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ClusterBusters

spiny

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  1. Like
    spiny reacted to CHfather in Vitamine D3   
    Your friend can't get nearly enough D from foods.  Batch's recommended minimum daily dose of D3 is 10,000IU.  Your friend would have to eat between 5 and 10 pounds of salmon in a day to get 10,000IU (depending on whether the salmon is wild caught or farmed).  More than ten pounds a day of fresh herring; more than 20 pounds of pickled herring. More than 6 tablespoons per day of cod liver oil. 
    Pills are a lot easier.  https://www.healthline.com/nutrition/9-foods-high-in-vitamin-d#1
  2. Like
    spiny reacted to Batch in Coronavirus PSA   
    To All,
    The following might be of interest given the growing hysteria over the coronavirus. The coronavirus, enterovirus (colds and flu) and rihinovirus (colds) responsible for upper respiratory infections are all about the same size and shape with the same propensity and mechanism for spreading.
    Accordingly, for the CHers on the anti-inflammatoy regimen, adding a gram or two of vitamin C a day can help. For CHers and Supporters not taking this regimen, taking at least 5000 IU/day vitamin D3, 1000 mg/day Omega-3 fish oil and 1 to 2 grams/day vitamin C can help immune systems combat upper respiratory viral infections.
    For reference this combination of vitamins and minerals has an NNT of 2 in preventing viral infections.  The NNT = The Number Needed to Treat to prevent one case of the viral infection.  From CDC data, the best matched flu vaccine has an NNT of 12 to 40.

    Take care,
    V/R, Batch
  3. Like
    spiny reacted to CHChris in Prescription Frustrations - long rant   
    @Rush
    I think the 125 cu ft tank is the perfect balance between size and portability.  The tanks are fairly large, but I can carry them around without issue.  I fill my E tanks off of them and also have them set up for home use.  The rough conversion is that a 125 cu ft tank has almost 3500 L of O2 (close to the volume of 6 E tanks), and that can usually last me a couple weeks.  If I have a really bad hit (or get hit at night), an E tank is not quite large enough to kill it.  Having the extra capacity in the house and ready to go is of great comfort when you're getting hit a lot.
    Also, I had a good experience getting an O2 Rx while traveling to Orlando a few months ago.  I had absolutely no trouble getting E tanks delivered to my hotel room, and only had to fax them the Rx. The company is called Orlando Medical Rentals.  They appear to be setup for serving vacationers paying out-of-pocket, so it might not be cost effective for someone who lives in the area.  But I thought I would pass along probably the only good experience I have had getting service from an oxygen supplier.
  4. Like
    spiny reacted to Dana129 in I think I caught the beast before it caught me   
    Well, after obtaining my supplements before the headaches surfaced I wasted no time doing the loading dose, my last shadow was on the 26th of December, since then, I was PF with the use of energy drinks, and now, I have my supplements, and am starting to feel good, going to be staying away from alcohol for a bit
  5. Like
    spiny reacted to CHChris in Newly diagnosed CH   
    @CHfather is absolutely right, listen to everything he says. 
    I can't stress enough how important oxygen is for the treatment of CH.
    I can't say for sure you have CH, I am not a doctor.  But I think CHFather is right that you should treat it like you do have CH and would strongly recommend you try out oxygen.  I suffered with CH for 7 years before I got O2, and things completely turned around for me once I did. 
    Imitrex is a good starting point, but I can abort a headache with O2 with no side effects in about 10-15 minutes.  Imitrex makes me feel tired and terrible and can make things worse if you take it every time you get a headache (every day).  
    My understanding of how oxygen works is that it has vasoconstrictive properties that cause the blood vessels pressing on the trigeminal nerve to constrict (get smaller) and stop pressing on the nerve.  I am not a doctor, however, and this may not actually be the case with oxygen.  Not a lot about how it works is actually known.
    At any rate, some of your symptoms sound like what happens to me.  The hard thing here is that nobody has the same symptoms and triggers.  Like @jon019 said, we are all different, yet the same.  2pm is a normal headache time for me, I call them my "cluster times" (mine are 2pm, 6pm, 10pm, and 90 minutes after I go to sleep). I can practically set my watch to it.  There are others that are triggered by any number or combination of things, and you are going to have to find out what yours are.  Some of the medical literature says clusters don't have triggers, but that is not true.  For example, alcohol is a trigger for a great number of us. 
    To make matters more complicated for you,  you describe other symptoms that are not necessarily unique to CH.  Some of what you describe we know here as "shadows," and there is almost nothing in medical literature about them, but most of us have them.  There is a feeling in your head before you get hit with the intense pain, and it acts as a warning about what is coming.  When the pain comes it is searing or hot and located behind your right eye.  That pain starts migrating into the orbital area and reaches down into your sinuses and your jaw on the same side.  That is because the trigeminal nerve attaches to all of those places, and is the nerve that causes our cluster pain.  (CH is one of a group of conditions known as Trigeminal Autonomic Cephalagia)
    Also included with the cluster attack is a profound tension in the neck.  This created issues with my diagnosis of CH, because it is part of the mechanism in migraine as well.  I have seen no medical literature on this, but anecdotally I have a few cluster buddies that talk of their "cluster knot" in their neck or shoulder while they are in cycle and complain of the almost painful tension in the neck and shoulder.
    I also have sensitivity to light, especially where there is a large contrast (ex: oncoming car headlights at night).  
    As far as the sleeping it off goes, I can only do that with shadows after an attack.  However, napping is a big time trigger for me, so I can't take a nap unless I want to get hit with a 10 later that day.  When I did nap, I would wake up with that familiar feeling behind my eye.  This is present for me any time I take a nap, even if I was feeling fine before I went to sleep.
    Also, you need to start keeping a headache diary.  This is important because if it is CH, chances are that they will suddenly stop one day, only to return later down the road. There are 2 types of CH, episodic and chronic, and most people (75%?) are episodic.  Keeping track of your headaches, descriptions of the pain, what you ate that day, weather conditions, stressful events, etc. can help you determine what is going on.  That is good information to have even if you end up not having CH. 
    I apologize for this being so long, I hope it is helpful.
    I hope you don't have clusters.  But if you do, you are absolutely in the right place.  There are a lot of people here who understand and are happy to help you.  Your first step is probably to get some O2 to try. 
    A question for the experts: If you can abort your headache with oxygen, doesn't that indicate that you do have CH and not one of the other TACs or migraine?
  6. Like
    spiny reacted to Pebblesthecorgi in Just to put it in perspective   
    Personally I am not really into trying to compare pain or trying to "one up" others in the suffering department but this may help some vindicate themselves or at least give perspective when dealing with insensitive partners, colleagues and other riff raff.    https://www.mylondon.news/news/health/nhs-pain-most-painful-conditions-15701223?fbclid=IwAR2zqmTNLdESNWJcLH5nM3yZAz6tqEsXQ0ezoQ6Tm2e03khiXiYeTpe-Lkk
  7. Like
    spiny reacted to Edgar in Weak background pain after end of cycle?   
    Hi All, thank you for your replies
    I have been diagnosed with Cluster back in 2002 or 2003 and had every year 2 cycles per year, every cycle 6-8 weeks with 2-4 attacks daily. I was given triptans (imigran nasal) and naratriptan to block the attacks and it worked fine. The doctors told me that my cycles are too short to put me on something else.
    This was until 2013. In 2014 I had Remission the whole year and the next cycle came September 2015 and was long (10 weeks) and really bad in terms of intensity of pain and number of attacks. This time my neurologist put me on 2x naratriptan daily + 480 mg verapamil retard (2x 240 mg). After a week on verapamil it got better and in November the cycle ended.
    In 2015, 2016, 2017 and 2018 I was completely free of pain, full Remission, 4 years long. I almost forgot how bad the whole thing was.
    Until Early November last year when it all started with weak attacks at night time and worsened by beginning of December with really painful attacks 2-3 times daily.
    Again Naratriptan and verapamil, until Christmas. Now I am pain free again, so the cycle has ended, but there is this weak background feeling around the eye, that makes me worry.
    I have MRI on February 14th, I hope it will be OK and these are just the last signs of the cycle...
    I used Oxygen only once, when the pain was so bad, couple of years ago I went to the emergency and they put me on O2, which I think to remember helped me really.
    I'm thinking about taking for some 2-3 days again verapamil to see if this background noise will disappear.
     
    Thank you all for your suggestions
  8. Like
    spiny reacted to ThatHurtsMyHead in Melatonin   
    sn0wh0p,
    I would ask that you try to keep posts to the topic of CH or helping those with CH.  I appreciate your passion for experiences you've had, but there are plenty of websites for those discussions.  Shroomery.org DMTNexus.com etc etc.  I really don't want to limit your access, or be forced to edit your posts.  
    Trying to enjoy or at least deal with taking our medicine is important, but it's clear some of your posts aren't related to CH and those posts really need to be put on those other boards.
    Cheers,
    J
  9. Haha
    spiny reacted to Dallas Denny in What if there WAS a CURE?   
    Lmao!  I caught that as well @Brain on fire......let's see now....I learned about welding oxygen from Marc from down in Bastrop Texas in 2007 on DJ's site.....this site went live in Oct of 2009.....this guy came along in his previous incarnation in 2015.....AND I can assure you we was spreading the message far and wide and loud and proud when he got here so I'm really not sure what he thinks he's taking credit for.......BUT THAT AIN'T IT.....and in the eternal words of Potter,  I call BULLSHIT!!!
    DD
     
  10. Like
    spiny reacted to FunTimes in o2 noob help please   
    xBoss, sorry to see yo back here..
    This regulator will work on E tanks
    https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1
    This one will work on the M and M60 tanks
    https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1
    The mask can be found here
    http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
  11. Like
    spiny reacted to Rod H in o2 noob help please   
    Oh yea I always chug some caffeine on the way to the o2.
  12. Like
    spiny reacted to Rainmaker in Amazon Smiles   
    I just switched my Amazon Smile account recipient to be Clusterbusters Inc. Thank you for all you do for us.
  13. Like
    spiny got a reaction from kat_92 in Prescription Frustrations - long rant   
    What sized tank do you have Kat?
     
  14. Like
    spiny got a reaction from CHfather in Prescription Frustrations - long rant   
    Jost, I sucked the cutting tip on our welding setup with a wet wash cloth over the tip the whole first cycle I knew about O2! Just dialed the regulator to the flow that I needed at the moment. Only turn on the O2 not the Acetyline. It worked great till I got my Clustermask and my own tanks in the house. If you rent a tank, then you have to have it filled by the company. If you buy it, you can have any welding O2 supplier fill it.
    The dog sure misses those trips since I got setup in the house!!  
  15. Like
    spiny got a reaction from Jost in Prescription Frustrations - long rant   
    Venting is a good thing! Especially when you were treated so rottenly! Not unusual though. It is very infuriating to be put in a position of fighting for a non-destructive med when they will happily pay for one that can be destructive! Sounds stupid, no? 
    The best of luck with Airgas! Hopefully someone who has fought this battle and won will help us out here. I just went with a welding set up.  
  16. Like
    spiny reacted to Christopher w in Vitamine D3   
    I have been on batch’s regimen for a few years now and am completely pain free. I have been reading posts on this site and just registered. Just completed survey. Thanks batch. I have passed this info on to the few others I know who suffer.
  17. Like
    spiny reacted to kat_92 in Sumatriptan where has this been all my life   
    @20yearslater welcome! This is my first time with Ch as well (started in July). I had very dull headaches for 3 months at a time and then they went away for 3 years! And then BAM. Back again. So I am thinking they are getting worse over time. I would start the d3 regimen! It’s a lot to type out but search for the info in the bar and you’ll find all the info you need. Many people have success with that. I have avoided sumatriptans because I’ve heard they can make cycles longer and more intense. That might be why your headaches are coming more frequently....or the cycle is just ramping up. It’s hard to say. Typically people with O2 use that as a first line of defense and the sumatriptans are used when O2 is not available ( in your case bring them to work!) I hope you find the forum helpful. I’ve gotten more help here than from most doctors I’ve seen (5 neurologists at this point...scary how ignorant they all were) good luck! 
    Kat 
  18. Like
    spiny reacted to Luis in Emgality   
    My neurologist gave me samples and told me to take 1 injection of 120 mg every 8 hours,I think.  The website says that the first dose for clusters is 3 100 mg injections given back to back. From what I know emgality is not a triptan so it doesn’t bind to the same serotonin receptors as triptans and busting methods. Emgality binds to the cgrp pain receptors so that people don’t feel the pain of the headache. That is exactly what happens in my case. I cannot feel the pain of the headache but I can still feel when I’m having a headache. I feel the pressure, light sensitivity and dry mouth. I am still on cycle because I can feel the headaches but again not the pain. My second injection would be this coming Sunday. I hope my cycle ends soon but emgality is working. At least I can go to work and function.
  19. Like
    spiny got a reaction from Rod H in Me having a kip 8 cluster. Sharing is caring :)   
    Please do explore the O2 and read and use the proper method for it to kill the hit. Yes, it is w.o.r.k. You have to get the bad stuff out by doing a crunch when you exhale and then inhale deeply, hold it a bit, then exhale with force - like a crunch when exercising! Your breath should hiss at the end like when you do a breathing test. And stay on for about 5 minutes after the hit is gone. Just lower the flow rate to match your normal breathing pattern. It really is a lifesaver! 
    That video hurt to watch. So many days like that in my history. Your O2 should be your best friend!!
  20. Like
    spiny reacted to Tony Only in It's been a long time   
    I hope you can see our posts those who are not on social media. We have been building this association for a LONG time. I am hopeful to be able to jump out from the fast-paced social media sites and back into the more serene places such as this one. Many of you are often in my mind. Today was a special day and a day to remember it was you all here in this very forum that helped me in the very darkest of hours. I hope the absolute best days for everyone and for that day to arrive when no one has to survive Horton / clusters anymore. PF wishes !
    https://www.facebook.com/hortonassociation/
  21. Like
    spiny got a reaction from jon019 in HI   
    Yes, Verap works for many and very well for some. Others have it work for a while, only to fail in the long run. It is a first line med for CH. It lowers blood pressure, so that can be a limiting factor. What is your BP? 
    I took it for over a year and it worked great. Then I went off on the advice of my dentist. When I tried to go back, the 240mg I took per day did nothing. And my BP went down to 80/60 when resting. That prohibited an increase, so I ditched it. If it is not working, why take it? If you can take a high enough does, it usually works. 
    You can find a lot of info on busting in the closed boards. Many will not join in on the 'open' boards - the ones you see listed before logging in are the open boards. And the bots can access them. 
    Read the New Users Banner at the top of the page for a lot of info on the site. O2 is the best abortive, but it must be used correctly and at a flow rate of 15 to 25 lpm. Used incorrectly, there is little to no benefit. Doctors generally just prescribe and do not know how you need to use it for relief. Read the O2 page. It should be your best friend.
    I also suggest the D3 Regimen. It has been a lifesaver for many of us! 
    Have you been given a run of Indomethacin? There is a CH look-a-like that responds very well to that while CH does not. I bring it up because you are having up to 12 hits a day. How long do they last? 
    ATB  and Welcome!
  22. Like
    spiny reacted to Dallas Denny in Upping D3 intake   
    https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people
  23. Like
    spiny reacted to Siegfried in Indomethacin is doing something   
    Hi Kat,
    This is also my second attempt. I tried it a week before this trial and it also completely failed and had to discontinue after 2 days. After the second day, I woke up ill like a dog and started vomiting until in the afternoon. Then it got better.
    Now for this second trial, I did not have this side-effect. Only terrible pain in my stomach the first 3 days but that went away. I take Pantoprazole to protect the stomach. Now I am completely fine. Dizziness I have occasionally and it last around 30 min but I am fully functional so no big deal. I also took a more stringent approach. I have 3 doses per day so I keep as close as possible to one doses every 8 hours. Taking the pills with a glass of milk + some food is also better than take them with just a glass of water I feel.
    I read it can take up to 7 days to work so you have to give it some time to become fully effective. With me it took around 5 days to really kick in. Also the recommended doses are different. For CPH 150 mg/ day should be sufficient but for HC, they often need to go up to 225 mg/day.  
  24. Like
    spiny got a reaction from 20yearslater in Sumatriptan where has this been all my life   
    Welcome 20yYL! 
    Triptans can be a life saver. They can be really bad too. Normally, you do not take more than 2 6mg in 24 hours! 
    You can split the dose though. Type something like 'splitting triptans' into the search bar and you will get several threads to look at. 
    Where is your pure O2 from a tank? That should be your first line of defense! No bad side effects and it works quickly. Like triptans, it does not prevent the next one. But O2 won't destroy your body either and that is a definite plus! And narcotics really don't help with CH! You can take a lot and it will not help most, if not any patient! 
    I was having a scope, under sedation and OUT when I got a hit. They had to give general to finish the scope! Talk about shocked docs, they were! They did have the O2 for me and I killed it as soon as I woke up. 
  25. Like
    spiny reacted to kat_92 in New to the forum - in cluster season right now   
    @Banjer Taylor welcome to the forum! I too just recently joined in july. I was very fortunate to obtain oxygen pretty early on. It was very challenging. Not so much to get the script, but to find a place that actually provides the tanks. I got the proper mask from cluster02kit and it works very well. I’m still learning the proper breathing techniques and everything. I got on the D3 regimen a month after I started feeling terrible. I still get a lot of shaddow pain and I’m sure the D3 has helped tons. I take extra fish oil to help with the depression. My next step is to try busting with mm. I would read up on that if I were you. I would absolutely put all your focus on getting that oxygen. It’s imperative to abort the attacks. You’ll hear back from more experienced members soon. @Batch has all the answers for the D3 regimen.
    take care 
    Kat 
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