spiny

Yep. CHF is correct. I used to count breathes till the pain was gone and then do the same for post dose part. Finally realized that I was counting rapid breathing breaths and cut the count for the post dose part. Saved a lot of O2 that way. Remember to dial the flow back to match your slowed breathing. It can be a pain when you are tired but it is soooo worth it!!!

Start at a flow that keeps up with your breathing. If you need 25lpm to fill the bag in time for the next breath, that is what you use. Then, as your breathing slows, dial it down. It all depends on your lung capacity as to what you set it at. Just be sure to do your post hit O2 time!!! That really matters. You will find that new mask works great too.

I used the short acting variety since I had read that it was more effective. Being a nocturnal CHer, I asked my doc about taking one in the am, one at bedtime, and one in the middle of the night. He was fine with it as long as I spaced the doses out like I would during the day. Doubling up at bedtime was not approved. It did not help.

Hey Defiance, Sorry it took a while to get back. I up mine by 10mg, but I am used to how I react to it. I second the suggestion to up by 5mg increases to start. If you can find the extended release, give it a try. I think I got some at Walmart. The type does not matter for me, but others do prefer the extended release type. Take about 30 minutes before bedtime and get ready for bed. It should kick in about right. I would also start at 10mg because many take 20mg or more to get relief. The small amount that works for CHR's daughter is not the norm. Many people have tried it starting at 3mg with no help. Looking for relief, I would start with 10mg. Especially if he does not have to be at work in the am.

Morning Defiance, First , thanks for helping your dad. We love supporters!! Verapamil: Depending on the dose he may feel tired. I had no side effects from verap, but that is possibly because I could only take 240mg per day. It lowers blood pressure so if you BP is low you can be limited on the amount that you can take. Many go much higher without a dangerous drop in BP. Being tired is the most significant side effect that I have heard of. Melatonin: It works for me. I take up to 30mg. But, for starters I would suggest 10mg. He can work up from there until he notices relief. It helps me a lot in cycle. Some say 25mg is the top limit. It makes you groggy, but you are taking it at night when you want to be sleepy anyway. D3: The D3 regimen can be found in the Clusterbuster Files Board. It is simple, easy, and without side effects to my knowledge. It works great for many sufferers and just involves a trip to the pharmacy. Please check into it. O2: Getting O2 can be a hassle. Hopefully you can get that worked out with insurance. If not, using welding O2 is an option. O2 is the best abortive available. He should try an energy drink or coffee at the first sign of a hit. It is possible to avoid a hit by slamming some caffeine at the very beginning of it. That is quick and easy to try. Many use 5 Hour Energy because it is easy to carry in a pocket. Thanks again for advocating on behalf of your father. Love your attitude as expressed in your handle!! spiny

Hey swiftlaw! That soreness can become a problem all on its' own in my book. One cycle, it got so bad that I could count the number of hairs on that side of my head for months. Shampooing was misery. So was brushing my hair. The nerves were just on fire. Other times, I get the major soreness that it seems you are experiencing now. Hurting from an invisible disease sucks all around. Vent away!!

So sorry for your pain! It is scary to be hurting with no good answer as to why. CHF has pointed you in a good direction with Hemicrania information. A neurologist should be able to sort it out for you. Ice Pick headaches sometimes accompany migraine. They are short, very painful stabs to the eye for most. The migraine is not short and can last for hours or days. But, you can get several ice picks per day as they are usually short and intense. My son has both that seem to appear more frequently depending on the season and his stress levels. Some last 30-60 seconds and can take him to his knees. I suspect that frequent stabs could make your eye red and swollen, but is only a suspicion. The good news is that for Hemicrania there is a medication that works very well - Indomethacin. The bad news is that your appointment is a month out. The waiting can be horrible. I second CHF's question regarding the O2. Did it help? How were you told to use it and how high was the flow rate? O2 only helps CH to my knowledge. And if the headache returns I would definitely grab some caffeine and slam it down at the very beginning of the head pain! If you continue to have this pain, you might try returning to the same ER for a follow up, explaining that your appt is still weeks out and your pain is still horrible. Perhaps that would help push the Neuro to see you sooner? Could be worth a shot. Especially with the visible eye issues. i would take a headache/ice pick diary with me to the ER. They might not understand it, but they will see the frequency of the pain that you are dealing with. How are you today? Still having the jabs and no major headache with them?

No usually a problem here, but fumes are a trigger for many. Hopefully your wife will come to understand and accept that you just can't handle them. Or some of them anyway. I am allergic to many perfumes and a lot of candle scents. I start coughing and sneezing right quick. Then, the 'offender' looks at me like I am going to give her the plague!!! On a few occasions I have told them that I am allergic to their perfume on my way out the door.

I have not found this to be the case for me. On the other hand, being sick is stressful. Stress can play a big role in CH for some. So, they might have the common denominator of stress perhaps? Keep asking questions. We all learn by them and we have been where you are right now in years past. There is not a single CHer who does not want to know why they occur and how to prevent or stop them. Nothing like having a disorder with no known exact cause or cure to send you into research!!!

Dan, that is terrific news. And I call it really wonderful considering your work schedule!

It sounds like you are off to a good start. I think one of the main things regarding O2 is to exhale completely with force so you can get plenty of O2 in there and get rid of the nitrogen ( I think that is the main one). At the beginning you likely will hyperventilate which is good. Just breath out hard, breath in deep, and try to hold the O2 in your lungs for a moment before exhaling. Looking down at the floor also helps some. Also, you must do your post hit time. After the pain is gone, stay on your O2, at a lower flow to facilitate normal breathing. Just relax for this part. This part is what helps to prevent the quick return of the pain.

Emily, I have dealt with these off and on for some 40 plus years. I have only experienced nausea the last several years on a few occasions. I was unpleasantly shocked when that happened. So, not common for me, but sometimes I get that double whammy too. It sucks.

Not an issue! How are you doing? Stating your own thread just offers members a chance to meet you and understand were you are and where you have already been. Your getting here is the main thing. A lot of us start out the same way. I did as I remember. We want to help to get to a better place, That is the main thing.

Pred is a steroid that is often prescribed as a bridging med to get you thru until another med (often Verapamil) kicks in. It is prescribed most often as a taper - like 5 pills the first day 4 the next and on down. Sometimes a longer taper (10 days to 2 weeks) is given. It is not a drug you want to take for a long time due to the many side effects and eventual permanent bone damage. Like the kind where you now need a hip replacement or two!!! spiny

Welcome Kelly! I do not know if they are mutually exclusive or not. But they are very different. I suspect that you have already looked them up at this point. The treatment is different regarding what is prescribed by your doctor. It would be a great idea to start your own thread. The neck pain is rather common. You can get what is referred to as a ' Cluster Knot' pretty often. It does not disappear when the CH hit is over after a few hits. Just hangs around and drives you nuts!!! Some are prescribed a muscle relaxer or Valium for the pain. Especially if it interferes with sleep. If it is all over pain, it would likely be what is called a 'shadow' . I see where this has been addressed on another thread. I don't think that all suffers have the full symptoms with their eye. With Horners Syndrome (something to look up) you will eventually get a constricted pupil that does not fully dilate in low light. The drooping seems to get worse as a cycle and hits add up. I look forward to reading more.

Hi Emily! Perhaps you are referring to a sugar crash after about 20-30 minutes after the energy drink. As a Hypoglycemic, I avoid most sugar to eliminate the low blood sugar pounder of a headache I get following sugar intake without a protein followup. Most of the energy drinks do not contain sugar the last time I checked. They use a sugar substitute. If you can stand the sweetness of the 'pretend' sugar you should be ok. I can't handle any of them due to the sweetness. As in they come right back up for me. But, I have found that coffee works quite well. In addition, I use the V8 Energy brand of caffeine too. It contains sugar, but a spoonful of peanut butter in 20 minutes or so prevents any crash. Since I usually know a hit is coming by looking at the clock, I can take in my caffeine prior to the hit and avoid some of them. I do find that cold is better than hot or room temp for me.

Ouch! Rotating shifts suck all around. Been there myself.

Just a quick word to add here. Sumatriptan is known to increase the number of hits and/or prolong a cycle for some who take it. So, it could be part of the problem. Verapamil is usually the best preventative in Pharma. You are started on a dose of X. Then, it is increased incrementally until relief is attained. O2 is usually your best friend for aborts. Non-toxic and very quick aborts with proper flow and breathing techniques. And, of course, there is the 'morphing' problem where your CH will just change on its; own which may be part of what is happening. I am very sorry that it returned for you.

Are you on a set shift schedule or rotating shift? With a set shift you can help yourself by maintaining that sleep pattern on your off days. Your body adjusts to it and deviation from a 'normal' for you sleep schedule is similar to taking naps. It can set off the hits if you nap.

Hi Emily! I have found that the longer the cycle, the more Horners Syndrome sets in for me. It will constrict the the pupil in that eye. If you look at your pupils in low light, the one that is on your CH side likely will not dilate to the same degree that the other eye does. It does mess with my vision. Is it more sensitive? Well, i guess that depends on your definition of sensitive. I may be completely off base here regarding your question. But, just testing it can be enlightening. I look forward to reading the answers to CHF's questions. If you slam down an energy drink or some form of caffeine at the first sign of a hit you can often avoid the hit totally. I would keep this with me at all times at work! Preferably refrigerated. If you have a prescription for O2 then keep a small portable tank at work for aborts. You can be back to work in just a few minutes with O2. I find that these are the two best aids in this situation. Once your boss understands the situation he/she is likely going to supportive in your efforts to control it and continue your day in short order. spiny

Great post and welcome Dan. You have really done your homework well. Just a bit of encouragement here. D3 has helped many go PF all by itself. It seems that episodics benefit the most from it. Melatonin is a great help to many of us as well. I use both methods to great benefit. I use 20-30mg per night depending on cycle status. I too am one of the lucky ones in that dept too. As well as the feet in screaming hot water in for emergencies when the O2 is not available. And I can down caffeine at night with only positive results. You can look kinda of funny with your feet getting cooked while you slam down that caffeine!! Your post sounds like you have set yourself up for success very well. Keep us posted and question away if needed!! If you have questions regarding busting, the closed boards will give you more feedback on that aspect of treatment - Share Your Busting Stories and Theory and Implementation. Congrats to you and I look forward to following your progress!!

Hahaha!! So efficient with that canula right Jeebs? Do you still have that Demand Mask?

Welcome! CHF has gotten you off to a great start on questions and information. We have and use several methods to get thru the hits or to abort them. O2 being the most important to most sufferers. Is your husband chronic or episodic? And is his new doctor a neurologist or headache specialist? Most doctors DO not know how to treat this condition unfortunately. That makes this site a real treasure trove of information. Many of us were in the same position as your husband when we got here. Daily hits with little to zero relief. And that made life really suck. Nothing like another clusterhead to understand his pain and yours as well. We love our supporters. They go thru their own suffering just watching, unable to help. Read and question. We are here to help. And yes, I do understand what you mean regarding the long sleepless nights and now having this site to fill some of that time and gain knowledge as you go. It was how I spent many a sleepless painful night not so many years ago. Hugs! spiny

Welcome Bbev! Glad that you found us but very sorry that you have to be here. How old is your little boy? Did his doctor show you any breathing techniques for his O2? It is such life saver for most of us when used correctly. When I read about kids with this condition it really hurts. It is good to read of your support for him. Is he on any preventative medication as well? spiny

Interesting question Mit! I have not used it as a preventative, but I have used the same breathing techniques with plain air when caught out and actually found it helpful in pushing back a hit. Then I hit the caffeine as soon as possible. One of those panicked 'Lets' try try this!!!' that actually worked.