spiny

Batch posted a cool link on the 'At what point are you wasting O2' I think it is called. And info on sharing with your doctor.

Thanks Batch! I will share that. For those who have not tried hyperventilating on the way to your O2, it really does cut down on your O2 time. And if you are caught out in public, this method can buy you some time to get to a safe place.

Welcome getrdone! I am not a diver, but we have one or two on the board. From my reading, many avoid diving when in cycle. Going down (increase in barometric pressure) is fine, but returning to the surface may not be so fine. I am sure that I have read where some continue to dive.

Welcome to the board marj! For most, 40lpm is sufficient with leftovers! Generally, most people use up to 25lpm. But, if I were getting a demand valve, I would probably go with higher flow unless it costs more. Sort of 'just because'.' And because I know someone who regularly uses 45lpm. It is very good to read that you have O2 and are getting the great relief it provides. With CH, you often are your best advocate.

Yes, it is petty!!! Glad that you had a PF night though.

Hi Batch! I have been on the regimen for over 4 years now! It has reduced the intensity of my hits and slowed the ramp up time significantly. Thank you! I found that Multi B Complex was an issue for me. B50 might be fine. But B12 made my tongue peel!!! Yuck. So, I chickened out on the B. The coQ10 is new to me and I will add it. K-2 is hard to find in these parts, so I am going to order it now. Walmart pharmacist said they did not carry it and it was by prescription only! Yes, they have carried it. He was just not very bright. My initial D reading was in the 30's after spending the summer gardening. This test was done in August and I averaged over an hour a day in the sun sans sunblock. After three years of testing, I settled on 10,000 D in the winter thru spring, starting in September and ending in July. Then I run with 5,000/day. This keeps my D at 100 to 103. My cycles run from Sept. to April or May. Doctor tried to get me to stop supplementing with D a few years ago. Nope. Not happening. Of course the Gov. is now finding that their 'recommendation' of 400 units of D/day is way off anyway. Rather like the 'low fat' diet for cholesterol, no? I spent 3 years trying to get my neuro to read the protocol. Well, year three, a report had showed up in one of his Neurology magazines regarding D and he asked me to forward it to him. I don't think he ever read it or did anything with it. But, he now has a PA who is very interested in learning about CH. I will take a copy to her my next visit. I have severe allergies and Benadryl (sp) is an old friend. At this point, I definitely need to add it back at night. Most hits are nocturnal. Well, until this time. I am sure that the current problems stem from extreme stress from last February to this January. This winter, it is all being stubborn. And the barometric pressure has been more crazy than normal too. Again, thank you for all your efforts and the wonderful results many of us have gotten.

J, I look at people on TV with obvious Horners and wonder how many have CH!!!

I wonder if a trip to the eye specialist is in order? This has come on pretty fast if I am reading your post correctly. Or, you could tip your head to the side a bit to read.

I have used everything from a cutting torch with a wet wash cloth over the tip to the Clustermask. Had a Redneck set up for a while too. As Batch said, the faster and harder I go the faster the abort comes. Even with hyperventilating, I hold the O2 for a second or two and exhale with force. Like taking a tidal flow test at the doctors. I exhale till it squeaks. Then a big fast inhale. After a good drop in pain, I move to deep breathing at about 10/15lpm from 25lpm. Just slow everything down and hold a little longer. Then when I am sure the hit is over, move onto post breathing. Recently, I was so exhausted from multiple hits, I had a hard time maintaining rhythm. I would go hard and fast, but slow down too much too soon. The result was another hit while doing post breathing!!! Pretty well sucked and I would have said O2 did not work for me at that point!!! Technique is everything!

I have not had that Mit. My CH eye lid drooped badly for about a year. As in made it difficult to read it drooped so badly. I worked for months to get it back in place. It did not revert when the cycle ended and the doctor would not operate to fix it. So, I started reading with a book in my lap and gradually worked it up to normal reading height. Now that eyebrow is higher than the other and I have forehead wrinkles on that side, but my eye opens all the way. It barely droops in cycle now, but the pupil will not dilate even halfway after a month in cycle. Messes with my night vision. Is the eye itself lower or is the bottom lid drooping a bit and making it appear lower? The iris on my CH side did change colors. Not common at all. I went for an all day assessment at Duke Hospital and they only found two other cases. So, not something for others to worry about.

Hi cb! Verapamil: The extended release should say 'ER' on the bottle or script. You could ask your doctors office to check for you. The Short Acting Verap worked much better for me. My low blood pressure meant low dose for me - 240mg/day. I got my neuro to switch to that over ER and did a lot better. One in the am, one before bed, and the last when I was up with the beast at night. Almost all of my hits are at night. Since you are taking your verap. once a day, I strongly suspect it is ER. Caffeine: Energy drinks and shots make me sick. So, I often used V8 Energy with caffeine in it. Then I bought some caffeine power instead. At first I tried measuring it out. Very tedious. Now I just dip a damp finger in a small bottle of powder and chase it with cold juice while heading for the O2. So yes, straight caffeine works for me. It also helps with shadows. O2: Yes, I have had it fail. Two nights ago actually. It would kill the hit and about 5 minutes in to post breathing, I would get another hit! This happened four times. Had to get a new bottle yesterday after that fiasco. Last night it worked fine. We have a list of recommended doctors at the top of this section I believe. Go to the Clusterbuster Files section. You will find a lot of info there. After the first 20 treads or so are at least two tutorials on growing.

Hi Trackle. I too have low BP and am limited on how much Verap. I can take. First, the short acting not extended release is better for us. Don't know why. With my 240mg, I would take one in the morning, one at bedtime, and the last when I got up during the night. It worked best that way for me. Almost all of my hits are at night. Also, with just the one in the am I did not drag through the day. Taking two during the day stole my energy!! My resting BP was 80/60 at night, so adding more was not even considered on my end. I definitely recommend the D3 Regimen!!! At the least, it slows the ramp up and lowers the intensity. For some, it can stop the CH entirely all by its lonesome.

CHF has given you some great advice. There is a lot of knowledge in the Clusterbuster Files. I hope you read several of them! Playing Well Together is also a good one you must read. There are some meds that will block your busting attempts and must be avoided for several days before dosing. I would recommend 1.0gm for starters if you are new to MM. Then work up a bit depending on your personal response. It is advisable to have a 'sitter' with you if possible, especially if it is something you are not accustomed to taking. Your will find help with preparation in the files too. Set and setting are important. Being in a good frame of mind in a comfortable setting are important. The D3 Regimen can lower the intensity and slow the ramp-up of your hits. Some even go pain free on it! And it is just good for you. Give it a try as it can help quickly. Take the full regimen!!! You could notice a pain reduction in very short order. There is a great file on how to use your O2 to best advantage in the CB Files too. Proper breathing of your O2 can speed your aborts and reduce the amount of O2 you need per hit. The way these medicines are used is pretty specific and based on a lot of CH heads out there. I'm sure that your friend means well, but the advice is not quite hitting the mark here. ATB

Please don't beat yourself up over the wine!!! Most of us can drink alcohol out of cycle without any issues. So, how would you even think about it? I highly doubt that your husband blames you. Pred. is not a good long term medicine due to the side effects. Verapamil is good for many. How much is he taking? The short acting is better for CH than the extended release from my reading and experience. Also, the CH gets worse as you taper down the Pred. It is often used as a bridging med until the Verap. kicks in. Not good for the long term at all. The amount of Verapamil he can take is partially determined by his blood pressure. It lowers your BP. So, too much for one person is fine for another. D3 Regimen is great for a whole lot of people. I would recommend getting those vitamins for him. He could get some relief in days or a few weeks. Personally, it has reduced the intensity and ramp up time. I would hate to have to give it up. He can down an energy drink or shot quickly at the start of a hit. Most like them cold and slam them down quick, like on the way to the O2. Sleeping partially reclined in a recliner helps many as well. Just keep his head up a bit above his heart. I pack pillows around to relax. Melatonin in the 9-25mg range can be a big help too. Start out with about 9mg. See how he feels. If he does not get relief at that level, you can increase the dose. There are several foods that trigger different people. Chocolate being one. MSG is a big No No too. Perhaps CHF can bring up that list of food triggers for us? I am not up to full speed on the new format. Again, you need a big hug, not to blame yourself. And remember, CH is really good at changing on us!!! You can be chronic one year and episodic the next. It just does it's own thing and we fight back. A 3 or 4 year break is really terrific!!! The return of the beast is the pits. ATB

Only one thing to add here. Sleeping in can adversely affect your CH. It can be set off if you change your sleeping schedule. Many find that sticking to a regular sleep schedule helps a lot. This weather is hard on many, with the falling barometric pressure of a weather front moving in setting off a lot of heads!!! Not much we can do about that one. The amount of Verap. you can tolerate is at least partially determined by your normal blood pressure since it lowers your BP. Personally, I have found the D3 Regimen to be a huge help. Are you seeing a Neurologist or Family doctor? A good Neuro would be your best bet in the medical field. Especially one who is a Headache Specialist. Well.That turned out to be more than one addition!

CHF, It is normally 100/75. The Verap. lowered it to 80/60. That is why I could not tolerate a higher dose when the 240mg stopped working. Verap. could be bad for her even at low doses. Glad her doctor took that into consideration!!

Hi Laura! Good to hear from you, but sorry you are going thru a rough spot. Yes, we do have some members who have gone from chronic to episodic. How? Not sure. But busting helped a few get there, much to their surprise. What are you doing for yours now?

Hi Malte! Verapamil lowers your blood pressure. If yours is naturally low, dizziness and exhaustion can be experienced as side effects. I could only take 240mg because my resting BP was 80/60 at night. That was with the extended release version. Went to the short acting version to mitigate the low BP. Found out that the short acting works better for us anyway. Many can take a much higher dose with no issues. Initially, it worked for me within a week. It never shortened a cycle. ATB

HI Chris! Cycle for me runs from he fall Equinox to the spring Equinox. So, yes! Glad you have your O2 ready. Always a good thing to do. I stay on the D3 all year. It has been a huge help. I just cut back to 5,000 units of D3 in summer and go up to 10,000 in September. Stay ahead of it!!

Good to hear from you Ting!! It has been a long time. I love how the medicine just dropped in for you. How long did the experience last? Yes, it will be interesting to see how long your relief lasts. Hugs!!!

I wonder if your 'Cluster knot' is pressing on a nerve? Mine forms just below the skull on the CH side and stays for a full cycle if it is a bad one. Just prior to a hit, it would really start to hurt. Seems logical as the nerves exit the spinal column and go to the arms.

Well, having been there and done something similar to that years ago, I understand that you felt pretty darned rotten Denny!! Glad that you are back and better now!!!

Hey SOS, Well, there is ongoing debate on whether weed helps or hurts. Seems to depend on Indica or Sativa. Most use it after a hit is over. Some say it will trigger a hit for them. Most would avoid alcohol completely. Dropping both of these substances for now would be my recommendation. CH has it's own way of messing with us. Like changing!! Not the time to worry about becoming chronic. That means only having about 2 weeks PF in a year. Have you tried upping your seeds? You say these are lower level hits, so that might help. Also be aware that falling barometric pressure can have a bad effect on your head. It is that time of year.

Yes, to my knowledge, you need to take all the supplements. Just doing part of it is not advised. Personally, I stay on it year round. I have my D levels checked every year.

The problem with verap. is that it lowers your blood pressure. So, if you have low BP to start with, going up to 360 or higher would not be a good idea. At 360, my BP was 80/60 at rest. 240 was the max that I could safely take.