CHfather reacted to Snazzy93 in Just diagnosed
Welcome! I'm new here too, although I've had clusters for 9 years now. This forum and the people on it are beyond amazing.
It's almost funny how close your history is to mine. From the times, and severity to the amount of time it took to actually get diagnosed. I really felt as if I was reading my own story lol!
Did they prescribe you with anything to abort the headaches when you have them? Sure the main goal is to avoid getting them all together, but the sad fact with clusters is that they're very sneaky, and you'll probably end up getting them here and there despite preventative measures. Oxygen has been my go to. Before the oxygen, I had nights that were beyond miserable. My bedroom wall will agree. (Two holes, one from a fist, and one from my noggin...) It's crazy how these headaches literally make you lose control of yourself, they're a wicked monster, but they can be controlled.
I would for sure scan this whole site, because there are so many stories and the advice is amazing. These headaches are different for everyone, so what works for someone else may not do anything for you or I.
Best wishes! Being diagnosed and educating myself here were the two biggest steps towards controlling these monsters!
CHfather got a reaction from jon019 in New need info
Dana' is right about different things signaling the end of a cycle for different people.
D3 regimen (what FunTimes sent you and what you found work, too): http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Frankly, it's very unlikely to help you with this cycle, but it will help a lot regarding future ones.
Strongly suggest that you read through this to be sure you're doing all you can right now and in the future: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ OXYGEN, energy shots, Benadryl, melatonin, etc.
CHfather reacted to Dana129 in New need info
It really depends on the person, me personally, my worst period is the mid point of the cycle, it gradually lowers in pain intensity and frequency once I’m passed the mid point, everybody is different, though I have heard the worst headaches are at the end for a lot of people. I can imagine you’re having a very tough time right now, so i think you should look into the D3 Regimen. It’s a list of non prescribed vitamins taken daily, it’s highly effective with an 80% success rate of either complete pain free living or reduction, I suggest you research into this, it is cheap, safe and by far the best preventative for clusters, much better then verapamil or any other med a doc will give you, if you look on the new users tab, you’ll find some VERY helpful info to help you break the cycle, busting is also very effective, but I don’t have much knowledge on that personally, the d3 regimen is probably the best thing to ever happen to me, i started it 3 or so weeks ago and it has pretty much changed my life, I haven’t felt so great since before my first ever cycle, even my remmision periods were nothing like this
CHfather reacted to Kizzie in Is ch linked to dental work?
I know I don't say much on here, but this I have to answer.
I've been chronic for 8 years, was episodic for 5 prior to chronic. I rarely used to get a day off from the beast, and my attacks lasted 3 hrs each, sometimes twice a day. Sumatriptans couldn't cut it because of the rebounds from having to use it every day. Other meds did not work for me. And my blood pressure is always low so I couldn't try that route.
My teeth used to constantly make me feel like I wanted to pull them all out. I would go to the dentist to be told nothing was wrong, so I quit going. Two years ago I had a root canal done in the 90's go bad and they decided to take it out. The next year another root canal went bad because the dentist had done it wrong. So a few months ago my new dentist took all my root canals out ( 2 more).
Much to my surprise, I am having LESS attacks, even though I'm considered chronic. I get 3 or 4 days with nothing but taking 5 Hr Energy when I feel one coming on that usually aborts it within 30-45 minutes. This is a BIG improvement for me. It has kept me from wanting to go be roadkill. I used to say I was going to go play in traffic because they were so brutal. Now I don't say that. I can live with 3 a week compared to what I used to have. That being said, I do get a migraine type headache that can hang on all day and just gnaw at you at times.
Dental does play a big part in your health, and you shouldn't ignore it. Teeth and mouth infections can kill you if let to go too long . It can get in your brain.
I'm not advocating anyone do what I did, but I had to speak out and say that it did help me. What is strange is that when I get a real hard banger, I still get some pain where the tooth used to be. I had to get partials for where the teeth are gone now, but by God it was worth it to me not to suffer every day as I did..
CHfather reacted to Freud in Need instructions for use of psilocybin, please!
I’d also recommend clicking on the blue new users button at the top of the page. Read the whole thing. You want to educate yourself on the whole process and how to ensure your comfort and safety. You’re going to want to buy a cheap but decent gram scale on amazon that goes to to the hundredth place for 100g and under. So it could measure 0.01g. That should be 15-30$ depending on the scale. This next part is copied from a previous pist I made in response to the same question as you:
“It is important that you are off all meds that could block the mm from working. Examples include many psychiatric drugs, triptans (sumatriptan aka imitrex or any drug in this class) steroids and a few others that escape me at the moment. You need to obstain from the usual culprit of triptans for 5 days prior to busting/ dosing. Microdosing does not work for clusters. You need to reach a threshold dose where you feel the effects of the mm but don’t necessarily have a significant trip. That “I’m almost tripping” feeling does it for most of us. This is usually achieved at doses of 1-1.5g. Some people can go as low as 0.5g but we generally recommend 1-1.5g. This dose is repeated 3 times 5 days apart. All the while no sumatriptan injections or any other blocking meds. During this time O2 is your best friend. Some people use energy drinks with success as well. I think that’s enough to get you started I’ll post some links in a bit to stuff permanently posted here that you should read prior to busting. “
If you’re dosing to prevent a cycle (are you episodic or chronic?) than people have found that dosing one month before cycle usually starts and follow up dosing every month there after upto and including the last month it usually lasts for. This has been most successful. If you’re chronic let us know and we can discuss things some more. Do a little research and come back to us explaining what you’ve tried, what helps, do you have oxygen... share your story so we can help you more.
CHfather got a reaction from jon019 in oxygen
Suggest you get a sense of all your options. O2 is essential, but other strategies, like the D3 regimen and busting, can also make a big difference. Please see this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
Note that Dave D says, "I'm one of the fortunate ones that have found success with O2 concentrators." Most people don't get real success with concentrators. In the file above, you can learn about (and further link to) welding O2 information. You shouldn't be denied by your insurance (unless it's Medicare, Medicaid, or another government program, which won't pay for O2 for CH), but welding is a good way to go.
CHfather reacted to FunTimes in WORRIED sick.
In addition to the oxygen I will also down a 5hr energy drink to help slow down the ramp up time of the attack. ad CHfather said your oxygen needs to be at a much faster rate. you can get a regulator online that will allow you to set it at 25 lpm and once the attack starts to level off you can lower it as needed. the D3 regimni helps a lot of people and will take a few days to kick in but no harm in starting that and staying on it all year round. I also add Benadryl to the mix during season changes and I take 20mg of Melatonin before bed every night to help with the overnight attacks.
Non of the things mentioned above have solved my issues and cured me but they all help a little. I was at one time getting kip 10 hits several times a day lasting up to 3 hours long. At this point I average kip 5 hits lasting about 15 to 30 minutes with occasional kip 8's. I also depended on the triptans taking several shots and pills a day and that also seemed to help with the amount of hits I get. I now save that for the real bad ones and only take them maybe once every other month when i really need it.
I am in the NE part of the US and have been getting hit hard the last 2 weeks or so, I think it may have something to do with the weather in this part of the country but like it always does things will calm down and better days are ahead.
CHfather reacted to MoxieGirl in How powerful is the mind??
Sorry to hear about your wife and your friend.
I do believe that talking or reading about clusters can trigger clusters. Other people on the forum have said the same. I know when I was getting a lot of clusters, spending time on the forums would trigger them. But, it's all very subjective.
I've never used O2. Will do if they come back in force.
Once your wife goes through all the more traditional methods, we'll still be here. Hope she finds something that works for her.
CHfather reacted to jon019 in How powerful is the mind??
...real interesting topic!....I've seen numerous clusterheads say they don't come to the forums when in remission because of fear of triggering....never heard that it actually happened...for me it made no difference... whether episodic, chronic or shadowy (now)….but I totally understand.....
….twice in my 38 YR CH career I was actually able to think away a hit...it was during a period where no meds were working and I was just so pissed and frustrated that I needed SOMETHING else....the effort was so exhausting and required such determined concentration that it was impractical for the 3-8 hits a day I was having...but I've always wondered...……..
CHfather reacted to Mjedwards409 in How powerful is the mind??
Thanks Freud. Yes I've done a ton of research on all of the options. (I've read all the stickies and probably gone 4-5 pages back on every section of the forum) Her first two cycles she never had more than 1-2 CH's per day, and both were less than 5 weeks. (Her latest cycle was 2015 before this one which she was able to cut to 2 weeks with the D3) She was only properly diagnosed this time around and she's trying some of the common pharma solutions. She's certainly open to the alternative therapies if this cycle proves to be longer/more stubborn than the first two. We were able to get medical O2 prescribed and got a few M-tanks for a surprisingly good deal considering insurance won't cover it.
She just got off a 2 week pred taper yesterday and she's been on 240mg of daily Verapamil since the day she started the pred. Super low I know and they gave her the ER and it wasn't until afterwards I read how immediate release works better. :-( She's been PF since the pred started but we both know that means nothing - her first cycle the pain came right back after the prednisone was done so we're under no illusion she's out of the woods. That said, she's also done the full D3 loading so we're praying that either the HA's will stay gone this time around or be reduced in severity that they can be easily controlled by the O2.
Long story short we're open to the other methods but she wants to try some of the more traditional methods first.
CHfather reacted to Freud in How powerful is the mind??
If there is anything I have learned about CH and people in remission and changing CH is that coincidences are common. Wether it’s a wackey “cure” someone thinks they found only to have their CH return the next year and the same thing not work at all. CH is always changing. It’s a crazy coincidence that he got one the same day. It’s stastically crazy that your wife got them and you knew some one that has them. There are only about 400k people in the US with them. I have a friend that went the welding O2 route and it just so happened the guy that owned the place has a son with CH so he could talk freely about what he was going to use it for. I mean what are the chances. I’ve won the lottery on a lot of medical problems and I thought my chances of winning the lotto are better than getting Chronic CH but here we are.... sorry your wife is suffering. Have you clicked on the blue button on the top of the page to see what this site is all about? There are other good options to get rid of the beast or prevent it in the future if you know when your cycle starts.
CHfather reacted to Mjedwards409 in How powerful is the mind??
Supporter here for my wife who is going through her 3rd cluster. A former coworker of mine who has since retired battled CH for nearly 30 years. He's in his late 60's and has been in remission for nearly 6 years and is now living his retirement dream golfing and fishing in Florida. He started the D3 regimen back in 2014 before his fall cycle started (amongst other things) and was able to drop all of his CH meds. He was always episodic with his clusters in September and October.
I called him two weeks ago to let him know that my wife was back in cycle and to get his advice on a few things, including Verapamil which he used to take. That night, after 6 years, my buddy had a CH and has had it nightly since. He has never had a CH outside of Sep-Oct in his life, and after a 6 year remission he starts getting hit the day I called him and brought up CH. This is amazing to me. (In a negative way) It makes you wonder just how powerful the mind and subconscious may be when it comes to pain, illness, etc. Is it more likely this is just a terrible, terrible coincidence? Luckily the CH's have only been once per night, and according to him haven't gotten over a 5-6 since they started. To my surprise, he had never tried Oxygen in his life before I brought it up to him, and he was able to obtain an E-Tank from a friend in the medical profession and has been aborting in 5-10 minutes. (So if nothing else good comes out of this, now he can proactively get Oxygen before his future cycles knowing it will work)
EDIT: I hope it goes without saying, but this is not to say that I'm suggesting the pain is somehow all in one's mind. After seeing my wife (who has an extremely high pain threshold) go through these, I have zero doubts that nothing we humans feel can compare to CH. My only curiosity being thoughts and theories on the mind being able to trigger the beast.
CHfather got a reaction from jon019 in oxygen
Well, don't keep it a secret, Dave. What is it? (I think you mean lower lpm rates (flow rates), right?)
For most people, spending $250-500 for a concentrator is definitely not the right way to go, when a pretty glorious setup using welding O2 would be possible at the lower end of that range, but if it works for you, that's what matters.
CHfather reacted to jon019 in oxygen
...ok, making a little more sense now (the supplier denial part...NOT the horrendous ridiculousness of Medicare not covering)...but the flat out "NO" from supplier is still puzzling if you are willing to self pay...sounds like they just hear 'Medicare" and don't want to mess with that in any way...because any competent national supplier would certainly know about O2 use for CH...it's in the medical lit as THE first line abortive...
...re welding O2...as related many times over the years on this and the ch.com site....contaminated O2 makes for shitty welds...welders and their customers DON'T put up with that...no way, no how....bad welds are dangerous and legally actionable. don't let the banged up, dull paint tank fool ya...it's the same O2 from the same "spigot"....just don't tell 'em you're gonna breath it...makes 'em all squiggly...……..
CHfather reacted to Headblaster in Hello - First timer
Have not posted in while -- But great news for me so far. I started the D3 Regime about six weeks ago. I am taking 15K of D3 and the rest that Batch has listed.
my 25-OH levels are below. Near the high end but not over the top. I have been completely pain free since the evening I started the regime. Thanks to all you busters out there!!
05/14/2019 VITAMIN D,25-OH,TOTAL,IA 95 ng/mL (30-100 )
CHfather reacted to jon019 in Anxious Supporter (Husband) Here - Are my views on CH Skewed?
Hiya Mj...feels weird to quote myself...but I'd just say (almost) the same thing:
Still true 15 yrs later....tho I'd say "manageable" is the proper word. The attitude part was learned the hard way.....and it was for survival. YMMV on how ya get there. I had a life, loved ones, a job, a career...and things to frigging do....and this CH shit was getting in the damn way and threatening to take all of that away. "Not gun happen...read my lips". I realized it wasn't gonna kill me, why should it disable me? My belief it starts with the attitude...and living between the hits....a plan comes with research and advises the right tools (one of 'em being right here)………...
CHfather reacted to Freud in Any ideas besides Rizatriptan, Sumatriptan or Verapamil?
Are you chronic or episodic? Are you taking sumatriptan pills or injection that stopped working. In general the pills are worthless and the injections or nasal spray are the best routes of administration. What dose of verapamil are you on. Quite often it requires doses in the 800-1000mg/day. You need to be followed by a cardiologist and see them after each dose increase to check your EKG and blood pressure.
As for the oxygen we have found that the standard 15LPM is not enough for a lot of CH patients. A lot of us buy our own regulators that go up to at least 25LPM. I wouldn’t count the oxygen out until you read up on it here. Sometimes technique makes all the difference. Some people hyperventilate and have better success. I myself found much more relief with the 25LPM flows. If you need links to some affordable well made regulators let me know.
And finally we get to alternative treatments which is what this site is all about. Click on the new users blue button at the top of the page. It will lead you to links about busting. Once you’ve read that stuff make a post in the theories and implementation section with any questions you may have. The alternative treatments are a very safe and effective way to abort a cycle or even prevent one.
CHfather reacted to ThatHurtsMyHead in Interesting info on legalization
Looks like Denver is voting on decriminalizing mm.. WOW!!!
I'm posting this in the general board. Just for an interesting notice to everyone. Please no discussion of personal use and we'll leave this in the public board for a bit.
CHfather got a reaction from Pebblesthecorgi in New here but not new to the evil!
I understand why you might feel like you're at wit's end. This sounds really awful. Not a doctor here, but it doesn't really sound much like cluster headache. Among other things, CH is not a 24/7 thing, and the pain tends to be most intense around an eye, and they can be brought on by stress or exertion but also have a life of their own. And they're virtually never helped by an NSAID like Toradol. There's a condition called cervicogenic headache (originating in the neck) that of course does seem to match up, although maybe the MRI etc. ruled that out. https://www.medicalnewstoday.com/articles/324108.php Hemicrania continua (HC) is another possibility, since it is 24/7, but again the symptoms and causes don't really seem to fit. The Indocin is probably meant to treat a hemocrania as a possible cause, but that's quite a low dose. Maybe the doc is being cautious and will increase the dose. (Many people get significant stomach distress from Indo, so it's often prescribed with something to protect the stomach lining.) Indo is essentially a stronger version of Toradol. https://americanheadachesociety.org/wp-content/uploads/2018/05/Hemicrania_Continue_June_2015.pdf The verapamil dose is also low for CH, but again, it's good medical practice to start low, monitor, and increase (people with CH can sometimes need 960mg/day or even more). (Anti-inflammatories like Toradol and Indomethacin might also be prescribed for cervicogenic headache, and of course the steroid injection is for anti-inflammatory purposes.)
Of course, if O2 might have helped in the ER, and if the doc thinks you might have CH, then O2 is worth trying and should be prescribed. Prednisone is also sometimes prescribed as a temporary treatment for CH, and it seems to me that it might also be tried, since it's an anti-inflammatory.
I apologize for being picky here, but while "cluster migraine" is a term that has been used by doctors and lay people, it's nearly meaningless as a medical term and has been pretty much abandoned. A person either has CH or has migraines (and some people have both), but they don't have "cluster migraines" unless they have symptoms of both at the same time enough that the diagnosis is too blurry to make. That's very, very rare.
CHfather reacted to Zookah in Becoming unmanagable
I did i have my o2 at 7 liters a minute for 10-15 works perfectly and i started batchs d3 regimen and i have only had one attack but thats due to missing a dose while i waited for the d3 from amazon so now attack free for 4 days and i cant thank everyone enough for the support ! But on his regimen im positive that if i keep my ng at 80 i will not get them everyday and that is a godsend!