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ClusterBusters

spiny

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spiny last won the day on December 26 2018

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  1. spiny

    I can't make this one go away

    Welcome Elrik. Most find 10lpm to be too low. The recommendation is 15lpm and many of us need 25lpm at the start. I tried 10lpm at my PCP's office a long time ago. Neither of us knowing any particular method, I just breathed it rather fast. You need technique to get it aborted quickly. And you need to stay on itfor 5-10 minutes after your pain is gone completely. Cheat and you likely will get hit again right quick. How are you breathing it? Napping is a big no-no for most. A nap will bring on a hit it seems. As you wake with one. If you are exhausted, you sleep too long and wake with a bruiser. It sucks when you are so tired. Keeping to a consistent sleep schedule is a really good idea. What do you take as a preventative? Triptans are for aborting. You need something to prevent if possible. The most commonly used drug is Verapamil. Often in pretty high doses. Did your neuro put you on a preventative? Any caffeine taken at the first sign of a hit will help. Many like Energy drinks or shots as they feel the taurine in them is a help. Some use strong coffee because that is what is available to them. Do not wait till it is screaming to drink your caffeine! If all the neuro gave you is O2 at too low of a flow and triptans, you might need a new one. You need a preventative in addition to an abortive. ATB
  2. spiny

    Happy Holidays and thank you

    May you have a lovely holiday Jimmy!!
  3. spiny

    Women with CH

    Interesting abstract Cheryl. I had a long remission that ended in my 50's. They returned with fury too. Previously I had been Chronic with lower level pain and no nocturnal hits. When they returned 15 years ago I was Episodic and Nocturnal. Untreated or poorly treated, my cycle runs Solstice to Solstice. Unless it gets prolonged by a surgery or something That produced an 8 month cycle a few years back. Several males have had long remissions too. Upon return several changes are notated, such as going from daily attacks to nocturnal attacks. Also, the greater severity is common too. So I would say that the changes you are experiencing are rather common. I suspect that you have looked at the Trigeminal Nerve diagram. It shows all the branches involved with that nerve. The three main branches are over the eye, under the eye, and the jaw. So, that covers all the nerves on the entire side of your face on your CH side. Teeth and sinuses included. As far as rain is concerned, it usually includes a low pressure front. For whatever reason it is falling barometric as opposed to rising that sets my head off. That is pretty common. It is also common for migraines. Verapamil is top med for it too, not Topamax. In addition, pred is awful for you over the long haul. Like needing hip replacement awful. It is normally used as a 'bridge' medication to get you thru till the Verap kicks in. You might discuss a medication change with your doctor. And he should know to provide you with O2!!!! It is the best abortive out there and not harmful to your body. It is infuriating when this is not offered as a first line of treatment!! Advance warning - Medicare does not cover O2. You might want to try some caffeine at the first sign of a hit coming. It can be a great help. Also, you can set up a welding O2 tank and buy your own O2 without insurance or a script. You will need a non-rebreather mask to use with it for best aborts. Oh! Don't worry about being Chronic yet. That means you have less than 2 weeks pain free in a year. It is quite likely that come spring your cycle will end. ATB
  4. spiny

    Pounding Head, Broken Heart

    Sorry to read this Moxie. There are no words that help, but you know that you have friends here who support you.
  5. spiny

    Women with CH

    Hey Cheryl. Can you tell me where you read this info? It is interesting. It is nice that the stats are changing on who gets CH. It used to be stated as 2 out of 10 are female. Now that is stated many places as 4 out of 10. A welcome change. Barometric changes and changes in sleep times are riggers for many. My head is a pretty good barometer!
  6. Small suggestion here. You currently have a non-rebreather mask with a bag that does not support your breathing. You can take an unscented fresh garbage bag and use that instead of that little thing giving you a hard time. Tie up the open end tightly. As in air won't leak tight. Now, cut a hole in a corner where you are going to either push the stub of the previous bag or the bag with the bottom cut out. Remove or open the bottom of the bag on your mask and insert what is still attached into the garbage bag. Tape that up really well. Now you have a really big bag to hold your O2! Then you will have the pleasure of plenty of O2 for your next breath waiting for you - not you waiting for it. Not the best rig, but beats out running your O2. Turn on your O2 and grab a few slurps of that caffeine while it gets up to speed. Less than a minute and you are on it. That should get you through until your cluster mask gets there. Personally, if I can't get the high flow needed, it is a waste of money to use it. Takes a looong time to get relief and the relief is not lasting at all. Like executing a bat turn in the living room and heading back to the office cause it is back not lasting. When doing your post hit breathing, dial the O2 back to match your breathing. You should be breathing at a normal rate at that time, so you won't likely need 15 or 25lpm. And no grease or oil or anything on the threads of anything where you are pumping O2. THMH gave you a great primer on that one. One more item. Try holding a full inhale of O2 for 10-20 seconds. It really does help. Then exhale with that crunch. Works great. As your pain levels drop, you can relax a bit on your breathing technique. By the end, you should be breathing normally.
  7. spiny

    I'm so excited I have to tell someone

    What fun!!! Glad you got a giggle out of it and sent them elsewhere.
  8. spiny

    Help - cold meds

    Caffeine can help with shadows. An energy drink or shot is best. Coffee works well for me. Benadryl is good actually for CH. Part of the D3 Regimen. It will make you sleepy, so I would try one at a time during the day. Are you on the D3 Regimen? It really helps a LOT of CHers. ATB
  9. I agree with Denny. Message Dr. M. Hopefully he has some good ideas for your member.
  10. spiny

    CBD Dosage

    Hey there! I take CBD for other issues. But, mine came with a chart detailing how much to take based on weight. If you have some CBD already, I suggest you contact the company if they did not supply this info to you. They should be able to tell you how much to take daily. ATB!
  11. Barometric pressure drop is caused by everything you named plus flying. I asked for a good nautical barometer for Christmas one year it is so stinking important! I live on a mountain, so traveling is always an issue for me. Watch your weather fronts moving in for low pressure fronts. All the best to you!! I hope you got a good nights sleep too.
  12. Hey Jimmy, I had a ten year break from them. No reason as to how or why, but they just vanished. And when they returned, I was Episodic , not Chronic. Untreated, I will have a 6 -8 month cycle that starts in September. I will say that during my years as a Chronic they were milder than what I get now. Now they are screamers. So lower frequency, but much higher leel of pain is my part of the elephant now. And I am extremely sensitive to barometric pressure drops now. So, if the weather is going hinky I know to prepare. When I was young they were 20 minutes long - always. And only daytime hits. Now they last 2.25 hours if untreated. They start at bedtime and run till 6am every night. Untreated they last 2.25 hours and I get a fifteen minute break before the next hit. So, just pointing out that the beast will change all by itself, if and when it gets ready. We are just along for the ride. It teaches you be viligent at all times. So yes, you can get a reprieve of many years.
  13. Hey Jimmy! Have you tried an energy drink or shot at the first sign of a hit? It can really help. Actually, caffeine is our friend. I think that THMH was referring to not taking Verapamil, not Melatonin. He will straighten me out if I am wrong. He can't take Verap due to heart response to it. If you do the full D3 Regimen, including the Benadryl, I would not suggest you take Benaryl and Melatonin both at night. You need to see how the Benadryl affects you first I think. At any reate, they will both make you sleepy and banging around in the night is not a good feeling. Try the Benadryl and then add Melatonin later if you need it.
  14. spiny

    Okay to take Verapamil and Hemp Oil Extract?

    To my knowledge, there is not an issue. I take CBD Oil and I just called the manufacturer with your question. Their 'hard - do not cross' line is to separate your CBD by two hours from any other meds, including OTC like Tylenol. People forget Tylenol is a med and often do not think about that one. But it puts two meds in competition without the gap between injestion. Hope this helps you!
  15. spiny

    O2 prescription

    Way to go Rose!!! Have you looked into the D3 Regimen? It consists of OTC vitamins. It has been a huge help for a lot of us. It is advisable to get your D3 levels checked by your doctor first. She sounds like she would be ammenable to doing that now for you. Then, start taking the vitamins. At the least they will slow ramp up time down for you and reduce the intensity of the hits you get. I take them year round as do many here. Healthy, ya know?
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