CHfather reacted to JeffnTx in New memeber headache sufferer
The first response is good. Go see a headache specialist not a general md or neurologist.
Your pains sounds like Cluster HA, but they don't usually last days. Mine last 1-2 hours typically.
MY dad though has what are diagnosed as Cluster Migraines. Same symptoms, but his came in clusters and would last for days. but like other disorders there can be variations I suppose.
CHfather reacted to amon10 in Thank You
Just wanted to say thank you to all the fellow CH's I meet in Menominee Falls,WI this last weekend. You were all very friendly and helpful. After 25 years of suffering and only 12 with a diagnosis, l felt grateful to be able share with people that have "walked in my shoes". I hope with people like you no one never needs to walk the path alone.
CHfather got a reaction from spiny in Introducing myself
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!
CHfather got a reaction from DitkoNL in 5 hour energy
Very nice response from jon', covers the bases. I would say, just from observation, that most people like the chilled drink better . . . but there are some who prefer it room temp. Gotta find what works for you. There are people who go straightaway for the higher-caffeine shots (I can't personally see any reason to down an 8-ounce drink instead of a 2-ounce shot, but, again, some people do -- I suspect that either they think, wrongly, that the bigger drink will have more caffeine, or that they just started with RedBull or Monster and it worked for them, and they don't want to change). But I think starting with the 5-Hour Energy is the way to go. There's a list here of caffeine levels in beverages: http://www.caffeineinformer.com/the-caffeine-database
CHfather got a reaction from DitkoNL in Introducing myself
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
CHfather got a reaction from DitkoNL in Introducing myself
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.
CHfather got a reaction from sunjunkie80 in Introducing myself
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.
CHfather reacted to jon019 in 5 hour energy
For some, the combo of taurine (>1000 mg) and caffeine (>100 mg) can be very helpful
in aborting or lessening hit time....possibly even preventive if timed properly. (note that Redbull
is lower in both these ingredients....if using regular energy drink find a different, and probably cheaper
brand). The benefit of 5-hour is portability and ease of use...it's only 2 oz. I always have one in my pocket.
In my case I get better results with a very chilled energy drink...consumed rapidly....at the FIRST sign of a
hit....timing is critical.My belief that the cold had some beneficial effect, the sugar helpful (low blood sugar
can be a trigger for me) and the carbonation speeds up absorption.
Never had any rebound or 'crashing" experience...just that it didn't always work.....doubling up was
pointless.... and over caffeination unpleasant while "dancing".
CHfather reacted to sierra in New Here On third Cycle This year
Hi Jen, CHfather is one of the most knowledgeable, experienced people you will find when it comes to CH. Right now you need to think about the difference between aborting an attack and then preventing one. Your first priority should be to get oxygen now. Please read up on the attachments from CHfather....get the mask first then focus on the oxygen. Every area/doctor is a little different, some of us have trouble getting medical oxygen and just use welding oxygen. Once you have it you have to practice your breathing technique .....read the files and watch the videos. Oxygen is used to abort an attack, it will not prevent one. When used properly it can abort an attack within 10 minutes without side effects. Some of us have developed breathing techniques that can abort even quicker.
Do not waste your time with immitrex/sumatriptan pills or sprays, the injectable sumatriptan is a good abortive but leaves you feeling really lousy afterward and can only be used twice a day.
I am a little harder on the medical community than most here. I went through 5 different neuro's and only one provided temporary relief. Most of them have limited knowledge of CH and keep throwing hand me down drugs developed for other purposes at you while you continue to suffer.
Ask questions, there are plenty of good folks here who will help you. This is a damned awful disease that must be brought under control and closely managed if you want your life back.
Please get oxygen ASAP then come back to us with questions.....keep reading the files here you will learn a lot.
CHfather got a reaction from spiny in New Here On third Cycle This year
Jennifer, you really need high-flow oxygen (at least 15 lpm, often more) and a high-quality non-rebreather mask. It is very, very often prescribed wrong. If you have CH, a system like this is almost guaranteed to help you. Read more about O2 here: https://clusterbusters.org/oxygen-information/ The mask that makes a big difference is now called the Cluster O2 Kit: http://www.clusterheadaches.com/ccp8/index.php?app=cms&ns=display&ref=splash
Hyperbaric oxygen can help abort an attack, but it hasn't shown any effectiveness as a preventive. An optimized "regular" O2 system is what you want.
There nothing really "out of the box" about that lidocaine treatment. Lots of people try it. It's called an occipital nerver block, or ONB. I don't think it helps more than 10% of CH patients, from what I've seen.
The medical standard for pharmaceutical treatment of CH is verapamil as a preventive, and oxygen and sumatriptan (Imitrex) as abortives. Sumatriptan injections are the most effective form -- it also comes as a nasal spray (often effective) and pills (rarely if ever effective). Taking imitrex pills at night is not going to help much, if at all. Zomig is the nasal spray version of the triptan. Like I said, it's much, much better than the useless pills -- highly effective for many people.
Topamax can be effective as a preventive, but as you've seen, the side effects are yucky. I don't know what your verapamil dose was. Many people need a pretty high dose to be effective. There are side effects there also, which need to be monitored.
You should start the vitamin D3 regimen right away: https://clusterbusters.org/forums/topic/1308-d3-regimen/ It just might be the most effective preventive there is, not to mention that it generally has no side effects (and is actually good for you, in almost all cases).
You mention "steroid shots." Usually steroids (such as prednisone) are given in pill form, as a "taper." They can buy you some pain-free time, but are rarely lastingly effective.
How much melatonin are you taking at night? There are people here who go up close to 30mg before it helps them get relief.
Have you tried energy shots, such as 5-Hour Energy, at the first sign of an attack? They can abort an attack, or at least significantly reduce the severity of the attack (even in the middle of the night -- they don't keep most people up).
Most people who are regulars here use the "busting" method -- taking small amounts of psychedelic substances in a systematic way. Often the amount can be small enough that there are no, or very few, "trip" effects. You can read about that in the numbered files in the ClusterBuster Files section.
CHfather got a reaction from spiny in How Many Ya'll Are Chronic
Welcome, Ed', and sorry you have to be here. It's been rough for you, but it is going to get better. With people like spiny on your side, it has to, no way it won't. As spiny says, please tell us a little more about what you are doing now to treat/try to treat your CH. It would be best, as spiny says, for you to start a new thread, preferably in one of the more private areas, such as "Theory and Implementation." To start a new thread, click on that category from the General area, and at the top and the bottom right side of the board you will see a tab that says "Start A New Topic."
To answer the question you asked elsewhere, "MM" is "magic mushrooms," or mushrooms containing psilocybin, which you mention in your first post. As you say, those can be hard to get your hands on in the short run. But there are other substances you can use for "busting" that are easier to get -- legal to buy and possess -- and there are many other things you can do, such as the vitamin D3 regimen and optimizing your oxygen system, that will also make a big difference for you.
So, our new friend, let's get started making things better for you!
CHfather got a reaction from spiny in Feel like going crazy with these headaches
'debs, I'm willing to bet that we have had at least 50 people here who have said that oxygen didn't work for them. In at least 90% of those cases, having the right oxygen setup and using it right changed everything. I would really strongly suggest that you read the file I linked you to before -- this one: https://clusterbusters.org/oxygen-information/-- to be sure you had the right setup and were using it right. You can dramatically change your relationship to CH when O2 works for you.
I suggested some other things to you in my post above -- D3, energy shots . . . -- and I'd strongly urge you to try them. If you're at the start of a potentially long cycle like your last one, the D3 can help you a lot.
I'm hoping the steroid taper will help. A week is a pretty short time for a CH taper. 10 days to three weeks is more common. If that doesn't resolve your CH, verapamil is the most commonly prescribed preventive.
CHfather reacted to sierra in Feel like going crazy with these headaches
Welcome Debs, let's start with...have you seen a neurologist, if so, what was the diagnosis and suggested treatment. This place is a great resource for those who suffer with CH but we need to know a little more about your situation and how you are being treated. Please poke around the site for a while, read some of the threads that sound similar to your situation and some of the files on oxygen use and procurement.
Please post again with some info on how long you have had CH, is it a seasonal thing, did it just start etc. I am a rookie at trying to help others but there are plenty of folks here who have a far better understanding of CH and it's treatment than any doctor I have ever met. You will find help here, I did about 18 months ago when I was in a very dark place with chronic CH and they saved my butt.
CHfather got a reaction from spiny in Questions on O2
This video demonstrates a good breathing strategy for the mask, starting at about 8:00. After showing it with the mask, he also demonstrates with just the mouthpiece. I would only observe, particularly regarding the mouthpiece, that it's okay to remove the mouthpiece when you breathe out, as long as you don't breathe in any room air. Same is true for the mask, in my opinion.
Here's another one, using just the mouthpiece. The breathing instruction begins at about 5:30.
A well-known CH doctor recommends looking toward your feet as you use the O2. Some people find that that seems to help. Like spiny says, stay on the O2 for another 5 minutes or so after you've aborted the attack.
CHfather reacted to jrlsm in are any one in UAE with Cluster headache
I lived in Dubai from 2009 to 2013 and had a couple of cluster headache episodes during that period.
I went to the German Neuroscience Center, which was in Healthcare city.
They were quite helpful, got me an oxygen bottle as well as prescriptions for Verapamil, Imigran etc.
Good luck and all the best.
CHfather got a reaction from aneurysmalex in Cymbalta for CH control
It's really hard to imagine that the prodrin and advil are helping you. I guess you would know. The verapamil should help, and it's nice that the cymbalta does. Oxygen is the #1 medically recommended abortive for CH attacks. Many, or most, people here will tell you that it's a life-saver for them. It's not completely surprising that doctors haven't recommended it, because when it comes to CH, most doctors don't have a clue. This document about oxygen might be informative for you: https://clusterbusters.org/oxygen-information/
Many, many people get very good results from the vitamin D3 regimen. I think you should consider it. https://clusterbusters.org/forums/topic/1308-d3-regimen/
Also, many people find that drinking some kind of energy shot or energy drink at the first sign of an attack will often reduce the severity of the attack, or even abort it. Five-Hour Energy or one of those shots can be quite effective.
Melatonin at night, too. Starting at 6-9mg and working up as needed.
Some of these things might help.
CHfather got a reaction from dgman77 in Help needed
Good on the D3. Seems like everybody with CH is low -- in fact, most of the population is low. If I'm remembering right, Batch's target is 85 (you should not take my word for that, though).
So, if you have access to an unlimited supply of E tanks at $10/replacement, I think I would just get a 25 lpm 870 regulator overnighted so he has O2 in the short run, unless, as I've said, he's doing so much better that it's not urgent. As Jeebs has said, the prednisone can clear up a CH cycle, or reduce the severity of one, or the CH can come back with a vengeance once the taper is ended. As we've discussed, if you are the one who has to transport the tanks, an MM will be a whole different ballgame than an E.
CHfather got a reaction from aneurysmalex in My D3 Regiment with Links
Others here might have an opinion about your list, but I'm pretty sure your best bet is to ask "Batch," the originator of the regimen. He's great at responding to inquiries like this, but he doesn't show up very often in person at this board. I was told that he recently responded to a PM from here, so you can try that from here: https://clusterbusters.org/forums/user/17422-batch/ If he doesn't respond to you, let me know.
CHfather got a reaction from aneurysmalex in What if you could have no headaches?
In your circumstances, I think you are not an idiot for thinking those things, and I am very sorry that you are suffering so much. Most people here have found one way or another -- through busting, oxygen, D3, melatonin, energy beverages, and even some pharmaceutical medicines -- to not be in the same awful situation as you. Are you interested in exploring any of those things, or do you feel that you have exhausted all the possibilities?
CHfather got a reaction from dgman77 in Help needed
Jeebs is a very wise and observant guy -- though I'm sorry he seems to have been right about this.
I'd suggest calling your O2 supplier to review what the new prescription means -- including at least one M tank that they will have to replace (they're heavy). They should give you two Ms and at least one E, plus a cart/stand. At higher flows, your hubby is obviously going to be going through O2 more quickly. I would recommend ordering that Harbor Freight regulator (or going to get one, if there's a store near you), if your supplier will only provide a 15 lpm regulator (or if you have to keep paying that exorbitant monthly amount for a regulator).
I think you're wise not to up the lithium, even though the current dosage is kind of low for CH treatment. At least let's see what the D3 does, and how manageable it becomes with the O2, energy shots, and other non-pharma strategies, such as melatonin. The typical medical recommendation for CH is that lithium should only be prescribed for chronic CH, because of its side effects and because severe rebound headaches are common when lithium is withdrawn. Has he ever taken verapamil or another blood pressure med as a preventive? It would be surprising to go with lithium without first having tried verap.
There are risks associated with the D3 regimen, if it is overdone (way overdone). The guy who developed it, whose screen name is Batch, has examined its ins and outs for several years, with lots of data from actual users. Batch is just about the nicest and most generous person you could deal with. I'm going to send you his email address in a PM, and you should really feel free to contact him with any questions (like, why the magnesium, or what's the risk of kidney stones). He will write back to you promptly, I'm sure.
I'm pinning some big hopes on the O2. It can take awhile for people to really figure out how it will work best for them. I think you said you ordered the ClusterO2 Kit, which was formerly called the O2ptimask. Here's a video about how to assemble it and how to use it.
CHfather reacted to Bejeeber in Help needed
It would be so nice if the D3 had this quick of an effect, but my guess is the prednisone taper is more likely what gave him the night off (or at least is a significant contributor), so you'll want to be on guard and brace yourselves in case the CH reasserts upon taper down.
And slack, dg? NO, you are a hero in my book.
CHfather got a reaction from dgman77 in Help needed
Not normal (the apparent effect of the D3) but who knows? Nothing "normal" about this condition, and sometimes people do get very quick results. Fingers crossed here with you.
Most of us have found that we trusted doctors way too long before starting to search on our own. It's my experience (I'm also a supporter) that sometimes some people with CH become very despairing and even resistant to learning about new things that they might try, because they have had their hopes raised so often with nothing to show for it. So you did get on it; that's the important thing. I'm glad you found us!