spiny

Well, if it is not safe, a lot of us are in trouble! Not covered by Medicare and often not Medicaid either. Other companies will attempt to deny it on occasion too. It is the expense. I believe that O2 toxicity was observed in ICU patients who were on O2 24/7. Big difference. So, you are not using it 24/7 and you do not have COPD that limits you. Let them know that primarily it is an issue of expense so far as insurance is concerned. The doctor will tell you it is safe, just hard to get approved! If it weren't safe, why would it be the primary abortive we use? Which is approved by regulatory agencies for this use. Which is the primary abortive according to the medical community. Sometimes, some people need 20 to 30 minutes until they get 'their' method down pat. Then it is down to 5-10 minutes.Our fighter pilots use it when they fly and that is over 15 minutes continuous use. And here is some food for thought. Premature infants who spent a lot of time in an incubator with super pure O2 went blind. Well, back in the 80's I think it was, they had a shortage of the super pure form for these babies. They had to use the 'regular' O2 used by the rest of the hospital. And the result? Those babies did not lose their sight. So, lesson learned there and eye sight of future infants was saved. You are not 'spamming' the board!

That is the 64K question. We are the same, but different too. For me, I wake up one morning and realize I had only three hits during the night, not the standard four. Then, one morning, I wake and realize I did not get hit at all. I do have some issues with continuing to wake at my standard 'hit' times for a week or more. But, they are painless awakenings. What dose of Verap are you taking now? Two or three times a day? Chers can go pretty high on that stuff. Your BP may be a limiting factor. Yes, that last day or two of Pred often finds the beast rising again. It sucks! Hopefully your Verap kicks in soon.

Research is destroying the 'No medical benefit' thankfully. The same as it has done for MJ. AARP came out with an issue covering the many retired people who use it for pain relief so they can work at home or on a paying job. It is amazing to me to see this finally come full circle! Just keep politics out of it!

While sorry that you have CH, we are very glad that you found us. Read and ask as many questions as you can or care to. By reading the Forum, I think you have some good background info for your Neuro visit. Like Verap is the most often given daily med for CH. It lowers blood pressure. And you want the short acting, NOT extended release formula. It just works better. And you will want to keep an eye on your BP if you increase the dose. EKG's are often done with an increase in dose. Need to keep an eye on cardiac function. Often you will be given a Prednisone Taper Pack to bring relief while the Verapamil gets into your system. While a miracle drug in terms of pain relief for most, it cannot be taken long term due to joint damage. A short burst here and there is about all that your can body handle without risking damaged hips. Most other drugs are considered second tier. Not the best to use and often 'added on' by some neuros. If you are offered Imitrex, you want the injections. Some get by with nasal spray, but it does not work as fast as the injection. Pills are about worthless due to the time it takes for them to work. Take the O2 information with you too! Not all are up to date on how to use it and when to use it. They normally do not tell you how to use it, but for that you have us. CHF is the O2 pro when it comes to covering the subject! And read up on the D3 Regimen. It is awesome for many sufferers. Lowers pain and slows ramp up to allow a better abort if you hit your O2. It is all good for you vitamins. A blood test for a baseline of your D levels and such is stressed when you first begin the regimen. Some start the vitamins and get tested a bit later due to doctors and such. We tend to have low D levels when in cycle or even year round for some. This regimen has really helped a lot of CHers. Some go completely pain free with that alone! ATB!! Your reply to CHF just popped! Sounds like you have your ducks lining up nicely!!!

Numerous CHers have had teeth pulled due to pain they thought was coming from a tooth. Unfortunately, having the tooth pulled did not cure their CH. Can't cure it. I would advise having a check with your dentist regarding the wisdom tooth. It can cause decay in your 12 year molar and you don't want to lose that!

Thanks Pebbles. Yes, the more these medications are shown to work on other stuff, the better for us as a group!

Hey Elrik! Yes, they can last. Unfortunate but true. On the other hand, I had a ten year remission once, so don't despair! Others have experienced the same. Some have experienced them since childhood. Which is horrible! You never actually know. But, they can be managed to a great degree. Please read and ask questions. Hopefully we can help. If nothing else, we do understand what you are going through. And this board has many years of experienced Cluster Heads to talk to and get info from to fight the beast. ATB

I think that if you put 'Boost oxygen' in the search bar, you will find some info from a year or two ago. I had planned to buy some just to see if it would help, but didn't get over to Boone to get them. They might be worth having for a road trip as insurance. But, see if you can find more info in the old threads.

There have been suggestions through the years that hormones get involved. And some women are Pain free throughout the pregnancy if they get pregnant. Some guys have found that low T is contributor. Have you looked into the D3 Regimen? Safe and effective for reducing pain of a cycle. Also many have gotten pain free on that alone.

We need a Happy Dance meme here! Great news there!

Siegfried, you do what you have to do. If you can't take Verap, then you can't. I would definitely work on the D3 aspect before I took any Lithium. It is safe and Lithium is a mess in the making for many. I turned it down flat when it was suggested years ago.

Way to go Kat!!! Now, read up on how to use it for your head. It is work, but well worth it!

Welcome GodsBlessedGirl! Sorry that you need to be here, but very glad that you found us. Take a moment to read the banner above For New Members if can. It provides a lot of info. ATB

It would be a good idea to start your own thread Art'. In the interim, I wonder why you have not begun the D3 Regimen? It sounds like a good idea to get that building up in your system. And that is a lot of Pred over 8 weeks. It is most often used to provide relief while the Verap kicks in, not as a stand alone med. You don't say, but what form of triptans did you take? Spray, pills, or shots?

It is usually best not to tell a welding supplier that you are going to breathe it. Many say it is for a cutting torch. Or that a relative needs it for welding. Just about anything will fly as long as you don't say it is for you to breathe.

That is great Willy! Success is awesome when kicking CH to the curb. Nothing like getting your life back.

Yes, I did see some of the guys in particular having beer in the evenings. Out of cycle I suspect. Personally, I stuck to vodka. No wine or beer. I did have a couple of Tequila shots though!

The scan does not need to be done when you are in cycle. It is looking for other brain abnormalities. One and done unless something else happens. Yes. I have. Several times in the 'old days'. My hits were milder and shorter then. And then once with a 6 month cycle where I thought I was going to die. I didn't die, the cycle ended, and I found a Neuro. He helped as much as he was able to with the limited knowledge he acquired in school and practice. Then I found this site and became a person again.

Yes. Trex comes in pills, nasal spray, and shots. You administer the shots yourself. Any headache doctor would know that. Not every Neuro unfortunately. Pills are normally for Migraines, not Clusters. I would need to do some research on some of the other meds. They are not common as a first line of treatment. O2 needs to be first. If you have to buy and set up a welding tank yourself. Verapamil is the first line pill. Short acting is the best for Cher's , not the extended relief. If the script says 'twice a day', that is extended relief. Prednisone is given as a short course of treatment till the Verap builds up in your system. I would look into the D3 Regimen. It is just a few vitamins to take daily. Many have gone pain free on that alone. Most of the rest using it have had a reduction in Kip Level Pain and a slower ramp up. That gives you more time to get your caffeine and get to the O2 before you want to beat your head against a wall. You need to see a Neurologist, hopefully one who specializes in headaches. The Neuro needs to order a MRI of your brain to rule out other problems if there are any. Have you read the Blue 'New Users - Read Here First' at the top of this page?

Ouch! Two weeks is my method. Two weeks of PF and I will try a beer.

Hi 81007 and LKD06. And welcome to you both. I am at a loss why pills are being prescribed for clusters? They take too long to work for most people. If you get the injections you get much faster relief and you can take less than the standard auto-injector dose by monkeying with the stupid pen. Vials are much better. I don't think you are making a mistake in avoiding the meds if you can LKD06. There are other options that can help you. The D3 Regimen, energy drinks, etc. Sorry, I am not up to speed on your history. This community is working to solve the issue of no O2 for Medicaid or Medicare. There is a meeting in DC to bug the government to fix this horrible injustice. We call it Headache on the Hill. ATB

Hi 81007! If your hits are regular in their timing, you might be able to take that pill early. Always get hit at 8pm? Take one at 7pm perhaps. It might help you get relief sooner via the pill. Just thought.

I have learned that you need to talk to the anesthesiologist prior to surgery. Let them know that you have CH and would appreciate no epinephrine in your meds from them as this can set your head off! They can do this. Also, explain that you need access to O2 at 15lpm minimum - 25lpm is better, with a non-rebreather mask waiting for you when you wake up! I have done this for 3 surgeries last year and every time, it worked! Yes, they should also know about the verap. But, apparently, if you let them now the score, they will help you. I had 'sedation' for two scopes last year. Well, I got hit from that little cocktail. I was out, but thrashing all over. So, they went to general to finish the procedure. They told my husband it would be 30 minutes or more before I got out of recovery as they went to general to finish. Imagine their surprise when they had to go right back out and tell him I was up and huffing O2 when they returned to recovery in just minutes! I left in less than 10 minutes and with no pain. Best of luck with your surgery!!

Hey Kat! I respond very well to O2. I have not heard of this disparity before. Perhaps it is a reflection of the doctors not knowing how to instruct the patient in how to use O2 for the best relief. I have found this to be a common problem. If you don't do it right and do the post breathing, it does not work very well. So, I would suggest it is related to lack of physician knowledge as opposed to the sex of the patient. Reminds me of the ratio of men to women with Ch. As more women are being accurately diagnosed that ratio has changed and women are about as likely to have Ch as a man is. It used to be thought of as primarily a disease of men while women get migraines.

Opiates do not help. Much to the surprise of many doctors!!! I had an upper and lower scope last year. To be done with sedation, as is the norm. I got hit while under the sedation and was writhing around on the table so much they had to give me general to finish the scope. They had been warned prior that I might get a hit from the anesthesia. And asked to have 15lpm of O2 available when I woke up. They told my husband it would be at least 30 minutes before I woke up as they had to do a general. Well, I was up huffing O2 in five minutes with a moderate hit. They were great and handed me the O2 without question as soon as I sat up. It paid off to tell them of my CH and how to handle it! The neck pain is very common with CH unfortunately. Some get it prior to a hit and some after. Over a cycle, it seems to get more painful to me. Many refer to it as a 'cluster knot'. It does feel like a hard knot at the base of my skull. And it will not be massaged out. It is good that you have a way to mitigate it to some degree! When my neck hurts I can be sure a CH will follow soon. There have been a few cycles where the knot stayed the entire time. A thread on how Ch starts for members might be a good idea. Many have posted and asked others over the years. Usually there is at least one other member who can relate to any members first battles with the beast. I find that that one person who identifies with what the new member is saying always seems to show up and add their bit to the conversation. It helps a lot to read that someone gets what you are saying!