spiny

One does not affect the other so far as I know. Many stay on the D3 year round.

Not to rebut CHF's excellent post, but I would suggest one 60 and one 90. The 60 is not required to be capped when traveling, so you can have your mask attached to it on the road. It is not an issue for me to lift and load. BTW - I am old with a torn rotator cuff, so that says something. A 90 will last longer of course and I have found the 60 very hard to come by. So, I use one of each and try to keep at least one completely full at all times. Yes, I can haul the 90 too, but it is heavy. Of course the shortage of 60's may be just the people I have to deal with! It really is easy to set up. Just know not to use grease, oil or any lubricant or teflon tape on the threads of the tank when you screw on your mask. You never use those around O2. All that you really need is a big adjustable crescent wrench to attach the mask to the tank. Tighten the nut on the regulator as tight as you can. Turn the regulator off with the dial. Open the valve on the tank and listen - no sound means no leakage. With the regulator off, any hiss of escaping gas would be coming from the nut you just screwed on. I bought them for 'my welding set up' and needed two due to high cutting torch usage. Never had a question asked, just made the statement and paid for the tanks. Owning them, I can have them filled anywhere, not just at the company I rent them from. It is a plus if you travel. And I can go on a 'welding binge' and buy as often as I want with a smile. Hopefully this helps a bit!

Funny. Yale and the VA are working together currently doing trials with MM. It is common knowledge in Neurology. The VA wants it to treat PTSD. Last I read, they were still taking volunteers. And as everyone has said, O2 is a first line of treatment, not a 'Well, if this fails we will get O2 for you.' That is bunk. "Here, have some pharma that can destroy your body rather than O2 which won't.' Nope, that boat won't float. Keep pushing and get onto the D3!!!!

I have found Error 403 appears when smileys are added sometimes. Removed the smileys and the post went thru.

Jon, you are too much. AMEN for O2!

Hey DM! Yes, the Equinoxs are common start times for cycles. I think the Solstices come next. As for stats, you can just Google Clusters and see what pops. I am not aware of any. Personally, I have had all but one cycle start in September and run till March - Spring to Fall Equinox. Then this year, I had a cycle start in late June. So, there ya go! This after decadees too. Very possibly you will only have one cycle per year. So, just be prepared. ATB!

Hey Javan! Go to the Clusterbuster Files section of the board and read, read, read. You will get the needed info for the D3 Regimen and much needed info on how to take MM. D3 vitamins are cheap and easy to acquire. The reduction in pain is pretty darn dramatic and some have gone Pain Free just using the D3 Vitamins. Caffeine is often used at the very beginning of a hit. Often on the way to huff some O2. O2 will be your best friend if used properly. Many people use Energy Shots for their hits. Smaller and all that. Caffeine is recommended. Coffee can work too. Very cold seems to be best for most. Down at the very beginning of a hit. Pred works too, but you can't take it all the time. Very bad for your hips and other stuff. But it will provide a nice break for a few days on occasion. As you taper down and reach say 10 or 20mg/day, they will return. It is often used as a bridging med to get you thru until something like Verapamil kicks in. Read and ask questions. There are a lot of people here who will help you learn the process.

One suggestion - wet the coffee filter first so it does not soak up your meds!!!

Here's hoping you are both in better health very soon Denny. We will miss you!

There should be a page in the Clusterbuster Files section on the board for O2 use. What I do is a few fast exhales till your squeek - like a breathing test which you likely have never had! Just force out all the air in your lungs. At the end, you will be making a funny sound. Now inhale deeply, hold maybe 3-5 seconds and exhale with force again. Now use your O2 to inhale deeply. Hold, exhale with force. When in pain we tend to hyperventilate so that part will likely come naturally. Just breath faster than normal and much deeper than normal! You are trying to get rid of all the CO2 in your lungs and replace it with O2. Picture that and you have it. Now, a very important part!! When your pain is gone, dial your flow back to match your normal breathing. Then sit and breath O2 at a normal pace for about 5 minutes. Without this 'post hit' breathing, that hit will come right back. With it, you will get your pain free time. Remember, a hit that comes an hour later is not a sign that the O2 is not working. It is a sign that another hit was coming! If I am low on O2, I cut the flow to almost nothing when holding and exhaling to conserve my O2. Turn it back up to inhale. ATB ADD: You can breath in thru your mouth and out thru your nose. With the Cluster mask, you will find that it comes with a breathing tube which allows that perfectly. And then nothing touches your face.

Hey Mel! There is a connection about a foot from the nose cannula. You can pull it apart to disconnect. This is how you change out to a new cannula. Now you have one hose to suck on. Exhale hard, then inhale deeply thru the hose in your mouth and cut the flow back while you hold a second and then exhale. Turn you flow back up and repeat. The 'redneck' bag is really easy to make so I would give that a try as well. Unscented garbage bag, tape, and the top of a one or two liter bottle are all that you need. And when I ordered my mask from CH.com it was here in two days. That guy is awesome! Congratulations on your success!!

I agree that the nuero was not helpful. Relpax/Eletriptan is a triptan - the same as Imitrex. You were given that in pill form I suspect as it is specifically for migraines. It is not for CH according Pfizer and pills are too slow acting for a cluster. Triptans for clusters are normally in shot form. With the old style diagnosis of cluster/migraine, he is treating you for migraines. Pretty sucky. It is very standard for a neuro to start you with a Prednisone Taper Pack, prescribe Verapamil and often prescribe Imitrex or another triptan in nasal spray or shot form. The spray works fast enough for some. The Pred provides quick relief ( a day) while the Verap builds up in your system. Your dosage of verapamil may wind up being quite high. That is not unusual for a CHer. Amitriptyline is Elavil - also mainly for migraines. Never worked for me either. It is an anti-depressant. Yea for O2!! Is it in tank form with a non-rebreather mask? concentrators do not work. There is info in the Clusterbuster Files on how to use it for the best relief. Most doctors do not tell you how to use it! Hopefully the new guy will do better. Please ask for an MRI of your head to exclude any other problems that may be there. A scan is very important to eliminate that other bad stuff. As for the D3, please read the D3 Regimen in the CLusterbuster Files section of the board. It includes a few other vitamins needed for the full regimen. You can also contact Batch directly. He is very helpful and give you the best D3 loading advice. It is best to get a blood test for your D3 levels when you start if possible. Not mandatory, but will give you a better idea of how much loading to start with. ATB

Yep. The standard Fish Oil at the grocery or pharmacy. I suggest the 'burpless' variety. Fish burps suck! Botox is very helpful for some, some migraine suffers. From my reading, it is not so effective for CH and the doctor administering it needs to know how to do that for Clusters, not just Migraines. Insurance can suck when you are trying to get O2. You likely will need the help of your doc. It can be a fight, but you can win that fight. I strongly suggest you start the D3 Regimen. It is easy, over the counter, and a huge help for many. What preventative were you given by the neuro? None? Did he just prescribe Trex and not a Pred Taper or Verapamil? Yes, Trex works. It is also bad for you over the long haul. And if you are getting hit 3-5 times a day, which two do you treat with the Trex? Using that med alone leaves you in a bad position. Remember - two shots in 24 hours max. There is a way to split the injections that can help. You are getting injections and not nasal spray or pills, right?

Hi there Flwaters! Welcome. Many have pain in the maxillary area when they are getting hit. It is not usually the main location of their pain though. That is one branch of the Trigeminal Nerve which tends to go bonkers with CH. Have you been put on any meds like Verapamil? That is the usual go to med for CH. Have you been offered O2? That is the main abortive for CH. You need it!!!! I hope the neurosurgeon helps. Is there a reason you are changing doctors? Or a reason for seeing a surgeon? I am a bit lost.

While it is beyond understanding the pain of CH if you don't experience them, it is possible to show her how some others cope. You Tube is full of videos of people having an attack. Perhaps show her a few of those. Or the Nat Geo section of Drugs Inc that covers Clusters. I know that is what made my husband understand a whole lot better than any words I had ever said. I recently gave the hospital I use a really great demo on what works and what does not. I was having a scope with sedation, the normal procedure. I got hit while under. I was out, but my body was thrashing violently on the table. They had to administer full anesthetic to get the procedure done, They informed my husband that I would be at least an hour waking as they had to put me fully under. In 5 minutes he was notified that I was up. Yes, I woke with a hit They had been informed and had my gear ready when I sat up. "Here's your mask and your flow is set at 15lpm.' They were amazing and amazed too. They had never seen such a thing. And it was duly noted on my paperwork for future reference. If you have something she could help with - wet washcloth, ice pack, caffeine - ask for her help. For me, listening or talking are out of the question. Any focus on words ramps the heck out of them. That was the hardest thing for us - the leave me alone part. He felt bad he could not help and that was hard all around. Now my O2 is in another room and I have the quiet I need to return to 'earth normal' before coping with people. That too may be hard for her. But I think it is pretty darn common. Not trying to hide, just can't handle the additional pain caused by human interaction. And those on the outside can't grasp why you are doing X to cope. Moxie is right about getting her to possibly join the site. She would learn a lot and understand what you are going thru much better than she does now.

Morning Meghan! Being female used to get you a migraine diagnosis, just because you were female. They are now finding that since they are diagnosing correctly that perhaps up to 50% of sufferers are women. The sore neck, like the lump on the back of your noggin are both sort of classic problems for CHers. Some use heat or massage on it for some relief. I have found that sleeping on the edge part of my pillow helps. Massage never did touch the hard knot for me, but it might for you. At the least, is is relaxing and that is a definite plus. Chiro does not have a good reputation treating CH. Make sure that you get pure O2, not a concentrator. And a non-rebreather mask for aborting with O2. There is a great page on O2 in the Clusterbuster Files section of the forums. It is very important to use it correctly for good relief. I suggest you read up on the D3 Regimen. It is awesome and has helped some go completely pain free. Others benefit from lower level hits and slower ramp-up of pain. All in all, it is good for your health even if you don't attain PF status on it alone. Your Energy drink should be taken at the first sign of a hit. Then move on to push ups or O2 when you get it. It works best if taken immediately. It is most common for patients to take a taper pack of Pred. while the Verap builds up in their system. Some require very high doses of Verap too. Up to about 960mg/day. Others get great relief at about 300mg or a bit higher. Depends on the patient. Word of warning on the Trex. It is known for increasing the number of hits per 24 hours period and also for extending cycles. Then there is the decision of which two of the day to treat! You were fortunate to be diagnosed early. I went over 30 years fighting for the right diagnosis. 'That's a disease of men. Women get migraines.' Nope. Very wrong.

Hi Stephanie! Yes, it has. If you search for 'Ketamine' in the 'search bar' you should get a bunch of threads come up that refer to Ketamine in them. Does he have O2 with a non-rebreather mask to abort his hits? Concentrators do 't work, but pure O2 is a blessing. ATB

Thanks fourdog. I need a great new book to read! $17.00 for the hardcover on Amazon.

Hey Batch, what does the turmeric do for you? I do not remember.

CHF -See the 'edit' option in a post - Quote Edit Options right next to the + box? Click edit and then add apparently. With this not yet posted, I see a paperclip and Drag files........ Once posted, I get the other options.

This is like being offered candy by a six foot tall Easter Bunny and believing it is candy! No, we do not accept candy from strangers. Your heart might be in the right place, but who really knows. Rather than delete your post outright, I am leaving it here for others to see and read - no buying or selling here - PERIOD! I re-iterate: DO NOT MAKE THIS TYPE OF POST!!!! EVER!

You are certainly welcome to write here. Hopefully it will work as therapy for you to be heard by those who understand. Being mis-diagnosed is an agony many have endured. Fortunately that aspect is getting better lately. It is heartbreaking to read what you have been through. I can understand your mental issues based on zero understanding and support. What did your doctor put you on for your CH? Are you getting relief at least? Are you across the pond in England?

You are right CHF. I used our welding set up in the basement for months. Wet washcloth covering the tip. Just for cleanliness and a little added moisture. Nocturnal hits are tougher to get going on right away big j. Mainly because you are not awake at the beginning to hit it. I would move it to the house - outside on the deck perhaps? Speed is of the essence. I would grab some caffeine first thing and then a robe and shoes and just book it as fast as possible. Just a suggestion.

May your Pain Free state continue forever Jenni!!! Small question, are you taking steroids for your MS?

I think that you will be pleasantly surprised at how much the D3 Regimen helps! Nice to read that you are getting set up there. Results are often seen within weeks. In the US, many doctors still think that 30mg/ml is acceptable. Well, it is not and they are in the process of changing that finally. You need your numbers to be at least 85ng/ml. So, there is that. Personally, the D3 has lowered the intensity of my hits and dramatically slowed the ramp up time. Some have gotten complete relief from it - nothing added!!!!