spiny

Welcome Jimmy! Your guess of weather and stress and diet can affect some Cher's. Pollen is also found to be a culprit. Melatonin is good for many with nighttime hits. Start with 9mg and work your way up to about 25mg. One the main page you will find the board Clusterbuster Files. It contains a thread regarding the D3 Regimen. It is recommended that Benadryl be added to the regimen now, especially when pollen is high. It is all vitamins and easy to get started on. Relief usually occurs in a week or two. Some go pain free (PF) on it and others get a reduction in severity and slower ramp up time. There is also a thread there about using O2. That can give you some really good pointers on how to use it effectively. Other aids are: Caffeine at the very start of a hit. It can be Energy drinks, Energy shots, or just coffee. If taken early, they can sometimes stop a hit and they help you get through. Most will take the caffeine when going for the O2 to reduce abort time too. People use hot or cold to their benefit as well. It can be a shower, very hot water in a tub to put your feet or body in, sticking your nose up to the AC vent in your car with it on full blast. Some find the high water consumption an aid. Others use deep breathing or exercise. Ginger, in any form helps with shadows. The Maxalt pills are usually too slow acting to really help CH. They are prescribed mostly for migrainers or by inexperienced doctors for CH. You can have a nasal spray prescribed or injections. Injections are the fastest. However. many clusterheads have noticed that the use of Triptans causes more hits and/or longer cycles. Nine pills a month is pretty standard for insurance. Sucks. I am surprised that you were not given a preventative like Verapamil by your Neuro! It is the 'go to' main med for CH. Then there is busting. Which a lot of CHers use to prevent and end cycles. Also in the clusterbuster files. It is also discussed on the Theory and Implementation and Share You Busting Stories files, which are closed to the public. I see that Denny just replied with some of the same info. ATB spiny

Glad to read that eric!!! Keep us posted, ok?

Just above this thread is the one. It has a pic of a push pin. click on the title. Fun Guy made the first post I think and it has a link in his post. That is the one to click on. And I see CHF has already replied!!

Rather common actually. Is it a CH or normal headache? MM can cause a headache apparently. But, aspirin or your favorite OTC is ok to take. There is a current thread regarding this on the board. Pixie provided a very comprehensive article on it there. Wish I had more time to look it up for you. Pull up her profile and it should show her recent posts I think.

If you go to the pinned item of Recommended Doctors list at the top of this page and open it, you will find a link in the first post. Click on it. There is a listing for Docs in FL. Hope that it includes one near you.

Welcome Brandy! Yes, that stuff is high dollar. Hopefully someone can tell you if there is a coupon. You are fortunate that they give you 12 a month. Many only cover or allow 9. If it has not been a month, you will pay a lot. Most won't fill it if it is less than a month. Is that the case? In the Clusterbuster Files is a thread on splitting injections I believe. It will allow you to get three shots instead of one from a 6mg injector. Two mg is sufficient for most Cher's. There is also a file on the D3 Regimen. Those vitamins have helped many go pain free and it lowers intensity for most who follow it. Just vitamins!! Imagine that. Do you have Oxygen? It is the best abortive for a hit. Can kill one in 5 minutes flat. Your Neuro should set you up with a script for O2. You can toss an Energy drink or shot down real quick at the start of a hit and sometimes kill it. There are some other methods that many use to cope. Melatonin at night 9mg up to about 25mg helps many with nocturnal hits. Wish that I could help you more.

You are now into some serious good reading sir. Glad to know it too. Ask questions if you read something that is not making sense. Some material is old too regarding how much of this and that. I cracked up at the knucklehead statement. Long time since I heard that favorite!

Hi jaymc! Check and check CHF! Yes, caffeine can help with shadows and so can O2. Ginger is great for shadows! I carry ginger candy. Traveling with CH can be tough. Especially changes in altitude and barometric pressure. So, if I am going to a higher altitude, I hit the caffeine first. It helps. If a weather front is moving in, again caffeine. Sometimes I carry chocolate coated coffee beans as a treat when needing some caffeine. Oh, by the way, the beast is well known for changing on you! I am sorry that you have had a turn for the worse this year. ATB spiny

Welcome Alex! Yes, I had a nice hiatus when I was younger. It was nice! Took Tegretol for years to keep it at bay. In the Clusterbuster Files you will find info on the D3 Regimen. It has worked wonders for a lot of people. While I have not gone PF (pain free) on it like some have, it has slowed the ramp up and lowered the intensity of my hits. Amazing for 'just vitamins'. And it can start to work quickly too! I would bet that if you had your D3 levels checked, they would be low. Most of us are. Push for the O2 at your appt.!!! It is the best abortive we have. I grab some caffeine and slam it down on my way to the O2. Cuts abort time by about half. There is a thread on O2 in the same files referenced above. It provides excellent advice on how to get the most out of your O2. O2 can be your best friend with the right flow rate (25 to 25lpm) and the right non-rebreather mask. As CHF stated, caffeine at the very beginning of a hit can prevent it sometimes. Some want Energy drinks or shots and others use coffee. Some take it hot and some take it cold. You will figure out which works best for you. You might be prescribed Imitrex in a nasal spray or shot form. Your insurance normally will only cover 9 shots per month and you can only take 2 in a 24 hour period. There is a way to break the system open and get 2 or 3 shots out of each one. I believe the shots are 6mg? Anyway, 2 is sufficient for most and 3 works well for anyone that I know of. Trex can be hard on your heart, so don't exceed dosage limits. Caffeine can kill a hit if taken early enough. If you are getting nocturnal hits, sleeping partially reclined in a recliner with your head above your heart can buy you some ZZZZZ's. And there is the busting method. That is discussed on the closed boards - Theory and Implementation and Share Your Busting Stories. And there is a lot of info on it in the Clusterbuster Files as well. You will be reading a lot! A lot of people miss Sansert. ATB spiny

Hey Jacob, Small suggestion. You are on the Extended Relief form of Verap it seems based on the twice a day dosing. It has been found that CHers do better with the old short acting version for some reason. You might try that. Be aware that Verap lowers blood pressure. This can be a limiting factor for some patients.with normally low blood pressure. Just something to keep in mind. I could not go higher than 240/day. I took 80mg in the am, 80 around 8pm and the last 80 during the night as my hits are primarily nocturnal and I was going to be up. Worked better for me that way. Even at that low level, my resting bp after the 8pm dose was 80/60.

Junco, you have found a LOT of support here. While I am sorry that you do not see it that way, I see no basis for your being upset with people who have tried to help you. I hope that you find some relief and peace. No one wants to see their life slipping thru their fingers without really living. ATB

Welcome Josh! Glad that you found us. There are a lot of things that you can do for CH. The first is to get a definite diagnosis from a Neurologist or Headache Specialist. They will likely order a scan - CT, MRI, or such. This is to rule out any other issues that could be causing your pain. Many of us have started out thinking that it was a sinus infection or dental problem. Some have had teeth pulled or sinus surgery before getting a proper diagnosis. Your PCP may or may not be familiar with CH. Most are not and you will need a referral. It sounds like CH. The main thing that you want is O2 with a non-rebreather mask and a flow of at least 15lpm. Preferably at 25lpm! You will find that it is your best friend when in cycle as it is the best abortive. The most commonly prescribed and effective medications are verapamil and Prednisone. The Pred is used short term until the Verap begins to work. Chers usually require high doses of Verap to get relief. Generally the short acting version is better than the Extended Release one. Likely you will start in the 240mg to 360mg per day range and work up from there. Imitrex is an abortive. It is available in pills, nasal spray, and injection. The pills are pretty useless for CH as they take too long to work. Injections work the fastest but you should not take more than 2 in a 24 hour period. Sprays are in the middle. In the meantime there are a few things that you can do for yourself. For many, an Energy Shot or any caffeine will hep a lot if downed at the first sign of a hit. Check the list of triggers that can be found in the Clusterbuster Files section. Alcohol is one of the main triggers and should be avoided. Sleeping can bring on a hit, but sleeping in a recliner with your head elevated above your heart can help with nocturnal hits. Many apply hot or cold to the painful area, whichever works for you. You can deep breath - emptying your lungs completely on exhale and inhaling deeply. This helps remove the Nitrogen from your lungs and get in more O2. Some put their feet into water as hot as they can stand it. Others swear by vigorous exercise. Keep a regular sleep schedule! Naps can often be a trigger. Read thru some of the Clusterbuster Files. They will give you a lot of info. The closed boards (Share your Busting Stories and Theory and Implementation) discuss alternative treatments. Ask questions! Others will chime in with suggestions for relief. Everyone here knows your pain. Know that you are not alone! We are here to help. ATB spiny

Jacob, The 'breathing deeply' while you pace is likely the key to it helping. I do deep breathing as soon as I feel the hit. In deep and out with force and a crunch at the end. This has helped shorten O2 time and is really great if I am stuck in public with a hit. Lately I found out that I am not the only doing this and having it work. Our most esteemed Batch wrote about it recently. You are getting rid of the Nitrogen and that is what helps.

80mg x3 is a fairly standard starting dosage for Verap. The dosage goes up from there to as high as 900mg or so. Your GP did you a huge dis-service by reducing it for personal not medical reasons.. Adding the Trokendi XR is adding insult to injury. It is for Migraines of course. So, strike two for me. Yes, those side effects are awful. Don't think that I want glaucoma or blindness thank you. All of those symptoms should be reported to him!! They suck and can be dangerous. Especially the eye issues. It is an anti-convulsion medicine passed down to migrainers and then thrown at CH to see if it sticks!! I can't wait to read that you got a proper diagnosis and treatment with the Neuro! Just a few more days until you get some medical help I hope. Have you tried any of the suggestions given above? Please push for the O2 and take an advocate with you. Perhaps Mom, since she would have rescued you! Or someone who saw one of your attacks.

Welcome Nicole! Trying the 3 Regimen could be a big help for you. Just vitamins. It can be found in the ClusterBuster Files board. A Neuro is likely to look askance at the idea that vitamins can help what morphine won't. It can lower the intensity of your hits and slow the pain ramp up. Cheap, good for you, and legal. Pushing hard for O2 should be at the top of your list when you see him. What country are you in? That can make a difference on the O2 script. Some doctors will give you a hard time over the O2, so be prepared. It is the number one abortive out there!! This is where your advocate can help a lot. It shocks me how many Neuro's have not learned how to treat Clusters. Those of us over 65 often use welding O2 because insurance won't pay for O2. Also, many don't describe how to use it. We can do that. You want a regulator that goes up to at least 15lpm. Preferably 25lpm. Along with a non-rebreather mask or tube. You can learn how to use it effectively here. Drinking an energy drink as fast as possible at the very start of the hit can help kill a hit. I use coffee as the energy drinks make me sick. Some people will rub a cold can across the area where the pain is. Others swear by heat. As previously stated, Melatonin at bedtime helps many too in the higher doses. Usually 9 to 20mg taken 1/2 hour before bed. Sleeping in a recliner with your head above your heart also helps with nocturnal hits. As stated above, Verapamil and a steroid taper (Prednisone in the States) is what is most often prescribed. The steroid will likely stop the hits initially. That gives the Verapamil a chance to kick in hopefully. Some cannot take the high doses often needed due to low blood pressure.That needs to be monitored as the dosage is increased and is easy to do at home. Most Neuros will order a scan (MRI?) of your head too. Just to rule out other stuff being wrong up there. That was pretty slick to time the second trip to the ER!! Kudus. Please keep us posted!

Hi Blues! Well, I can identify with your frustration. Almost all of my hits are nocturnal. For me, they hit 15 minutes after falling asleep and run for 2.25 hours without O2 or an abortive. If you have a recliner, you can lie back in that to sleep if you keep your head above your heart. Also there is the pile some pillows on a table and sit in a chair with your head pillowed to sleep method. Taking Melatonin at 9mg up to about 20mg at bedtime can buy people some sleep. Trying those should buy you some rest. For many, a nap will set off a hit. Maintaining a steady sleep schedule is best. I understand being tired after a hit or ten. The idea of maintaining a sleep schedule seems impossible right now. What abortives do you have? O2? Imitrex? A bit of background can help. Have you tried slamming an energy drink at the first sign of a hit? It can be a big help. Please let us know what you take for your CH and if you have had a diagnosis and scans done. It will help us help you. I can tell you for starters that you need O2 and use the proper breathing method to abort those screamers!

I've not heard of this study Bigtime. Where is it taking place?

Hi and welcome kevlar! It seems that you have done a lot of reading on the board and learned a lot. Isn't it amazing that this site is miles ahead of most doctors? Oh course it is a rather rare disorder and most physicians would go broke if they only treated Chers! Kudu's for getting started on the D3 Regimen. For some it actually stops the hits and for many it will lower the intensity and ramp up time considerably. Either way, you win. A proper O2 set up will amaze you! You really need at least 15lpm with a non-rebreather mask. With the proper breathing technique, you can kill a hit in 10 minutes or less. Have you tried an energy shot or caffeine at the first sign of an attack? They can abort one for you. Drink it down fast. at the first sign of a hit. Yes, falling barometric pressure is a common trigger. Airplanes do not maintain the same pressure that you experience down here. And falling pressure due to weather fronts can be rough too. Triptans are famous for extending cycles. The pills take too long to really help much. Nasal spray or injection are preferred. As for Topa many of us call it Dopamax. Verapamil is often the first pharma prescribed. Good luck with your appt. and I really hope that you get the O2 you so desperately need.

Jeebs, you should know that several of us went to The Bomba Shack without you too.

Hi Marty! Some use a 'bubbler' attached to their O2 for moisture. That cold, dried out feeling sucks. To make one: Take a clean jar with a lid. Punch or drill two holes in the lid that are big enough for your tubing to run thru. Fill the jar about 2/3 full of water and put the lid on it. Zip tie or tape to your tank at a convenient height. Now, you need to cut your tubing. The one from the tank is cut short because it is going into the jar and down into the water. The other half goes into the jar - but not in the water. Tape both tubes in place. Now, when you breathe, the O2 goes into the water and bubbles. The O2 that you breath is above the water and now moisturized and a bit warmer. Be sure to change the water occasionally. If you are on well water, I would suggest that you add a drop of old fashioned liquid bleach to the water to prevent algae growth. Not powdered and not scented. Prednizone: Yes, that is the way it works for most people. Below a certain amount per day, the hits come back. For some it is 20mg and others 40mg. But long term use is really bad for you. Keep some caffeine in the fridge! Grab it and start chugging on your way to the O2 or before you start it. My tank is at the other end of the house! You can also start deep breathing before you get there too. Just remember, inhale deeply and exhale with force. A crunch at the end helps. You are trying to get all the CO2 out. I find that this saves O2. Method is a major factor for the efficacy of O2.

Welcome Keyser! I have two dogs and a cat too. My cat comes with me every time I hit the O2. He lays about a about a foot away, not asking for pets or anything. Just keeps me company. He has his own house to sleep in, but always knows when I head to the office for a bit of O2. Some have dogs that are their CH partners. But, it seems that the animal chooses it. However, I don't know that you could train one to keep you company but out of the way! They seem to just know. My dogs never even get up! They are great for PTSD though.

Hi Grrl! We have several members who are 'supporters'. It is hard. You want to help so much, but you usually can't help at all. And watching your loved one suffer is awful. I am glad that you realize that you need some support to. Just so you know, we love our supporters and the supporters who show up here for their loved one.

Tom is a gem. Loves Elvis!!! Good luck on your event.

Good to know that you are all set and it works marj!! I need to check on pricing myself since I now have a script for the Demand. On to read your attachments!

Welcome Darius, I suspect that you would have more luck with your question on a site for sufferers of Fibromyalgia. However, I have heard of two patients with this disease using CBD for their pain. They used the high concentration version for relief. I understand that it can get rather expensive though. Sorry that I could not be of more help. We are mostly focused on Cluster Headaches here with some members who have Migraines. ATB