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Thank you everyone. You've reminded me that there are options, giving me back some hope. I'll ask my neuro about submitting another authorization, and fight it if denied. The problem with my medical o2 supplier is they wouldn't lease me the tanks without the 2 machines... drove the cost way up to $230-280/mo. For the welding info and resource links -- thank you, very helpful. I'm less (or un-)concerned about cost, and more concerned about safety. But you all have re-assured me it's regulated...

It was very hard to get anyone to help or listen during the late 1970s to the late 1990s They thought I had sinus problems,even the emergency dept thought I was making up stories.I didnt even know till recently what I had wrong with me I thought it was the afrer effects from a blow to my head when I was 15. I thought I had a concussion.But I do have sleep problems to this day,but no attacks .Thank God

Thats Tylenol#1 with codeine.

I 100% agree with the advice given in the previous 2 comments @Leonardobjork!!! Clusters are a deep brain neurological disorder and the pain associated with it are the result of swollen blood vessels applying pressure on the Trigeminal nerve ganglion!! In over 20 years of being in online clusterhead communities I've never read anything to suggest that Clusters can move from the head to the chest!! I wish you the best in finding out what is going on! Dallas Denny

What he said ↑ Go get that checked out. Don's think this is cluster related

I have also seen on Craigslist and other facebook free stuff type places people getting rid of empty tanks they have from older family members that passed away or just found in the garage. I grab them and add them to the mix for getting refilled. I figured if they are bad the refill place will know and trash them. It just adds tot he supply chain if they are good.

I do not use insurance to get my oxygen. I just got the prescription from my neuro and took that to a medical supply store that sells oxygen. For me you can buy a small tank for 120 dollars, I live in Texas. Once you have your first tank, you can exchange the empty one for a new one for 20 dollars. I am sitting on a very comfortable 8 tanks at the moment. Is it expensive to start? yes. Is it worth it? yes. Oxygen saved my life.

Hi everyone just wanted to say hi. I have been pain free since 3 years ago thank the gods. I still have the seeds and still contemplate on using them everyday, but so far i have been able to wrestle my little demon down. How you might ask. Well Vitamin D3 protocol. I am also in a very strict anti-histamine diet. I eat chicken, potatoes and rice. Thats it. No seasoning only salt. Sometimes every few days I treat myself to a burger or something but besides that I eat those three things. It has been working for me. For those of few that are having a hard time with the clusters you may want to try it. I can actually tell when I have been having too much histamine in my body because I start to get shadows. I am getting pretty tired of just eating those three things so this year maybe the year of me trying the RC seeds...maybe. lol. Anyway, I hope that all of you are PF and if not I hope pain free days come your way sooner rather than later. Stay strong everyone.

You need to be checked out for something besides clusters. Like today, like right now!

I have had migraines since I was about 8 years old. Sometimes status migrainous and a trip to the ER, or a hospital stay. In my 40s I developed cluster headaches. The first four years I had them I did not go anywhere, because much like my migraines, I can not wear anything including jewelry because everything feels like it is constricting o2 and blood flow. Also I can't stand light or motion. I had written about it in a journal where I simply referred to the headache as brain pain. A week long event. The first time I went to the hospital for the headaches they mistook it for Ocipital Neuralgia. I was admitted to the hospital and seen by many specialists. The Neurologist was able to diagnose it as Cluster Headaches. Since then I was on things like o2, Emgality, Injectable Sumatriptan, ketorolac, etc... Anyway my Dr at a pain clinic sent me to a headache specialist, pain doctor. That doctor gave me (probably misspelled) Sphenopalatine Gnangalion Blocks. A catheter injection thru the nostrils. He also gave me over time more than a few ketamin infusions. My headaches are in remission right now. I am truly blessed and thankful. I am not so disolusioned to believe that my headaches are gone. But it's been 5, 6, years without migraines or clusters. (Though this year I have had 3 migraines, not as bad as it could be. Here is to hoping that I get another year off, from clusters and status migrainous

Hi. It's been a really long time since I been on here. Has anyone ever had this happen or ever heard of this happen. It's hard to explain and keeping it short but I'll try. I've had clusters since I was 17. Probably a lot sooner but not crippling. The older I've gotten the worse they've gotten. I'm 62 now. One day in my 50s I had crippling chest pains and ended up in the ER and they found nothing wrong. These pain came on as an attack and followed a schedule it seemed. I recognized the pattern. They were hitting me just like the clusters. My greatest fear now was to have both at once. Thankfully that never happened, yet. Still a fear of mine.Then one day I had the clusters start but the chest stopped. The cluster headaches were definitely the worst I have ever had. I was in agony for 2 months. One moth on the right side. I had like a days break then the left side started and lasted another month. Ever day all day and night getting an occasional 45min to an hour break here and there. When they finally stopped, my chest started again. They still come and go as the clusters. It's been almost 10 years now. No cluster headaches but now cluster chest pain. Though these can be crippling at times if they peak and you do feel like you're going to die, it's not a heartache but better safe than sorry. Back to the ER and all tests found no issues. I get these attacks regularly now like the clusters. This is a little bit easier to deal with since it's not my head. I found that with a high percussion massager in the right place on the ribs at it's start can keep it from peaking or bring it down if it has peaked but once peaked it's pretty bad and takes a while to get it down. This might of just been a prayer answered. I often prayed if I had to have these cluster headache pain, could it just be moved from out of my head to another part of my body like a leg or something. Well it looks like they moved out of my head into my upper body. They often start in a shoulder or armpit and can quickly move across the chest. If it continues it will get into the esophagus neck jaw under the tongue. Get hot flashes heavy sweating and nausea. Crushing pain. Ever hear of anything like this? I still can get a normal headache or sinus pain but it's rare but still scares me.

If you have them use them is what I would do. I would take them as close to the 5 days apart as you can but understand the weekday rush. If you are comfortable with the 1g dose that should be fine to stick with but if your ok you could up it to 1.5. I am not sure if the PPI would block any busting, I have taken a TUMS and not noticed the difference but that is slightly different. I would stay away from the lemon tec though

Hi everyone, I have a few questions about using MM as a preventive treatment. I have episodic CH and I’m currently trying to prevent my next cycle before it starts. So far, I have taken two MM doses of 1 gram each, spaced a 7 days apart, using during weekends is better for me due the rush rotine during weekdays. After the doses, I noticed an improvement in my shadows. The shadows became less frequent and less intense. My questions are: For someone using MM preventively, how many doses are typically recommended? Should I continue with additional 1 g doses, or is there a point where it makes sense to change the dose? I also have GERD (gastroesophageal reflux disease) and sometimes MM can aggravate my stomach symptoms. Has anyone used PPI on dosing days? Could it interfere with the effectiveness of MM in any way? I’d appreciate hearing your comments. Thank you!

Just to clarify ac and c is available over the counter here inCanada its Acetaminophen with codiene.

you can fight the insurance company, of course. i suspect they are legally required to cover it. it is said that a "certification of medical necessity" from your doctor will help. Tractor Supply could be a very good source. Google something like "welding oxygen" or "industrial gas suppliers." Many people use other big national suppliers, such as Airgas and Linde. You can look them up, too. this might help as you consider welding o2. Notes about welding O2 - ClusterBuster Files - ClusterBusters

To add to my story I became a vegetarian/ vegan right after my last attack.

Hi community, I had cluster headaches for 20 yrs from the age of 15 to the age of 35. I went numerous times to the doctor looking for a diagnosis including to the emergency dept to find out what was going on.No one could give me answers.So I ended up self medicating,with ac and c.Whenever an attack was occurring within minutes or seconds I would take the ac and c.Yes I would get some pain at the beginning of the attack but 20 minutes after taking the medication the pain would start to go away,then I could resume my life but being still exhausted after the attack was over. My last attack was unbearable at the age of 35 no ac and c would work,so after about 20 hours into the attack I decided to try and run this attack off.I ran for a good straight hour.I came home exhausted laid down in my bed fell asleep.Woke up and it was gone forever so far,29 years and counting.But I started cycling daily not long after my last attack 20km a day for years.Im still in remission after 29 yrs Horrah!!! Hope my story helps someone out there that is suffering with this condition.The pain there are no words to describe it.

If you found a medical oxygen company that would service your area and it is just the insurance that is not approving ask about out of pocket payment. I do not use insurance to pay for my oxygen and it is actually cheaper for me paying out of pocket. Still need a script from the doc tho.

@Sub I agree with DD, easy to get, just a little cost up front. The other pro, you own everything so it is there for you when ever you need it, no fighting with health insurance companies. I have had mine for about ten years, have not had to use it in four. But it doesn’t go bad it worked just as good after 4 years. There are Tractor Supplies in your state, that’s where I go. Tank was in the $350 range with exchanges about $60 depending on what size tank you can handle. Don’t worry they don’t want to know for most part, but any excuse will work. Most people in retail are busy just trying to make it through their shift.

I hear you when it comes to changing cycles - can be somewhat unsettling. Glad that you haven't had a full blown attack in a few weeks and that you have O2 on the ready. Heres hoping that your cycle is short lived and that it is over soon. On the D3 regimen side a couple of things could help tweak it and for that you'd want to have the follow up lab tests at the 4-6 week mark - you'd see where your 25(OH)D level got to and if within the target of 80-100ng/mL. Did you have that lab measurement and did the loading dose get you up into that range? Cheers, Craig.

Have a question. My cycle this year has been weird. Luckily I only get one every 3 years. They have lasted anywhere from 1 month to 6 months. This is the lightest cycle as far as pain Ive had. I am 7 weeks into it. Havent had a full blown ch in almost 3 weeks. I started the vitamin d regiment 3 weeks ago. Just took my second round of emgailty. Now for the question. My cycle usually gets real sporadic then is just gone one morning. This time I am still having constant shadows of about a 3. But atleast twice a day I have one that will spike to a 6 or so. O2 if I am home will stop it. My question I guess is the emgality and vitamin d just masking the bad pain and I am still in full cycle or is it actually trying to taper down and end. I have had a few days here and there I woulda bet they were gone and everything felt normal. Also Ive noticed any pressure such as a pillow on the back of my head will set off a headache this time.

G'evenin @Sub. I've been huffing weld ox for close to 20 years now. So, weld ox has got to be contam free or the welds won't be good......if an O2 supplier deals in both med and weld ox, both types of cylinders are filled from the same spigot......med tanks are vacuumed prior to filling while weld ox cylinders just get a "sniff" test. Costs are going to vary depending on location......when I began using it in Texas I was able to lease a large (48" tall x 9" dia) cylinder but sorry, I'm old and don't recall pricing.....when I moved to Okla I had to purchase my rig.....$300 for a full cylinder the same size as above, $50 for a weld ox regulator from Harbor Freight (last time I checked they were up to $75), and $25 for the clusterO2mask from ch dot com, and refills/exchanges were $23 ( it's been 4 years since it was refilled so not sure about current pricing. The cons: You can't tell them you're gonna breathe it....you're taking up glass blowing as a hobby or selling minnows....their biz is selling welding stuff so they really don't care....the 2 I've dealt with didn't ask me anything. As I said, no Idea what you'll run up against trying to source it in your part of the country. Hope this helps...any questions just fire away! Dallas Denny

Insurance company denied my medical oxygen. My neuro recommended welding oxygen as an alternative. Please, can anyone provide a starting point on seeking out safe, reliable welding-oxygen? Not necessarily looking for specific brands(?), but generally signs and what to look out for. I know literally nothing about this. Concerned about purity and unreliable equipment. In Connecticut if that is relevant.

Hey there Jimmy. I would say you sound like you have been doing the reading and I reackon you are onto something with the D3 regimen down year round along with intermittent preventative busts and hopefully it never comes. As for diet, there was that small ketogenic study - I just don't know about caveman diet, by that I presume you mean meat - and meat alone, I am not sure that the microbes in your colon would thank-you for that and I suspect in time we might see that the state and composition of the microbiome influences the disease in ways we currently don't understand. I am one for the D3 regimen year round and 3-4 monthly busting (more so than ever now given a recent 16 day cycle was aborted with the MM - 2nd dose). If only there was a magic prescription of things we could do to guarantee ourselves no cycles would come but thats currently a well-wish, best we can do is - as you say, stock up and implement those things that are tried, tested and true as per the community, be that traditional or alternative treatments. I think you'd be hard pressed to find a more definitive guide that Bob Wolds Pocket Guide as a resource of most all treatments, last time I looked. Worth having a look if you have not done so before! Cheers and all the best. Craigo.

... thank you Jeebs and DD....trying to share what i've learned from fellow clusterheads and the CH giants... many right here! still remembering when i didn't know and how scary it was. so, anyway...