Nilesdevinney Posted June 15, 2016 Share Posted June 15, 2016 First off, I'm new here. Extremely happy to find this page. I've been having CH for about 4 years now. Ive been doing a lot more of my own research on them lately than I ever have before. How long does everyone's usually last when they get one? I've read that most people only get them for 30-90 minutes. Sometimes I get them for up to 4 hours. Yesterday I had one for 5 hours and then had a lingering dull pain for the rest of the day until I went to bed. I've had this happen a couple times before. Is this something that has happened to others? Does anyone get CH and migraines? I've been drinking monster energy drinks when I feel a CH coming on because I noticed it sometimes helps. When I found this site a couple days ago I read a lot of people use 5 hour energy. I drank one of those yesterday when I felt my headache coming on and it did nothing. I'm wondering if it's because I got a migraine and not a CH? Thanks for any input! Niles Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted June 15, 2016 Share Posted June 15, 2016 G'mornin and welcome to the community Niles....sorry you had the need to join us! I don't personally use energy drinks or shots so can't comment on that question but I'm sure someone will be along to address that for you. I've been dancin with the Beast for 32 years now....in the early days,before trex and O2, 30 to 90 minutes per hit was the norm for me.....fortunately, I've not experienced a 4 or 5 hour dance! So, how are you treating your ch? If you don't already have oxygen, that should be a priority....number one abortive for the majority of ch'ers! Look into Batchs vitamin D regimen as it helps a lot of folks! Dallas Denny Quote Link to comment Share on other sites More sharing options...
Nilesdevinney Posted June 15, 2016 Author Share Posted June 15, 2016 I'm currently out of my meds but am going to the doctor on Thursday. I take verapamil daily and zomig nasal spray as an abortive. They both seem to work for me pretty well. But I'm definitely going to try and talk to my doctor about the O2 option. Especially after reading about how well it's worked for other people that suffer from CH! Quote Link to comment Share on other sites More sharing options...
CHfather Posted June 15, 2016 Share Posted June 15, 2016 [Wrote this before your post above. Some is still relevant.] Niles, I can't really answer many of your questions. 4-5 hours is an unusually long CH attack -- but I can't say it's unheard of. SEE BELOW. Yes, there are people who have some symptoms of CH and some of migraine, or who have both. The lingering dull pain is pretty common (referred to often as "shadows"). Usually it's the amount of caffeine in an energy drink or shot that makes some more or less effective. 5-Hour Energy has more caffeine than RedBull, and the shots are easier to get down. There are many Monster drinks -- some are loaded with caffeine, such as Monster Hitman Sniper, which has 240mg of caffeine in contrast to something like 100mg in a 5-Hour. You could take a look and see how many calories your Monster has. BUT MAINLY, you need other tools. Oxygen, sumatriptan, verapamil, BUSTING, D3 . . . . I don't think you'd have 4 or 5 hour attacks if you had a better arsenal, pharmaceutical and non-pharmaceutical. Read around, particularly in the ClusterBuster Files section of this board. Quote Link to comment Share on other sites More sharing options...
mit12 Posted June 15, 2016 Share Posted June 15, 2016 Niles, What you are describing seems alot like my headaches. For 15 years my doc thought I had migraines because of my symptoms. He figured out that I have migraines with CH events. The migraine hits slow and builds up over a few hours and then the CH events start. I do get CH on their own without migraines also. Like you the CH events can be long my longest was 5 hours. Most of the time they are between 1 1/2 to 2 hours long. You have came to the right spot here with Clusterbusters, these people know what they are talking about and are great people. Hang in there. Quote Link to comment Share on other sites More sharing options...
spiny Posted June 16, 2016 Share Posted June 16, 2016 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 Quote Link to comment Share on other sites More sharing options...
Nilesdevinney Posted June 16, 2016 Author Share Posted June 16, 2016 I will definitely have to try the ginger trick! The dull lingering pain is super annoying but much better than the actual headache I suppose. I cut hair for a living so if I'm cutting hair with the dull lingering pain it just takes away from my concentration. I was seeing a neurologist a couple of years ago but since then I have moved and haven't seen another one since. My neurologist before diagnosed me with CH. I do get the runny nose and my eye waters on whatever side the headache is on. It switches back and forth. 9 times out of 10 the headache is out the right side of my head but sometimes it switches to the left. When I get the headache I usually try to lay down but sometimes I just end up rolling around in bed and can't lay still. Once I feel it coming on its usually full force within a couple of minutes. Typically last from about 30 mins - 2 hours but on occasion longer. I'm going to see a doctor today so I'm looking forward to getting my meds back and trying to get him to prescribe me O2! Wish me luck. How much do oxygen tanks typically cost through a doctor? Thanks again for all the input guys! Niles Quote Link to comment Share on other sites More sharing options...
CHfather Posted June 16, 2016 Share Posted June 16, 2016 You might want to consider printing out this major journal article about oxygen and bringing it with you. http://jama.ama-assn.org/content/302/22/2451.full I can't answer your $ question about O2, but insurance should cover most of the cost of your oxygen, unless you're on Medicare or Medicaid, which do not cover oxygen. I think maybe the VA system also refuses to cover it -- and sometimes people have to fight with their insurance companies to get reimbursement for O2, even if it is covered. Quote Link to comment Share on other sites More sharing options...
JeffnTx Posted June 16, 2016 Share Posted June 16, 2016 Mine started when I was about 12. Through my 20's they lasted about 45 min typically.I had no real treatment then. I've taken Verapamil for the past 18 years, which seems to let me skip some clusters and when I do get them they are not as painful as they where back then. They seem to last much longer now. Sometimes the intense pain for 3-4 hours. My dad had what where dx'd as Cluster migraines. One sided headaches with definite clusters, but his could last for days. Imitrex worked well for him Quote Link to comment Share on other sites More sharing options...
Nilesdevinney Posted June 16, 2016 Author Share Posted June 16, 2016 So I went to the doctors. Got my zomig and verapamil refilled. He also prescribed me celexa to take daily, which is an anti depressant. Has anyone ever been prescribed this for CH? I'm probably not going to take it. As far as the O2 goes he referred me to a neurologist to talk to about that. So hopefully that gets me somewhere. Quote Link to comment Share on other sites More sharing options...
CHfather Posted June 17, 2016 Share Posted June 17, 2016 SSRI antidepressants have very mixed history. Some people say they help, many say they make things worse, some say they seem to make things better. Here's a thread that contains them all (you might have to register to see it). http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=sep2003;action=display;num=1062963166 That's a good site for info about CH and meds. Quote Link to comment Share on other sites More sharing options...
mit12 Posted June 17, 2016 Share Posted June 17, 2016 Niles, When your headache switches sides do the end? Mine always start on the right side and it switches to the left side for one day of real long hits 3 to 5 hour long with very little time between hits and the cycle is finished. Some times they are gon for a couple of weeks some tines a few days. Quote Link to comment Share on other sites More sharing options...
Nilesdevinney Posted June 17, 2016 Author Share Posted June 17, 2016 Mit, that actually seems to be the case because I had one on Tuesday that was on the opposite side and really bad and I haven't had one since. Fingers crossed! 1 Quote Link to comment Share on other sites More sharing options...
spiny Posted June 17, 2016 Share Posted June 17, 2016 Niles that is great news!!!! Quote Link to comment Share on other sites More sharing options...
PainInTheEye Posted June 23, 2016 Share Posted June 23, 2016 I have both, and the CH attacks also last much longer than average. Maybe there is a correlation. Quote Link to comment Share on other sites More sharing options...
mit12 Posted June 23, 2016 Share Posted June 23, 2016 PainInTheEye Do you get migraines with cluster events or do you get them separately? I have found that when I am struck with clusters alone my hits are 1 1/2 hour hits with about 20 to 30 minutes between hits. When I have migraine with cluster events the hits are longer with very little gap between events. Quote Link to comment Share on other sites More sharing options...
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