spiny

Kelly, Where are you located? You are quoting a different measurement of D from what is used in the US. Here it is measured as ng/ml and the range is 30-100. Europeans use a different standard of measure and different levels based on their unit of measure. Apples to apples comparison is not going on here. What unit of measure is quoted when stating that normal is 25? 25 what?

While steroids will not break a cycle, they can give you a few days of pain free living. Generally, as your daily dose is reduced the CH will return. Steroids are usually used as a 'bridging' medication to provide relief while a preventative such as Verapamil builds up in your system. I would definitely discuss the D3 Regimen with your OB and see if it is acceptable. Vitamins. Just vitamins. This regimen has helped many avoid a cycle or stop one. I would not think that the vitamins are contraindicated during pregnancy.

Hi Dreamer, I always wait a few weeks to do the alcohol test. I have not found that it prolongs the cycle. But if the cycle is not gone it will surely trigger a hit. And I have had alcohol trigger a random hit a few times over the years.

Perhaps it is just too early, but I cannot find the original statement about a knot or swelling at the back of the neck!!! In my experience, yes, you can get what is often called a 'Cluster Knot'. Often at the base of the skull on the CH side. It hurts and does not respond to massage. It can cause pain in the neck to accompany the CH head pain. Not fun. For me, as a cycle progresses, the knot gets worse. On occasion neck pain is the first sign that a hit is coming.

Hey Cory!! Yes, push him to go back on the D3 regimen!! Good luck with all your school and work there!

Hi kuhrnes, There are a few things that you can do on your own for hits (headaches). The first thing, other than O2 is to grab some caffeine right quick. Energy drinks are a favorite. Everything from Monster to 5 Hour Energy, Cold is best for most sufferers. Drink it down as fast as possible at the first sign of a hit. O2 will be the best abortive out there unless you are taking triptan shots for the pain. You don't mention O2. Perhaps it was not prescribed!! O2 at 25LPM breathed using a non-rebreather mask is the best abortive. When you see your doctor, getting a prescription for O2 should be a priority!! If you go to the Clusterbuster Files, read the D3 regimen. It is a daily course of vitamins that has helped a lot of people stop or reduce the severity of their hits. Very easy and cheap medicine. Something that you can do on your own. Verapamil is the most commonly prescribed preventative in the States. It is for lowering BP. Cluster heads can usually take a lot of it. In addition to O2 and Verap, a doctor will often prescribe a 'bridging' medicine like Prednisone to take while the Verapamil builds up in your system. Pred is not to be taken over a long term, but short term it can be a big help. You can put your feet in screaming hot water at the first sign too. Chug your caffeine and pop your feet into a few inches of really hot water. Some will take an ice cube and use their tongue to hold it on the roof of their mouth on the CH side as well. Small things to get you thru. I hope that you get into that Specialist very soon and get some proper treatment!!! Pain meds are not very successful in treating CH. What were you put on for your Blood Pressure?

Some people cannot take the high dosage due to normal low blood pressure. Verap lowers your BP. Personally, 240mg/day lowered my resting rate to 80/60. For those who can take the higher doses, it can be a very effective drug.

Thank you!!! It is cool regarding the advances. I had to stay prone and still for mine. Don't know what the issue with the Beta was, but they surely were scratching their heads over it. Asymmetrical might have been the issue.Due to being hit on one side of the head. I do remember them pointing out the difference in amplitude!! That goop is a misery to remove from long hair!!!!!

Hi Toni! I would add to CHF's post that you should get his pediatrician to send him to a Pediatric Neurologist. He is young and has other issues, so I am suggesting pediatric.One with headache experience would be best. I have Autism and Asperger's in my family. Autistics need that 'special' someone to treat them. To understand them. For them to open up to. A pediatric neuro would be easier to find than a pediatric headache neuro. If that can't be accomplished because there is not one, then a regular headache specialist neuro. Mine started as 20 minute long hits. Meds cannot help in that short of a time frame very well. If he can get O2 that would be heavenly. No meds work as well as O2 in killing a headache. Yes, there are triptans, but I would try to post phone them for a later date, when he is older. They certainly sound like Clusters to me. You will be glad that you found us. You are being a very good advocate for your son. Hugs!!!

Glad that you started this thread! Indomethacin is a good one to try. It works for HC, but not for CH. So, it can rule one out at the very least. Process of elimination is helpful. Let us know if it works!!! Taking care of your Mom is quite a job all by itself. This must be very difficult all around.

I would be very interested in the EEG results. I had one in the 70's. It showed altered Beta Waves, whatever that means. Doc's could not explain it. Said it might be related to a concussion. Never did find our what it meant either!!! They were surprised with the printout though.

Hi justcurious! Do you have a Neuro? What you are describing is unusual to me. I would definitely want it checked out by a competent Doc. Your symptoms appear to be a bit different from what I have and what I have read. It is a good idea to start your own thread so you get more attention. A bit of back ground is usually a help too. Being in constant pain makes that a chore, I understand. But it can help you. You may be experiencing 'shadows' between clusters. Or you might not. I am concerned that you are talking constant pain and it is affecting both eyes, not just one. Never are you disturbing us by asking questions! We all started out that way. If you don't ask, you don't get answers, right? Ask away.

Hi there!! I agree that what you are describing is what many of us experience. Another check that you can do is to look at your pupils in low light. The pupil on the CH side will fail to dilate as much as the other one. The further you get into cycle, the more obvious this becomes. That is why your vision goes weird during a hit (attack). Most doc's use a high intensity light to see if they dilate at the same rate. But they do not check for failure to dilate. I had to show my Neuro this trick. Messes with your night vision. At work, try to keep some caffeine handy. 5 hour energy is very small and easy to keep handy. Hit it at the first symptom!! For some, an ice cube held against the roof of your mouth can help too. Working thru these is hell. But, you seem to be doing a pretty good job of it!!! And, you can hyperventilate with just air. Empty your lungs forcefully, inhale deeply, hold for a few seconds and repeat. Not the best solution, but it can help. You can also hit the caffeine just prior to an expected hit. It can postpone or prevent the hit sometimes. I use this method still. It helps me many days. I had to take a print out of Cluster Headaches to my PA initially and make him read it. He kept trying the migraine thing, since I am female. That was 15 years ago. I have had these since the 70's. They started to get really bad in the 90's. Like every night all night bad. The D3 regimen is a miracle for some CHer's. It is cheap and easy and good for you. For me, it reduces the intensity and slows the ramp-up. Some people get complete relief just from taking these vitamins. Well worth the effort. And, they are figuring out that a decimal was misplaced when they came out with the 400 units per day recommendation. It should be 4,000 for everyone. Oops! A specialist is a good idea, but you can get help without one if needed. They usually will order an MRI to rule out other issues. Any doc can order one. I am delighted at the research that you have already done on your own behalf!! Being a strong advocate for yourself is the way to go. Do not let them put you on a medication and tell you to come back in six months!! You will know if it is working in a few weeks. If it is not, get back to your doc. No reason to keep taking something that is not working. The main line of defense is usually Verapamil. If your doc prescribes that, he has some knowledge of the condition. Starting on a preventative before a cycle is much better than trying to attack it when the cycle is already up there. So, you are on the right track by jumping ahead of it. Perhaps CHF could attach those papers in a pm? Might work. There is a great one to show co-workers and employers. spiny

Hi CH-Larry, I suggest that you read the Clusterbuster Files section of the board. A ton of great info there. Melatonin does not help me until I reach 20mg. If you are getting an hour PF from the O2, that is still better than a 10 minute return of the beast. O2 does not prevent the next hit - just kills the current one. If you get nocturnal hits, try sleeping in a recliner, partly reclined with your head above your heart. It helps many. And, if you get hit, you wake faster too. Don't nap. That will bring on a hit for many if not most of us. Grab that caffeine on your way to the O2. Chug it down fast and hit the O2. That seems to give the best results for a lot of us. Are you doing a post hit few minutes on your O2? Necessary. If you with to discuss busting, start a new thread in one of the closed boards - Share your Busting Stories or Theory and Implementation. Those boards are closed to the public. Keeps the bots away! Pred is used as a 'bridging' med. Just to help till a new med gets working. And sometimes to provide a break in a bad cycle. Long term use is not good for your body. ATB

Welcome Samuel!! I agree about starting on the D3 regimen. It can work quickly to eliminate or reduce the pain of your hits. Easy to source and take. Caffeine works great a most of the time too. Even at night, it does not keep me up after a hit. I can go right back to sleep. I have slammed some caffeine and then used the same breathing techniques for O2 with just air in a pinch. That also seems to help. These few things can really help while you look for O2 or anything else to kill the cycle.

What wonderful news to read this am Bob!!!! And on the 4th of July too. Hugs to both of you.

My bathtub method: Grab a can of caffeine while running the water, stick feet in steaming water and slam the drink . I use a washcloth on my face while doing this. If it is really bad, I will put in several inches of screaming hot water and sit in it. It works well in a pinch. Not perfect, but very helpful if there is no O2 in the house.

Cool Mit! It is recommended to hold that inhale briefly, so holding it longer makes sense to me. Pretty much, you will find the method that works best for you and that is what you want!!

That is great that you have a neuro now. An Mri is a very good diagnostic tool to rule out other conditions. Always a good idea to have one. And it is wonderful that you have reached PF status!!!! Congratulations. The end of a cycle is something to celebrate.

Bob, I really hope the labs are good for Mary. I know this is very hard, but you are by her side which counts for a lot. All the best to both of you. All positive thoughts being sent. She will be included in my midnight musing. Glad that you checked in!!!! We should re-name you Mr Busy Wold.

Keep us posted Razor! Great that you are having positive results there.

Niles that is great news!!!!

If you buy the tank, any O2 supplier can fill it. If you rent it, you must have it filled by the company you are renting from.

Hey there!! What he is going thru sucks big time. I am sure that you are handing him some caffeine first thing. He needs to let you know when I first starts. If you watch him you might even beat him to the draw on that one. Head or face rubbing can be not noticed by the CHer, but family will see it. Other emergency measures include putting an ice cube on the roof of his mouth at the start and sucking on it. Sticking his nose up next to the AC vent of the car with the air running wide open. Running a few inches of screaming hot water in the tub to stick his feet in. Then putting a cloth on the painful area - hot or cold depending on what works for him. Some go for the shower method - using either hot or cold as their head dictates. Some rub the painful area with an ice cube too. Keep him from getting too hot. No outside in the heat work for now. Just let him move as the pain dictates. Restless movement due to the pain is part of the condition. You don't want him to bang his head if he can help it. But, some banging is pretty common. Please, check out the D3 Regimen in the Clusterbuster Files section. It is easy, cheap, and effective for most. It can start working in days. Lowers the intensity and length of hits for a lot of us. For some, they go into remission with D3 alone. Great stuff there. It is as hard to watch a hit as to have one in my opinion. You feel helpless and that sucks. The emotional pain that a supporter feels is draining. Hang in there!!!! You will get this on the right track soon.

Hi Niles! Mine last 2.25 hours untreated. And some have longer hits. The lingering pain is not uncommon. Ginger in some form (tea, candy, etc) can kill them. You may notice a sore neck as well. A few months ago I had a terrible week due to severe stress and altitude change. I spent my nights with CH and days with migraines!!! I could barely walk by the time I went to the doctor. It had been five days of the mess by then. I was whipped. She gave me some Trex which I used during the day for the migraines and O2 at night for the CH. Got me thru. Pills and spray work best for migraine as it ramps up slowly. Shots are better for CH since it ramps up fast. The time frame is normally stated as say 30 minutes to 3 hours. But, these are averages written about. Some people are outliers from those averages. Whatever form of caffeine you select, drink it at the very first sign of a hit. And hammer your doc for O2!!!! The signs of Ch are different from the signs of migraine. So, does your nose or eye run during a hit? Is your pain wide open in a matter of minutes? Do you need to move constantly or do you want dark, quiet, and still with a hit? One says CH and the other says migraine. These are important things for diagnosing. Are you seeing a Neurologist? ATB