spiny

What you are doing with the O2 - inhale, hold, and exhale with a crunch seems to work best for most of us. Not being able to get enough O2 per breath sucks. You need the cadence that works for you and plenty of O2 to maintain that rhythm that is most effective for you. It is often the case that a 25lpm regulator is needed. So, I am not surprised that the tank with the 25lpm works better for you. If you can outrun it, you need a higher flow rate. If you still have a shadow when you quit the O2, the hit will return for most if not all of us. And when you are PF, do your post breathing as well.I have walked away from my tank with a 'minor' shadow, only to have it ramp right back up and I do a bat turn back to the O2. It needs to be completely gone for me and then 5 minutes of post to remain PF for a some number of hours. And heading to a new locale can begin a cycle sometimes. So, I suggest that you keep the Benadryl in the mix. Maybe only at night when you are traveling, but once there, go back to taking the ones during the day if possible. The different pollen can be a big problem. ATB and Welcome to the site!!!

It very well may be the D3 that is working for you now. Batch often recommends returning to a loading dose if you are not getting relief. Awesome that it is working for you!! Occasionally I will forget my D3 vitamins. I am fine if I miss only one day. If I miss two in a row, it is pain City. So, I know that for me, the D3 is pretty much good magic!! Keep us posted Kat! It would be so lovely to read that you have been a day or three with no hits. Yes, the diagnosis of CH is rather devastating. When you search and find out what it is, you sort of want to throw up because the outlook has been so bleak! But times are changing and hopefully the new research will mean better treatment for all.

Many find that looking down toward your feet helps. If you are a 'rocker', this seems to come naturally. I tend to rock and stare at the floor with unfocused eyes. Just me perhaps. When you first begin, exhale with force - add a crunch at the end. This gets repeated for several breaths. Push out the CO2 and suck in the O2 deep. Hold a few seconds and repeat. Fast, shallow breathing is usually not the fastest or best way to abort. You want that CO2 gone ASAP. How fast you go just depends on you and how your head responds. I will start out fast and hard, then let up till I hit a sweet spot - one where I notice a significant reduction in pain. I will repeat that pattern for that hit. For me, it varies as to the time to find the 'spot' that is going to work with each hit. In short order, you will know what works for you. I use the tube as I cannot stand the mask on my face. If I see that the bag is filling too fast, I turn down the flow. I may go up or down a few times in a hit. Pain worsens, dial it back up and get to work. Pain lessens, begin to relax and go with the flow. I vary the flow from 25lpm to 5lpm. My post is at a rate that matches my relaxed breathing post hit. Often, if I am tired, it will be at 5LPM or lower. CHF will likely be along to direct you to a paper on how to use your O2. I haven't time atm to find it. But, the above will get you going. To conserve, adjust the flow on your regulator to match your breathing. That is all. To make you visit as short as possible, do the forceful exhale and deep inhale. If the bag is filling too fast, turn the dial down till you catch up. The focused technique is important to me. I usually get a good abort in about 5 minutes and then 5 minutes post. For a really bad one or one where I had to wait to hit the O2. that time can be doubled. If you can, grab some caffeine on your way and chug it. It often helps speed the abort. Not sure if you use can caffeine or not, but if you can, it helps. Which conserves your O2.

That was my cycle pattern before I started the D3 Regimen. The first year, I had lower level pain and slower ramp-up with incoming hits. I continued on the regimen all year and the following year is when I got the relief that I have now. It took a while for me to get full relief. I suspect it was because I was in high cycle when I began the vitamins. Also, I had one false start on it as I took the B vitamins. That I could not handle as the B12 made my tongue peel, which was a misery for about 10 days.

Kat, I was a mild chronic early in my CH career. My hits were daily, but with a low level of pain. Then I got a 10 year break. That ended when I sipped a beer and got hit almost 15 years ago. That was quite the surprise. The pain level went way up! This time around I have been Episodic with 6 to 8 months cycles beginning in September every year. I get four hits a night and they last exactly 2.25 hours with a 15 minute break between hits. Lack of sleep becomes a real issue as I only sleep two hours in twenty four. Have you had your D levels tested?

I would agree with Rod. Pred makes me hyper. Wide open for hours on end. And on occasion, I feel like my head and behind are no longer wired together!! Are you taking all your Verap at the same time, not in two doses? That is not the norm. Not the way it is meant to be taken either. Does your Doctor approve of taking both at once? Just wondering. In addition, the short acting is better for CHer's, not the Extended Release. Have you checked your blood pressure an hour after taking the verap? You really should. It will drop with the verap and that will make you dizzy. And if you are taking both at once, that could be the issue.

For the last year, I have just done the Benadryl. In the past, during cycle, I did both. Now, with the D3 and a bit of maintenance, I have not had a cycle in over two years. Not to say that I don't get the occasional break-through or random hits, I do. But they are milder and usually a one of, not the four brutal hits that I was accustomed to in cycle. Life is good.

Taking it twice a day means it is extended release. The regular one you take three times a day. Your script likely says 'ER' on it. Not sure why, but the old fast acting works better for us.

I wish I had answers for you Kat! It is hard with the presentation of your symptoms and such to say 'Oh yea, those are CH.' I just don't have a good answer to that one. The ramp-up at the same time of year does sound like it of course. CCH's have that occur. And some people begin with not so 'typical' CH, only to have it become more obviously CH over time. On the other hand, because there is one, you are on the Extended Release Verap. The short acting works better. As in you take it three times a day, not twice. Patients have a better response to the short acting version. Can you get your doctor to change that so that you can try it? And 320mg/day is a fairly low dose. So, you could get the short acting and go a bit higher to see if that does a better job. Just make sure that your BP is okay with a higher dose. You are taking the full D3 Regimen, right? The vitamins all work together. Have you added Benadryl? Sorry, I don't recall. Hugs!!!

Taking the B will not work against you from my understanding. You should be fine taking it. If I am recalling correctly, Batch recommended it at one point. Perhaps he still does. One small caveat: B12 can make your tongue peel. Only for some people, but that is why B12 is often given in shot form. Your tongue peeling is not pleasant. It will recover pretty quickly and causes no lasting damage that I am aware of at this time. So, if that does happen, you will know why.

Unfortunately, that is common. Have you tried the nasal spray? It will work faster than a pill and what you found this morning is why it is recommended that CHer's use the nasal spray or injection. A pill is often too little and too late getting into your system to work. The Trigeminal Nerve feeds your whole face on one side and 1/4 of your head - the front quadrant on your CH side. It has three main branches and many smaller ones. Did you try an Energy Drink or coffee or perhaps a V8 Energy? Caffeine helps a lot and many swear by the Taurine in the energy drinks. Slam it down at the first twinge. The waves of pain I think many can identify with. For me, it is like every wave is a bit higher, the tide coming in. As it ends, rather like the tide going out - the branches of the nerve don't light up all the way to the end of the branch. It feels like my brain is going back into my head at times. Have you read the links shared with you yet? They give a ton of info! Had an emergency in the house, so did not hit 'submit' yesterday. ATB

A great presentation Tony!

Well, I am amazed that he would say that. Sort of admitting that no one there knows anything about CH. Did you get a Neuro appointment out of it? Is the Pred a five day dose pack or a longer term taper?

Hi all. I just found out that our Amazon Smile account is once again working. If you click on the first post in Fund Raising Opportunities, the link put in by Bob is now working. Click and join if you would like to contribute every time you buy from Amazon. It goes to Clusterbusters. Org.

Well, that bites. Yes, it really does help.

Thanks for posting this Mit! It is great that you went back on the D3 and are getting relief.

A seven day taper pack, where you take 6 pills the first day, then 5, then 4......... brings me relief the first day. It lasts till I get down to 20mg per day If it is going return, that is when I know. On a longer taper, it might take two days before I get to a better place. Likely due to a slower build-up of the Pred. You took a full daily dose and got slammed? Ouch!

Lets redo the calendar to eliminate the Equinoxes!!! That is my 'start cycle' date. Sorry that you are getting hit again Jimmy!! May you return to PF status 'Toot Sweet' as Jeebs used to say! PFDAN to you too friend! Stay in touch.

Benadryl is a first line allergy treatment that has been around for decades. It alone crosses the blood/brain barrier. That is why it makes you sleepy. And why it helps with CH. Zyrtec will help with allergies. Not so much with clusters. So, how about take Zyrtec for your up/work time and then just take the benadryl at night? Many only take it when they go to bed and get good relief that way. So, your bedtime would be the ideal time to take it. I take Singulair for allergies in the morning and benadryl for my head at bedtime. Allergies can make your sinuses swell with yuck and cause pain in your teeth. So can a sinus infection. Many CHer's have had teeth pulled from the pain and wound up without one or two teeth and still have the pain. The Trigeminal Nerve feeds your entire face nerve wise. And the front quadrant of your head on that side too. The pain is from the nerve, not the teeth unfortunately. So, pulling teeth does not end the pain. Nor does sinus surgery that many of us have already gone through before arriving here. If you have an infection, antibiotics will help with reduce the pain of swollen sinuses due to an infection. They swell up, push on the nerve and now you hurt. As you most likely know, allergies gunk runs clear or perhaps milky white. Infection makes it turn yellow or green. So, you might want to keep an eye on that. Hugs!!!!

Monica, I have been a side sleeper since puberty. Dr J - You can get caffeine in capsules online. I have 200mg ones in storage for times when coffee is not an option. That may be an aid for you that way. So, if coffee is out, perhaps give that a try. I have dumped the powder on my tongue when in a bind and needed quickly.

dehabel - That cold stream running down your neck is not very pleasant! I've labelled peas that were returned to the fridge as "CH' so they don't get eaten by mistake.

If you like coffee, I suspect you will enjoy the cold brewed version. Easy and less bitterness to it. I use this daily now at about 7pm. I am not in cycle. but I will get a shadow some evenings. I have found that a cup of 'preventative' coffee helps ditch the shadow before bed every time for me. And hey, we have to live with this, so buying really nice coffee for that after dinner glass of iced coffee is being nice to yourself. You deserve it!

Yes, Ketamine is used for CH. We have members who have received this treatment from their physician. We would never encourage any member to take 2 bottles of cough syrup. There are many side effects, even at the recommended dosage, so why jump in for two bottles and risk a major problem because you are taking MAOI's or other necessary meds for other conditions? Robitussin in not without risk in the first place. And is not for those who take certain drugs on a daily basis. The 'proper' place for this post would be under Research &Scientific News. Members are always interested and read the posts there regarding what is happening to help our community. This would be a great place to put links you find interesting to the community. That would be an actual help. Would you like me to move this for you so that you are fulfilling your goal of providing help to those who suffer from CH? It would not be buried in a thread that would not be seen by many. Adding the Shroomery Sponsor page is not needed or appreciated. I am asking you to not include such links and to delete it from your post. Since you evidently do not suffer from CH, you really cannot contribute your own experience on Share Your Busting Stories or Theory & Implementation. Those threads are for people in pain. Read them? Of course. Be sympathetic? Yes. Offer suggestions for treatment? Not a great idea. We do appreciate that your stated purpose is to help people in pain. I am asking you to use that desire to post in a way that will help the community.

No. Just no. This is rather like saying 'Lets kill our liver with Tylenol today!' In many states Robitussin is kept behind the counter at any pharmacy, due to people taking it for the so called 'high'. We know that opioids do not help CH. The 'quote' from Clusterheadaches does not produce a return if clicked on and was from 2003. I am fairly sure that you could find many totally unsuitable ideas on many boards if you care to invest the time to hunt for such posts. If this was valid and valuable information, after 17 years, there would be current posts reflecting the success of doing this. This is bad advice. I highly doubt that members are looking for a new way to get high. What they are looking for is pain relief. Not a cheap high that might prove deadly. fillzeros - Did you take this for CH? Cut and paste quotes are fine, but not as a stand alone trying to prove the efficacy of a destructive treatment. Dredging up old posts is ok to support your point. However, your point seems to be to get high, not get pain free. It works for you? In looking back over your posts, I do not find one which states that you have CH and have used Robitussin to conquer CH. Just this one which does not state that it made you pain free, but that it made you high.

What delightful 'new' news!! My eldest has a severe sleep disorder. It would be amazing for her to be helped by this research. I look forward to reading more about this issue too.