spiny

Mark, you or your PCP can order the test for D3, calcium, and PTH. You can begin the regimen and get tested in a week or two if that is the way the chips fall. Getting on it quickly is one objective. See the first picture that XXX, batch, put up of six vitamins? Buy those and take as he directs. That is the base of the Regimen. That should simplify it enough to begin by yourself I hope. Those vitamins are available most everywhere. The K2 can be a problem to locate, but is easily ordered from Amazon. If you cannot find the particular D3 Brand that is now recommended, use another brand of the same strength - 50,000 units. If you can only get 5 of the 6 today, get them and take them. The D3 can be found all over, but usually in smaller doses like 5,000 or 2,000. If that is the case for you, then take enough to bring it up to the 50,000 recommended. I take 10k everyday for 3/4 of the year and in winter - like starting this week, I up that to 15,000 per day. I have been on it for years now with great success!!!! Yes, it is pretty stinking amazing that vitamins can do what pharma cannot.

Hey there!! Happy to read that busting is working for you! Keep going. We all know this is not often a 'once and done' thing. Eight months without maintenance busting is pretty darn good! Don't get lost in the snow up there!!!

jon - 'Please work. please work!!! Wait, how can you work when I can't get you??????' Perfect!!!

Hey there!! Welcome too! Do you want a pretty much sure fire test? It will give you a Cluster - Nitroglycerin. Mr 'I'm the Doctor' needs to check his lack of knowledge. He can give you a tab of Nitro and be standing by with the O2 when you lose your $hit from the pain!! JERK. Wonder if he even knows that???? I too am female. I went to my current Neuro and he tried the same mess. "Must be migraines since women don't get Clusters.' Really? I took my husband the next visit in a week and he glared at the man and said " I want my wife back. She is in hell from 8pm every night till 6am every morning and I want my wife back!' That got his attention. And we get along very well now. I have had them since I was about 22. Almost 50 years, so yes, you can live with this mess. So, either get his attention or get a new doctor. You need O2. If you said it worked for you and then he denied you, what kind of 'healer' is that person? Not a very good one. We can get you set up with welding O2. Well, tell you how to do it. But, if your insurance will pay, they should have to pay, not you due to an idiot at the helm. When do you return to him? Hugs and hang in there!!

He will check in today. I spoke to him and he will provide what updates are available.

It is a great book!!

I feel increased pressure in my eye when an attack is on the way during the day. It feels like the eye itself is swollen. If you search the Trigeminal Nerve, you will see the whole area affected by your hit. It is the whole side of your face and head. All served by the same nerve, it just branches off all over the place. I would see the eye doctor about the swelling though. You can never be too careful where your eyes are concerned.

You can PM me directly from the board. Just click on my handle and it will open my profile and include a 'message' bar. I am doing well, thanks for asking!! Check your message box.

I have read where Tinnitus is a rather common problem post COVID. If you search, you will find a lot of hits for this issue. I found no research regarding COVID and Clusters. Tinnitus? Yes, there are a lot of references to COVID patients having it long term after recovery. It sucks!!!

I think there is still an annual 'bicycle ride' to honor the discovery. Pretty amazing story there.

You seem to be suffering from anxiety and depression, in addition to the CH. That is another can of worms of course. Let us know how that part is going post infusion please? They might be both caused by the anticipation of a cycle and vanish when the infusions are over and you feel safe. If they do not, then you might want to seek help from you PCP regarding both of them. Hugs!! Please keep us in the loop and get the vitamins for the D3!!!

It most certainly is 'okay'! I know that many here have suffered the same angst that you are going through now. We worry till it shows and really worry if it just teases us with shadows. You have your appointment set for December? Very good. Now, just mark the days off on the calendar. The threat of a cycle can be horrifying. On the other hand, if it fails to show as expected, we are a nervous wreck! I don't think that numbing works. Or perhaps not for me. I keep the meds simple to fight with. Are you doing the D3 Regimen? Have you done it? It can provide amazing help for CH. When in shadow, expectant mode, I prep everything I might need. Make sure that I have my ducks lined up properly to fight. Being nocturnal, I grab caffeine every evening, want it or not and down some. Be it coffee or a caffeine pill. Preventative medicine for me. It also kills shadows. Then, I try to carry on like normal. Sweating it out will not help me, so I don't. I prepare for the worst and wait, confident that I have done all that I know how to do to prevent the beast from kicking my head in when I fall asleep. No matter what, I know that I am in a better place to deal with it here, among friends! ATB!!!!

Get that checked out before doing any meds prescribed!!!! When she sees the Cardio doc, let him know about Clusters and what is prescribed for them. Some are contraindicated with any heart condition!!!! Hugs and all the best on Friday!! Please let us know how it goes Bomachel!! May this provide her with a PF life!!!

Excellent short video Tony!!!! I identified with it directly too. I love that it is short and therefore more people will actually watch it!!

All the best Onglamesh!! Sounds like your life is moving in a great direction for you now. It is wonderful that you checked in to let us know how you are getting along. Success is always AWESOME!! ATB!!!

Hhh, I know, we know, that you are not a wimp. This beast is straight from hell and deserves to be sent back!! I am delighted that you have people who know your tell and mention it to you! They are good friends to have around. The change in time might be from moving off of Daylight Savings perhaps. Everything seems off by an hour. It used to throw me for a loop. The bulb finally lit up and I realized that 8pm last week is 7pm this week. Are your D3 levels at say 85 or above? You need to be at that level to reap the benefit of the regimen. You can PM XXX for information on the current regimen. It has changed a bit since I began. Sometimes doing extra 'loading' doses can kick you into remission or reduction to a greater degree than where you are now. Are you using Melatonin or Benadryl? Both can also help. As for the welding system, buy a welding tank of O2. Become a hobbyist. That will be under $100.00. The Clustermask is about $30.00 and a regulator can be pretty cheap. Don't buy all at once if that is not possible, but start buying the pits and pieces. Make it your Christmas list or Holiday list? I had to piecemeal it too. But once I had all the pieces and it was running, I was in heaven! Yes, it took over a month to get it all bought, but I made it my priority and informed my husband. After Thanksgiving that year, I had my set-up. Life changed. Stay with us! We will try to work through this together, okay? Better days are coming, with all the new research going on finally, we may actually have something legal that REALLY works. Won't that be awesome?

Actor, not a real sufferer? That was funny FunTimes. Jon is correct on the trigeminal nerve. It serves that whole side of your face, head, etc. Some have more pain on the upper teeth and some with the bottom. I think that many of us massage or rub our necks with a hit. Either before or after for me. If my neck begins to hurt, likely I am going to get hit. I really hope that you can get O2 set up at home for your hits. It is amazing at killing a hit. Push for it!! ATB

I'm nocturnal, so I don't notice that, But the first one of the evening will begin about 8pm. My 'tell' is I begin rubbing my forehead above the brow on my CH side. Or I will be rubbing my neck, as that is a 'tell' for me too, if it starts to ache. Both indicate a hit is on the way. Knowing your own 'tell' is pretty handy. Have you looked into getting a welding set-up? Not script needed for that O2. If you are interested, we can help you set one up and get you some relief that way. It will cost about 150 to 200.00 to get that going. O2 should be your best friend! Have you had your labs done recently to see what you D3 levels are? How much are you taking daily? An increase in that vitamin can really help too. I tend to increase my D intake before a cycle is due to be sure it stays away. Like many in the world, I would suspect low D levels because most of us were not able to get as much sun over the summer this year. How much D are you taking daily? Your partner sounds like a keeper! We love our supporters.

It is hard on your body. It might cause bigger issues down the line. Many reasons to limit the drug. Triptans can do really bad things to your heart. So, too many, is too many. There are better ways to treat your head actually. Please type 'D3 ' into the search bar at the top of the page. A really great way to get relief without sacrificing your body. It is just vitamins and very safe. Good for you stuff. Triptans are not good for you. That is why they are limited. Read the 'New Users' Banner at the top of the page for other info. Welcome and we are here to help!! <3 Read, read, read and ask questions. We re here to help you navigate this disease.

Hhh, Being sick of it attacking you is normal and we all experience it. Are you doing the full D3 Regimen or just D3? It matters. O2 kills one hit. It does not prevent the next hit unfortunately. But, you need to stay on it for 5 or 10 minutes after the pain has gone. Otherwise, you will get hit again right quick. Try that and perhaps you will get an hour or more pain free. And if nocturnal, try sleeping in a recliner. Keep your head above you heart and you will do better. Wake sooner with a hit and perhaps have fewer hits. I truly understand your anger!! Carry on. Use your tools and get pain free! ATB!!

Do not apologize. WE all need to rant on occasion! I cannot take trex in any form. But, you will find a paper on the site that tells you how to split those injections. You can get 2 to 3 doses out of one auto-dose. Most only need 2-3mg, not the full 6mg in the injector. So, that can be a huge help when you do need them. Many 'stockpile theirs when out of cycle to have enough for the next cycle. Building your arsenal is a good thing! You appear to be past the point of needing your O2, but we have a paper and many who will help you to optimize it for best relief. Neuros seem to just hand it to you with no instructions on how to use it because they don't know. With proper technique, you will be able to kill most hits in 5 to 10 minutes and then do about 5 minutes of 'post hit' breathing to assure that hit stays g.o.n.e.! Owning the Cluster-mask will improve your aborts on O2 a lot too!!! And we do understand the terror it brings. Better than our doctors do for certain. We are always here for rants and all. When you get dealt a $hit hand, it is nice to have others in the same boat to talk to when wanted or needed. They are the ones who understand what you mean and why you are worried. ATB!!!

I have known acupuncturist's and chiropractor's who claim they can cure CH. I have not experienced success with either. Most CHer's would agree that they were not 'cured' by either if they tried it. So that would be no, it did not work. The same as having teeth removed did not, nor did having my sinuses reamed. Empty promises for me. This site is where I found relief. What meds is your doctor prescribing for you? Do you have O2? Have you spoken to your Neuro about how you are feeling currently? I don't like the feeling that you are hanging in the wind with no support.

Hi Mashburn and welcome. Sorry that you are suffering PTSD. Well, that is what it sounds like and we get it for obvious reasons. I hope that it becomes much less over time! You have been diagnosed, right? What are you taking for your head? Any O2 for your hits?????? Have you had a MRI with your diagnosis? I always feel that two weeks PF means it is over. I might still get a random hit due to weather, but the cycle has ended. After two weeks with no hits, I will sometimes try a beer - big trigger - and if that goes down with no CH, I call the cycle over. If I feel nervous regarding getting a hit, I have a cup of coffee. Good ole caffeine! ATB!

if you dig deep enough, you will find that the recommended dose of 400UI/day should be 4,000UI/day. They messed up and moved a decimal point in the way back and have yet to correct it. Say they are fixing it, but no change so far. That is rather crazy that they toss the doctors who are right!!! Have they factored in the use of sunscreen that blocks what light you do get? Australia did not and they have many young women who suffer from Osteoporosis now. That really sucks!!!

My doctor does them as she knows that I supplement and why I do it. So, no extra, just part of annual blood work. They can be ordered privately too, but I am not sure of the expense. It varies by area it seems. It stinks that you are penalized for supplementing when your head clearly benefits from it. Another reason to be happy that Batch is succeeding in getting a trial going. Too bad it will take time to implement across the globe!! ATB!!!!