Gbaby Posted November 2, 2016 Share Posted November 2, 2016 Hey there, I'm Gabby and 24 years old. And I was just diagnosed with cluster headaches about two weeks ago. And this is my very first cycle ever. It started in August and I'm still going. I think I'm near the end hopefully. Anyway I usually get 3-4 headaches a day at very high intensity and lasting for hours each. It was so bad that I just took a leave of absence from work. Two weeks ago I saw a neurologist finally and she put me on verapamil 80mg three times a day and I did prednisone taper. It was a life saver. I was headache free for a whole week almost... Until I took that las pill of prednisone. Now I'm still taking the verapamil but I get headaches now like twice a day. However it's not as intense. I'm just yearning to take he prednisone again bc it took away all the headaches although I know it's not healthy to be on it for so long. I also tried the d3 regimen but I fell off bc I was getting relief from the prednisone. Any suggestions? I go back to the neurologist in a few weeks. Sighhhh Oh yeah I was given a nasal spray called onzetra. As an abortive method but I haven't used it yet out of fear of it making the headache worse. That happened to me when I took imitrex. Although it was the pills and not the injection. Has anyone here used the nasal spray?? Quote Link to comment Share on other sites More sharing options...
jon019 Posted November 2, 2016 Share Posted November 2, 2016 Hi Gabby...welcome.... "Typical" is...prednisone taper while starting a verapamil preventive. Not at all uncommon for hits to return after the end of pred taper (I had luck once with prednisolone IV then taper (stronger version of pred). BUT...further pred dosing unwise due to potential AWFUL side effects with extended use.... I'd go for an upping of the verapamil dosing.....as 480 mg/dy is the sweet spot for many clusterheads.....and some go even higher... (I used 960-1040/dy when in high cycle). Wise to do an ECG before and during upping of dosage to check for potential heart rhythm anomalies. Check on the version you are taking... SR Verapamil is sustained release...many...not all report immediate release better. Try to time dosages to just prior to expected hit times.... Never heard of onzetra...perhaps others can comment. I had EXCELLENT results from 5 mg Zomig nasal spray...99% effective for breakthrough hits if oxygen and energy drinks did not abort... Best Jon 2 Quote Link to comment Share on other sites More sharing options...
Gbaby Posted November 2, 2016 Author Share Posted November 2, 2016 Hi Gabby...welcome.... "Typical" is...prednisone taper while starting a verapamil preventive. Not at all uncommon for hits to return after the end of pred taper (I had luck once with prednisolone IV then taper (stronger version of pred). BUT...further pred dosing unwise due to potential AWFUL side effects with extended use.... I'd go for an upping of the verapamil dosing.....as 480 mg/dy is the sweet spot for many clusterheads.....and some go even higher... (I used 960-1040/dy when in high cycle). Wise to do an ECG before and during upping of dosage to check for potential heart rhythm anomalies. Check on the version you are taking... SR Verapamil is sustained release...many...not all report immediate release better. Try to time dosages to just prior to expected hit times.... Never heard of onzetra...perhaps others can comment. I had EXCELLENT results from 5 mg Zomig nasal spray...99% effective for breakthrough hits if oxygen and energy drinks did not abort... Best Jon Thank youuuuu. I will definitely consider upping the dosage of verapamil. Quote Link to comment Share on other sites More sharing options...
CHfather Posted November 2, 2016 Share Posted November 2, 2016 Gbaby, I am so sorry you have to be here -- but very glad that you have found us! I've been here for six years and I sure get tired of saying YOU NEED OXYGEN. But YOU NEED OXYGEN. It's a fast, safe abortive that makes everything more manageable. https://clusterbusters.org/oxygen-information/ It's hard for me to imagine sumatriptan pills making attacks worse. Usually, they just don't do much of anything. So I would suggest, with some hesitation, that you ought to try the Onzetra. As you have probably seen, CH attacks are variable enough in intensity that it's pretty hard to attribute the nature of one attack to any particular thing. Start the D3 regimen again. It's track record is very strong. Be sure you take the calcium 8 hours apart from when you take verapamil. 240mg of verap is a relatively low dose. Makes perfect sense for starting out and assessing the effects (on your CH and on your heart health, which I would assume the neurologist is monitoring), but many people (most, I think, but I can't say that for certain) find that they need a higher dose for full effectiveness, sometimes considerably higher. Yeah, you really shouldn't do the prednisone again if you can avoid it. Some other thoughts: An energy shot, such as 5-Hour Energy, drunk at the first sign of an attack, can reduce the severity of the attack and even sometimes abort it. Some people like the icy cold. Strong cup of coffee might help you. Many people find that melatonin at night, starting at about 9mg, reduces nighttime attacks. You might check for triggers and be sure you don't have any of them. 24-year-olds can find themselves taking in a lot of MSG, for example. https://clusterbusters.org/forums/topic/4568-triggers/ Keep busting in mind as an option. You can read about it in the numbered files in the ClusterBuster Files section. Quote Link to comment Share on other sites More sharing options...
Gbaby Posted November 2, 2016 Author Share Posted November 2, 2016 I definitely want to try the oxygen. However, I went to the ER one day bc the pain was soooo intense and I asked for the oxygen tank. I was on it for twenty min and it didn't work my mom thinks it's because it wasn't enough. Apparently the nurse gave me one 12 ml. But oxygen seems to be th thing to do. Hopefully I get a prescription for it. Quote Link to comment Share on other sites More sharing options...
Gbaby Posted November 2, 2016 Author Share Posted November 2, 2016 Gbaby, I am so sorry you have to be here -- but very glad that you have found us! I've been here for six years and I sure get tired of saying YOU NEED OXYGEN. But YOU NEED OXYGEN. It's a fast, safe abortive that makes everything more manageable. https://clusterbusters.org/oxygen-information/ It's hard for me to imagine sumatriptan pills making attacks worse. Usually, they just don't do much of anything. So I would suggest, with some hesitation, that you ought to try the Onzetra. As you have probably seen, CH attacks are variable enough in intensity that it's pretty hard to attribute the nature of one attack to any particular thing. Start the D3 regimen again. It's track record is very strong. Be sure you take the calcium 8 hours apart from when you take verapamil. 240mg of verap is a relatively low dose. Makes perfect sense for starting out and assessing the effects (on your CH and on your heart health, which I would assume the neurologist is monitoring), but many people (most, I think, but I can't say that for certain) find that they need a higher dose for full effectiveness, sometimes considerably higher. Yeah, you really shouldn't do the prednisone again if you can avoid it. Some other thoughts: An energy shot, such as 5-Hour Energy, drunk at the first sign of an attack, can reduce the severity of the attack and even sometimes abort it. Some people like the icy cold. Strong cup of coffee might help you. Many people find that melatonin at night, starting at about 9mg, reduces nighttime attacks. You might check for triggers and be sure you don't have any of them. 24-year-olds can find themselves taking in a lot of MSG, for example. https://clusterbusters.org/forums/topic/4568-triggers/ Keep busting in mind as an option. You can read about it in the numbered files in the ClusterBuster Files section. You're amazing. I'm going to take in everything you suggested. Thank you so much. I just want my life backkkk lol Quote Link to comment Share on other sites More sharing options...
CHfather Posted November 2, 2016 Share Posted November 2, 2016 I definitely want to try the oxygen. However, I went to the ER one day bc the pain was soooo intense and I asked for the oxygen tank. I was on it for twenty min and it didn't work my mom thinks it's because it wasn't enough. Apparently the nurse gave me one 12 ml. But oxygen seems to be th thing to do. Hopefully I get a prescription for it. You mean 12 lpm, I think -- 12 liters per minute. That is a pretty low flow, and you might have also had the wrong kind of mask and maybe a less-than-fully-effective breathing technique, and by the time you've made it to the ER and been seen, the attack can be too advanced for oxygen to really help. We are consistently finding that the right system leads to success for more than 90% of people. (Of course, you are imagining now that you are in the <10%. CH does that to you. But you probably aren't.) Any competent neurologist should prescribe O2 first thing. But they don't and they don't and they don't. Either they don't know about it and haven't bothered to look up CH treatments (so they are, like your doctor, essentially treating you as a migraine patient), or they see that O2 is the #1 recommended CH prescription, but they are afraid to order it because none of their other patients are using O2 and they don't feel confident, or, to be honest, they have no idea how to prescribe it -- what to write on the prescription. It is so incredibly frustrating -- and cruel -- to have these things be barriers. Quote Link to comment Share on other sites More sharing options...
Pebblesthecorgi Posted November 2, 2016 Share Posted November 2, 2016 Good advise has been provided but I will kick in my 2 cents. First proper diagnosis is essential and there are several types of severe headaches which have some subtle differences. Personally I believe if you don't get some abortive relief from properly administered oxygen the diagnosis should be questioned. For instance some headaches in this class respond to indomethacin (a strong non steroidal anti inflammatory in the same family as motrin) but not so well to oxygen. Of course there are exceptions to every rule but assuring the proper diagnosis is essnteial to long term treatment pathways. It sounds like you have a good doc to work with but remember this is your condition (and a rare one at that) and your life so it is good you are seeking credible advice and experience. Don't be too leary of steroids because they do have a role when used properly especially when trying to stop a bad cycle. They do have side effects but under knowledgeable care they can be a life saver. If you are young and female its particularly important to guard against bone loss. The advice above is good and you should consider the options. This site is replete with great suggestions and you should try them systematically until you find a combination that is effective. The most common reason treatments fail is inadequate doses, too short a duration of a regimen and using treatments that may work against each other. Keep a journal of what you are doing including dose and duration. There are a few apps that can help with this is app savvy. Be prepared when you go to the doctor with a list of what you have been doing, how well it works and what you would like to try next. Be in charge of your own care and so long as it has a legitimate rationale you will find a doc who will shepard you through this challenge. Stay positive and strong Quote Link to comment Share on other sites More sharing options...
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