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Introducing myself


DitkoNL
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Hi, I'm Dit and I'm 55. I'm here to learn, share and offer my experiences and support.


 


I had my first cluster episode in spring 2003. Before it really started, I woke up one day with a sudden rash all over my body (no itch). That went away over the next couple of days. Then, within a weeks time, all of my joints were suddenly flaring up. I remember that especially my hands and feet were sore. So I went to my GP, who did some bloodwork on reumatism, but he ruled that out. By the time the results were there, things were back to normal. I was puzzled about these unfamiliar conditions in such a short time frame, but my GP said he saw no connection and considered them to be 'freak phenomena'.


 


Then the Monster came out. He stayed with me for 6 weeks and was just going in remission when I was finally properly diagnosed. I had no clue about CH and thought they were migraine attacks, so I got Imigran tablets that didn't do much for me. The pain would wake me up every night around 2 AM and keep me busy for a few hours.


I had to wait 5 weeks before I could see a neurologist, and he told me I had most likely suffered from CH, given all my symptoms (timing, location and duration of the pain, droopy eyelid, nasal congestion, urge to move, what have you). So I read up on it and it all made sense, even the flare and the joint pain, which may have been connected with histamine release. I dreaded the next spring, but the monster stayed away. 


 


Guess I'm one of the lucky few because the Monster stayed away all those years. Until this spring that is. He returned early April and he's got the same agenda. He visits me every night around 2 AM, but this time I have Sumatriptan injections from my current GP. They do the trick within 5 minutes. The only difference is that I see no signs of remission this time and I'm past my 6 weeks now. Instead, I get more attacks, once ore twice during the day. But when I'm awake I can usually fight them off with coffee, energy drink, movement and distraction. I know there isn't an unlimited supply of triptans so I keep those for the night attacks, they are the worst.


 


This coming week, I have another appointment with my GP to discuss a more structural approach. I've seen my chiropractor twice. He said my atlas (C2) was mis-aligned but so far his corrections have not had any effect on my condition. I'm looking into acupunctural treatment as well. In fact I'm looking into anything that can help me to fight back the Monster. I'm interested in your experiences.


 


Thank you.

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Chiropractic and acupuncture probably won't help you.  Might be worth trying, of course. Some people get some relief. It's not a "structural" problem.

You can split your injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

OXYGEN!!!!  OXYGEN!!!!  OXYGEN!!!!  https://clusterbusters.org/oxygen-information/

The "D3 regimen": https://clusterbusters.org/forums/topic/1308-d3-regimen/

Melatonin at night, starting at maybe 6-9 mg and working up if/as needed

Maybe a pharma preventive.  Verapamil is usually the first choice.

Busting: Look through the numbered files in the ClusterBuster Files section and ask questions

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Hi Ditko,

 

Agreed with the input from CHf.

 

And since you're looking into anything that can help you fight back the monster, I would suggest prioritizing looking into what so many of us have found to be the most effective preventive, bar none: Busting (warning: pharma can block the therapeutic effects of busting).

 

I'm saying this especially since it is 100% legal there in Amsterdam where psilocybin truffles are sold in shops. You could try searching this forum to see reports from others in The Netherlands.

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Just a quick word to add here. Sumatriptan is known to increase the number of hits and/or prolong a cycle for some who take it. So, it could be part of the problem. Verapamil is usually the best preventative in Pharma. You are started on a dose of X. Then, it is increased incrementally until relief is attained. O2 is usually your best friend for aborts. Non-toxic and very quick aborts with proper flow and breathing techniques.

 

And, of course, there is the 'morphing' problem where your CH will just change on its; own which may be part of what is happening.

 

I am very sorry that it returned for you.

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Good Morning,

 

Not sure where to post my "introducing myself" thread so hopefully replying to this post is ok seeing that it originally started as an introduction post as well. 

 

I am Kelly. I am a 35 year old female and in April of this year, I got diagnosed with these bastards. My first one was on February 5th of this year and they are still going strong.. I think I had a cycle in 2014 but an ER doctor misdiagnosed them as migraines (Oh how I wish he would have been right). I have had three children naturally and I would choose childbirth over a cluster headache any day of the week. Anyways, last night was by far the worst one yet. I was driving home and all of a sudden my hand looked weird on the steering wheel, I knew what was coming. Luckily, I wasnt far from home because this time, my vision was wonky in both eyes which is new to me. I usually always have problems with the vision in my left eye but never both. I got home, took a shower and mentally prepared myself for the hell that awaited me. My headache came and it was almost like it was seeking revenge of some sort. The pain was awful. Enough background, I am preaching to the cluster headache choir. My question is, where do I start? I have a prescription for oxygen and I am picking that up today but when do I use the oxygen? When my vision gets wacky? Any information would be helpful. I am definitely scared that these have taken a permanent spot in my life and its affecting my life. How do you all cope? Do you work? Is there any light at the end of my tunnel?

 

Thanks in advance,

Kelly

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Hi SunJ,

 

Just a couple quick initial thoughts:

 

Permanent spot? NO! Well at least not a constant spot, since so many CH'ers have had impressive success preventing entire cycles, our prevention tools will only continue to get better and better, and it's not like you're a chronic CH'er anyway.

 

Sounds to me like you started at exactly the right place for an abortive, O2 (hopefully high flow 100% O2 with advanced breathing techniques).

 

Typically, next up for the most effective, and thankfully non-toxic, preventives would be the D3 regimen and consideration of busting.

 

One of our pals here, Dan, was featured in a National Geographic segment on busting:

 

http://channel.nationalgeographic.com/drugs-inc/videos/magic-mushroom-medicine/

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G'mornin Kelly!

Welcome to the community! Sorry you had the need to join us!

It would be a good idea to start your own thread in the general section but I'll be glad to answer your questions (and ask a few as well..lol).

Great that you're in the process of obtaining the oxygen...it's used as an abortive measure, you need to get on it at the very onset of an attack....most folks need a flow rate of at least 15lpm delivered via a good non rebreather mask, preferably the optiO2mask available at the ch.com store for around $20. I routinely abort hits in 5 to 8 minutes.

Many find that slamming an energy shot or ice cold energy drink containing caffeine and taurine at the first sign of a hit helps.....melatonin helps many cut out some of the nocturnal hits.....and many of us have found success "busting" with various indole ring substances which you can learn about in the numbered "buster files"

As to coping, working, ect....once you have Oxygen in place and have learned how to use it effectively your life with ch will become much more manageable....I worked thru 27 of the 32 years I've had clusters....not always a cakewalk but doable....and, yes, there is light at the end of the tunnel...there are several studies presently in progress on new treatments for clusters by several different entities!

Dallas Denny

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Kelly, you have a prescription for oxygen but no other prescriptions?  Not Imitrex or Verapamil, for example?

Hit the O2 as soon as you feel an attack coming on.  It's not clear to me how big the gap is between your wonky vision and the attack itself, so you might have to experiment a little.  (Blurred vision/aura, while not completely uncommon, are not present for many or most people with CH.) You should probably read this for some tips about breathing strategy and to be sure you are getting the right equipment: https://clusterbusters.org/oxygen-information/. You might want to call the oxygen supplier before they come, because mistakes are often made: You want oxygen in tanks, not a concentrator, and you want at least one big tank (an M tank) and at least one smaller one for portability (an E tank).  You want regulators that go up to at least 15 liters per minute. I say "regulators," plural, because the big tank and the small tank use different kinds of regulators.  And you must get a non-rebreather mask.  This might all be new to your supplier, if they don't have other customers with CH.  When they bring you the equipment, try to get them to set it up for you and give you the basics of how to use it.

 

Tape up any open holes in the mask you get and remove the strap. Hold it to your face to breathe in, remove it to breathe out (being sure you don't get any room air in).  Hold the air in your lungs for a few moments before you breathe out.  Look down toward your feet as you do this breathing.

 

Also at the beginning of an attack, try quickly drinking an energy shot, such as 5-Hour Energy.  That usually speeds up the abort.

 

The D3 protocol, as Jeebs says, will make a big long-term, and maybe short-term, difference.  You can read about that over in the ClusterBuster Files section, where you can also read about busting in the numbered files, for which, as Jeebs also says, you are very well positioned since you're apparently not using any pharma meds.

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WOW! Thanks everyone! I really appreciate all of the replies. I have spent most of my morning a blubbering mess, the aftermath of these are definitely not a walk in the park either! I am pretty certain that these are clusters but I am not 100%. I am a female which I know is somewhat minority in the CH world. I definitely without a doubt have vision changes (blurred vision, loss of vision, double vision, etc..) before every single headache and each headache lasts about an hour to an hour and a half with stabbing, prodding, throbbing pain on one side of the head (almost always right side) and I get a stuffy nose and it hurts to even open my right eye the next day..Does that pretty much rule out migraines? Also, once I get a headache, the next few days, I have a residual and annoying pain on the affected side in which I had my headache. Is that common for CHer's? Thanks again for all of your replies. I feel better knowing that there is somewhere to go for support, advice and questions. 

 

I did get a prescription for oxygen but not for anything else. I have a follow up appt on May 23rd, it sounds like I may need some injectable sumitriptan! 

 

Also, I had an MRI done without contrast but I watched a podcast and it sounds like I should request an MRA to rule out carotid artery dissection and also request an MRI with contrast of the pituitary gland to rule out any lesions in addition to also requesting a pituitary lab workup. Is that reasonable?

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Thanks everyone for your advice & replies. And welcome to you Kelly.

I put the chiro and the acupuncture on hold for now. My first priority now is finding a good neurologist, getting the oxygen & maybe Verapamil so I can quit the Sumatriptan. I'll also look into the vit. D and Buster files.

I got some material from a friend who works in a hospital and Sunday I last night managed to split two injections into five, of 0,2 ml each. Administering the injection wasn't as scary as I thought it would be and the smaller dose was just as effective. The best part is that didn't have an attack last night so I'm keeping my fingers crossed that the end of this cluster is in sight. Thanks y'all for being here.

Namaste

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Kelly, I don't think your symptoms rule out migraines.  The women thing is, I think,being altered as more women are accurately diagnosed with CH, so that's not a big factor for me arguing that maybe you don't have CH.  Aura is somewhat rare with CH -- studies have put it between 2% and about 20% (a big range, I know; I don't really trust the 20% figure, but 2% seems low).  Stuffy nose is pretty common with migraine, and so is eye pain.  An hour to an hour and a half once would have been considered pretty long duration for CH, but we've definitely seen lots and lots of attacks that long and longer.  One distinctive characteristic of CH as opposed to migraine is that people having CH attacks can almost never sit or lay still.  Since I'm not a doctor, I'll stop there. You can look up the list of CH symptoms using google, of course.  The oxygen might be a good test, since it usually does not help people with migraines much, or at all.  The sumatriptan helps both -- most CH meds are hand-me-down migraine meds, but not oxygen.

 

I don't know about the additional tests you mention, but they sound reasonable.  A couple of folks have indeed found pituitary growths that could be managed.

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Ditko', hoping for good things for you to continue.  Good work on splitting those doses!

As Jeebs said, you're in a great position for busting with truffles, something that has helped lots of people with CH, so do look at those busting files -- and do seriously consider the D3.

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Thanks again for the replies. I am so information hungry right now..I might be creating false hope that I can lay these freaking headaches to rest but I am willing to listen to anyone that is willing to offer any information, advice or life saving tips. I have a definite new found respect and admiration for all of you that have lived with with these beasty monsters and still function. I am still trying to figure out how I am going to continue being a wife and mother that is worth a shit. Does anyone have pain that lingers after the headache? It feels like I spent the night in a boxing ring last night? Normal for most of you? Does any OTC pain medication work for the "after pains" of a cluster headache? Thanks again everyone! I have so many questions and you all have been so fabulous in offering up information. Truly- Thank you so much.  :)

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Kelly, the after pain you speak of sounds to me like what is often referred to as shadows, which are common.

 

Headbangers have found ways to suppress shadows, such as ......ginger.  :)

 

As a person who is willing to listen to anyone, it sure is fortunate that you ran right into people who are long, long LONG time studiers of everything that can relieve CH, and constant observers of how well things work among the CH populace. IMO they are without exaggeration some of the world's foremost lay experts on the practical realities of fighting CH!

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Thanks! I find it enlightening and terrifying as I learn all of the CH vocabulary... :huh:  At the same time, I find it re-assuring that I am not crazy and all of my signs/symptoms/feelings are real and finally validated. And shadows are a bitch!  :angry:  If anyone can elaborate on the ginger thing, I am game! Ginger tea? Grated ginger? Ginger supplement?

 

As always, Thanks! ;)

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ginger tea, ginger candy . . . i suppose grated ginger if you could stand it.  Here's info from another source:

>>>A teaspoon of ginger simmered in a cup of water, sweetened to taste, is a pleasant way to hold off the shadows for a couple of hours. Ginger doesnt dissolve well, so simmer the powder or finely chopped ginger root for a while, and keep stirring while you drink.

In hot weather, a very strong ginger ale or ginger beer can do the trick enjoyably. Look in health food stores or delis for brands such as Reeds Extra Ginger Brew, Ginger Peoples Ginger Beer, Natural Brew Outrageous Ginger Ale or Blenheim 1903 Hot Ginger Ale. The usual ginger ale used for mixers, such as Schwepps or Canada Dry, is not strong enough.

A company called The Ginger People makes strong ginger candy in several varieties (www.gingerpeople.com)<<<

 

Some people have found that OTC pain meds, such as Excedrin Migraine, help with shadows.

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I have found a cure. I believe it has become more known. Magic Mushrooms! I started having cluster head aches in 2006. I vividly remember the first one I had. Brutal!

In 2008, after being diagnosed, the doctors at the "Headache Clinic" prescribed all kinds of drugs, I was taking 30 pills a day, oxygen, Imitrex, Relpax, Steroids.None of it worked. Oxygen actually made my headaches worse, and the imitrex just masked the pain. My "shadow headache" was always there. Until my girlfriend discovered the :Shroom Method" 2-1gram doses a week apart and my cycle is broken, my headaches stop.

I believe that the way they work is that when taking the magic mushrooms, you get really stoned and the drug completely scrambles your brain chemicals. When you come down, your body has an "automatic reset button" and resets all of your chemicals back to their normal levels. So, in my opinion Cluster Headaches are simply chemical imbalances in the brain.

I just started a cycle about a week ago, took my cure and bam! Gone! It works every time! I usually go into cycles about twice a year (Solstices).

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You're a most fortunate person, 'Mot.  May your success continue.

You're announcing this here as though it would be news -- Do you realize that the people who created this site (not me; people long before me; great and courageous people) discovered and popularized the mushroom treatment, and took a lot of risks and fought a huge amount of resistance to do that?  Your girlfriend would not have found out about it to tell you if it wasn't for those folks.

Your experiences are rare in many ways, from oxygen making your attacks worse to being able to end a cycle with two 1-gram doses.  For the good parts of that, you can be very thankful and, as I say, you should be very thankful to the folks who helped make it happen for you.  Best wishes for continued success. 

Your theory about how shrooms work to treat CH is probably a little off, but who needs theory when you have such a good thing going for you!

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