist, I had my own treatment plans in motion......the timing of my first appointment with Dr. Estavez coincided with a "medication holiday".  I'd been on 1mg-2mg per day of Sansert (methysergide) for the previous 6 mos.  98% pain free during those 6 mos!  Ah, but that damn drug holiday was looming so before my appointment I'd managed to find the one alternative treatment I'd never tried, LSD.  Dr. Estavez agreed, responding well to Sansert was a great indication for efficacy with LSD.  So that's been my June-July treatment plan!  3x!

I cannot convey in words what it feels like to have this guy on my team!!!!  What I do know is I don't have to 'splain those feelings to this crew  8-)  Here's the bio on Dr. Miguel Estavez at Oregon Neurology, Eugene, OR

There's more cool stuff about meeting Dr. Estavez....  I'll start a new thread to share more.

http://www.oregonneurology.com/html/physicians.html

I think the transition out of ones normal state of ill health (lol) into being a "patient" with this condition especially, drives us to seek out medical professionals to have in our toolkit.  The wrong one is incredibly damaging IMHO, mainly because of the hope lost.  But also because of the very real danger of prolonged neuronal reprogramming, prolonged use of medication and the nasty side effects and worst of all, going chronic.  Fragile, fragile, fragile moment in time when this occurs! 

Mika's story is a testimony to "you never know if your first attack is day one of being chronic". 

This community held my hand and lifted me up tremendously during those days.  And now your friend, Mika can experience the same new hope, especially because you went the extra mile of reaching out to him, his support person AND you told your story to the media! Wow.  I love that you did that Tony!!!!!  This is the crux of my irk celebration!!!!  tee hee

Jerry, you do bring up very interesting point and to me not at all crazy.  I think some of the "busting fans" who post in an almost zealot fashion on other social media sites intrinsically understand what we're talking about here.....but it's still a balancing act, isn't it?  Feeling the need to have a medical professional on your team based on the pain is So SO SOOOOO real.  I don't think it's a point that can be ignored.  Spreading the message of treating yourself doesn't reach those folks in the "Isolation Phase".  In the "Isolation Phase" you don't know you're isolated!  After all you're seeing a doctor, right?  In my mind, isolation occurs most often to the baby boomer generation because we weren't nursed on "Google"!

What I see happening and love, love, love is watching the younger generations of newly diagnosed CH patients, who've been trained to use Google almost from birth, skip the "Isolation Phase" (which does include a doctor, but doesn't include the internet patient group).  A phase which unwittingly brings about playing one of most perilous games of Russian Roulette..  Thank God this is phasing out!  These guys get into the "Connection Phase" as second nature...without having to experience what us other poor bastards, including Mika who didn't have this second nature "Google" programming developed.

Anyone whose been lucky enough to remain episodic during this transition is IMHO at risk of repeating my hard learned lesson.  My own 9 year remission period quadrupled my thinking that "This too shall pass" and I was more than willing to try the newest medication, which was verapamil, prescribed by my doctor.  In fact it's what I did count on.  I remember quietly assuring myself that by the time a new cycle started surely there would be a new miracle treatment available from my doctor. 

Who knows where I'd be today if on day 1 of my CH return I'd Googled clusters, found CB AND then trusted all the internet posts.  Boggles my mind! 

Of course, I pray Mika's results with the D3 and other alternative treatments work quickly.  I've seen others who've reported it did within days of trying it after 38 years of being chronic.  Having an open and honest discussion regardless of the time it takes to get back to a pain free life is crucial to Mika sticking with these alternatives.  This is where this community's knowledge, support and generosity completes the circle. 

Everything matters.

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First of all, Thank You each and everyone for your responses. I think I had some kind of good reply in my mind when I first read them and as usual, I should've typed it right away because now my brain is shooting blanks.

I think I PM'd to someone that "even if everyone around the patient can see the possibility and believe in a possibility of pain free life, it does not help if the patient does not believe in it". In Mika's case, he has had hard time believing there could be anything that could be done for him anymore but now it's the stories of other patients that have given him hope. It's just the conventional road that has ran him so "far".

He has O2 in use multiple times a day and (Thank God) it is still effective abortative. He has now been on D3 regimen for a few days but currently is getting even more attacks. We are hoping this phase will pass and at the latest blood tests will show what has happened with his D3 levels. Next plan is to do busting if D3 does not help, probably RC seeds first and mushies second.

I absolutely think the patient is the key, the hope, the support, "seeing the possibility". I even think you can to some extent alter your brain chemistry via your own thoughts. In this case we may need a hammer to help though.

I think people who start out chronic are wild cards where most of the stuff does not seem to apply as in others.

I have to say it once more - Thank You - without patient communities this effort would not have happened ! Will keep you posted.

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If I try to relate my history to this, my absolute worst was when turned chronic. I know some say it's easier because you don't have to worry about cycles anymore. For me it was vice versa, because earlier I could do a little something, when chronic pretty much nothing - my chronic state was made with drugs so it was extremely severe, not a many hours in a day I could function.

What amplified the "no hope" state was the medical field telling me that now that you've turned chronic, there is absolutely no hope anymore. Nothing in the world can ever stop these attacks, only make them maybe easier to withstand. This was the message for 2 years from every specialist and neurologist.

But, when I had first heard of Clusterbusters and busting I spent days just reading everything. And I had this belief right from the start (equals hope) that there are at least options, chances, maybe they will not work (and my care did not want to hear about them) for me but there is STUFF on planet earth, not all hope is lost. So in some way maybe I was/am naive and it helped me ? I did not even question anything because the message was so clear and "common sense".

I have been pain free now for over 3 years with alternative treatments. From chronic state. It's funny in a grim way that the folks who said it can not be done do not want to hear it out how it was done.

So if one traces back what has happened since, at the moment, in my life, in other patients lives around me (and I only mean the Good stuff), all can be traced back to this board and this community and that is something massively positive. One may not always see the impact CB has had for so many but it is always there, ever growing.

Awesome !

[smiley=vrolijk_26.gif]

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my absolute worst was when turned chronic.

I have been pain free now for over 3 years with alternative treatments.

WOW.  :o     [smiley=vrolijk_1.gif] [smiley=2vrolijk_08.gif] [smiley=thumbup.gif]

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Tony,

I read this and think of my CH as being a 30 minute tension headache. I feel blessed. You have done so much for so many in such a short time that I think of you as being three people rolled into one who works 24/7 for the community. You make the world a better place.

To Cindy, you are amazing. Google did save my life, but it came late to the party. Your analogy is so on target. I look forward to the thread about your neuro. As you stated, the isolation phase is the most horrible part of this condition.

spiny

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I will return to the original subject of the thread. I think we can say that Vitamin D did not help. Mika was able to get his Vitamin D level to 305 but still getting attacks just as much, day and night. The situation is pretty horrible, Mika has 3 very heavy medications which he is not able to detox from and it does not look like he could even lower them. My own guess is that the cortisone is keeping his condition up and it might have prevented the Vitamin D from working. Mika's adrenal gland does not produce cortisol anymore because of the years of external cortisone, so the doctors say he will die if he stops taking cortisone. When researching this, my own belief that cortisone is by far the most dangerous treatment for us has only become stronger, even when used as a short treatments. But I have also read some studies how people can affect directly to their HPA axis (psychotherapy is based on this) so the "power of thought" can do a great deal in cluster headache. I think that as long as the cortisone is involved, hypothalamus and the HPA axis will be in "full tilt".

http://en.wikipedia.org/wiki/Adrenal_gland

I am pretty clueless.

Here is the last e-mail I got from his wife:

"He can't be without cortisone because his body does not produce cortisol anymore, the doctors say he will die if he discontinues it, we have been trying to get down to 5-10mg per day which should equal the body's own production. He has been able to get down to 15mg but he is getting attacks constantly and his body does not seem to be able to move anywhere and his mental state is very very low. The doctors say it will be extremely difficult to lower the cortisone if he gets down to 10mg. I am hoping his own production will wake up and start producing cortisol again but there are no guarantees that will happen. But we must try to discontinue other medications, when he tried to stop the verpamil he got heart problems so he started it again and the attack treatment Relert also gives nasty heart symptoms when he is longer without it...it is very difficult here."

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Tony, have you given any thought to using alternative treatments to aid detox?  I detoxed in January, and tool black charcoal and a mix of orange juice with a teaspoon of cream of tar tar.  Weird...but it seemed to help. 

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I think I too would be looking to the experts in natural treatments related to cortisol production.

We've seen how the pharmaceutical based medical establishment can fail us in the CH prevention department, while the natural busting substances can aid us so powerfully.

I would hope there may be some similar results to be found in nature vs meds for adrenal/cortisol recovery. So sorry to hear how the meds approach has completely failed Mika.  :'(

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I will simply repeat the Ketamine suggestion... don't know how it will help with the complications of getting off other meds, but as an alternative abortave it may be useful in some way.

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I passed the ketamine info on the first time, I guess it is hard to get in Finland. But thanks to everyone again. I also consulted a herbalist from whom I got these advices, they may be helpful for others reading this thread in similar situations

"Well, in England they use liquorice root to lower cortisone dosages. Liquorice root up and cortisone down. The problem may be the raising blood pressure. I would add all kinds of building materials for the hormones: magnesium, chrome, zinc, B, C, D, iron (unless you have hemocromatosis), fatty fish 2x/week, protein, carbohydrates way down, a lot of vegetables to replace them. And I would fortify the adrenal glands in other ways as well: no stimulants (coffee, cola drinks), more nettle seeds, building funguses (Ganoderma etc.). This should make things at least easier."

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