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@Craigo Thank you for your reply. I will def order some drops. Here is my info you requested. Again thank all of you for the help. Baseline before loading was 32 normally for me Loading was the 50000 daily for one week and 40000 daily for one week Body weight is about 230 Calcium 9.0 PTH, intact 47 pg,ml I have currently imcreased my vitamin D to 25000 units per day

Greetings to all thanks @Dallas Denny and hey @jimmyogden, great to hear the headaches are better- that is the main signal and a drop in attack frequency even without full remission is a signal the regimen is doing its job. Hopefully with a few tweaks you could get more improvement. First, @snafu is spot on about the fatty meal. D3 is fat soluble, so a capsule taken midday on an empty stomach can leave a chunk of it unabsorbed. Moving it to right after a meal with some healthy fat is a single easy change and on its own it may lift your numbers. On the 56 to 52 reading, I would not read too much into the drop. Most D assays carry a 10 to 15 percent margin of error, so 56 and 52 are effectively the same result. You are sitting stable in the low 50s on 25,000iu a day, and that is useful to know. The question is less why is it not increasing and more how do you push it up. Before I suggest anything I know Batch would ask for a few numbers: What was your baseline 25(OH)D before you loaded? What was your total loading dose (the standard 600,000 over 12 days, or something else)? Roughly your body weight or BMI? D distributes through body fat. If you can get them, your PTH and calcium (albumin corrected) from a recent panel. That's some private info so feel free to tell me to piss off or rather DM or whatever you are comfortable with. With baseline and total load you can work out roughly how many ng/ml you gained per 100,000iu and from there how much more you need to reach 80 to 100ng/ml. Options to consider, in the rough order I would try them: Switch to a nano-emulsion or micro D3 drop. These bypass a lot of the GI absorption bottleneck, so you get more into your blood per unit. If absorption is your limiter, this moves you without raising the dose much. Where are you located, perhaps can find a link to suitable product. A partial top up load. As a rough rule of thumb, 100,000iu units shifts serum about 10ng/ml. To go from low 50s to the 80 to 100ng/ml band you are likely looking at something around 300,000, taken over a few days the way you did the original load. For context, that is not an extreme number. Renu Mahtani used 600,000iu loads across her psoriasis case series of around 90 patients, with some staying on 30,000iu a day or more until clinical remission and adjusting from there. And here in NZ, Starship runs stoss therapy at a single 600,000iu dose for deficient kids aged 5 to 18. So an extra 300,000 spread over a few days sits well inside what is done clinically. That said, you would want to see your PTH and calcium and hopefully are able to discuss with your doctor A short course of calcifediol instead of cholecalciferol, then back to D3. Calcifediol is already a step down the activation pathway, so it raises 25(OH)D faster and more reliably, handy if absorption is the issue. A short run could lift you into range, then you revert to normal D3 for maintenance. Hope that is of some help there mate, again - feel free to DM. Cheers, Craig.

@jimmyogden I've sent a message to @Craigo who is the protégé of Batch, the clusterhead who came up with the D3 regimen.....however, he's in New Zealand so may be tomorrow before he sees my message but I'm sure he'll have some answers for you. Dallas Denny

I appreciate the reaponse. Yes i am taking all of the co-factors. I am taking capsule had trouble getting the drops. But i usually take them midday and not always with food so I will adjust it to be with food

are you taking all the co-factors? they are essential for better vitamin d3 absorption. are you taking capsules or drops? if you are taking capsules you should always do so after eating some kind of meal which contains healthy fats. again this is crucial for absorption. this also goes for drops, which are basically some kind of oil to transport the vitamin d3, but not to the same extent. but it is always beneficial to not take these supplements on an empty stomach. for a fat soluble supplement this is important. it seems strange that at that dose your levels are dropping. maybe take another test to see if this is really your current serum level.

@Craigo can you help?

Followed the regimen to the letter even the same brand. After load dose d serum was 56 ng/ml. Continued taking 25000 units daily for next 5 weeks. Headaches are not gone but drastically better. Took d serum test yesterday and it is 52 ng/ml. Looking for suggestions on getting vitamin d serum into the 80 -100 range

Try to look at other medical supply stores. I know that there are certain medical oxygen supply companies that require you to get the machine and tanks. There are medical supply stores that sell the tanks by themselves. I just went and asked different medical supply stores until I got one where they just sold the tanks. There were a few that didnt even sold oxygen. So again, look around until you find what you need.

Napa in my town exchanges tanks.

Thanks anyways. I was just wondering if anything like this had come up. Just like the clusters nothing is ever found in existing tests. Related or not I can't be sure. Even cluster headaches still isn't even well known by doctors.

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.

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.

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.