M-Philly Posted December 12, 2023 Share Posted December 12, 2023 Hello! Hello! It's very nice to find a place like this. I was first diagnosed with cluster headache in 2020 when I was 32, although I have had a similar but very short attack when I was in my mid-20s, and had one-off very similar attacks in my teens. My second full cycle ever ended last October right after I recovered from COVID. After going through hell with finding a new neuro, trying to get my hands on medication, and getting short-term disability approved, I wanted to find what advocacy groups there were. I look forward to getting to know all of you. Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 12, 2023 Share Posted December 12, 2023 Welcome, M'! This overview post might give you an idea of the kinds of things that are dicussed here, including "busting" (covered at the end of the document): https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ If you are not familiar with the Vitamin D regimen, be sure to look here: https://clusterbusters.org/forums/topic/1308-d3-regimen/. In general, it is recommended that you browse around the ClusterBuster Files section for topics of significance to you. Doctors have a valuable place in treatment, and if you have found a good one that's something to be thankful for. But there is a lot that patients know that most neurologists really don't know (it is shocking, for example, how many don't prescribe oxygen, and how many overprescribe triptans), so I think you'll find good answers to any questions you might have from the great people here. 4 Quote Link to comment Share on other sites More sharing options...
jon019 Posted December 12, 2023 Share Posted December 12, 2023 ...please do share how you got short term disability....is rare 4 Quote Link to comment Share on other sites More sharing options...
FunTimes Posted December 13, 2023 Share Posted December 13, 2023 Welcome to the club.. Let us know what you are currently doing to abort your attacks and preventive measures your taking to keep your clusters away. We have people all over the world here doing all types of different things so look around and ask questions. 5 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted December 13, 2023 Share Posted December 13, 2023 Hi glad you found us , but sorry you had to , let us all know what your neuro has prescribed you and ask questions we don't have all the answers but we can help great bunch of nutters on here with answers and support 4 Quote Link to comment Share on other sites More sharing options...
M-Philly Posted December 13, 2023 Author Share Posted December 13, 2023 2 hours ago, FunTimes said: Welcome to the club.. Let us know what you are currently doing to abort your attacks and preventive measures your taking to keep your clusters away. We have people all over the world here doing all types of different things so look around and ask questions. Hello Fun Times! I wrote this up for my own sanity but I can share this. It's probably way too long, but please let me know if it helps: Quote My most recent cycle was October of this year, immediately after I recovered from COVID. I felt relatively prepared, I had some oral sumatriptan and extended release verapamil that I ask my neuro for at the beginning of every fall so I can be ready. I'm comfortable taking sumatriptan because I had only averaged 1-2 attacks per day in 2020. However, the oral sumatriptan stopped working and the verapamil didn't seem to be slowing anything down. Hiding in my office closet became the only way to work through the headaches. I could be away from any light and I could breathe and meditate through the pain. Going about my life was stressful because it felt like living with a gun to my head. Work became impossible both from the attacks themselves and the grogginess and side effects from the oral sumatriptan. I was beginning to panic because I was taking too much time off work and my (now previous) neuro couldn't see me until November. So I took a risk, and took two full weeks off of work in the hopes I could get it approved as short-term disability and tried to find a new neurologist. I was fully aware that trying to get a new patient appointment with a specialist was a fool's errand, but I had so many bad experiences with my Primary that it seemed like my only option. In what felt like a miracle, I was looking at neurologists out-of-state by where my friends lived on Zocdoc, when I saw a doctor supposedly near me that had an tele-med appointment THAT DAY. I frantically booked it, and crossed my fingers that it wouldn't be cancelled. And it wasn't. His name is Dr. Jacob Hascalovici and he didn't know a whole lot about cluster headache but he put in the time to look it up and figure it out. Where we landed for my new treatment was: Injectable sumatriptan instead of oral My doctor seemed worried about suggesting an autoinjector but I don't have a problem with needles and I said to him "If you told me I needed to stab myself with a medicated kitchen knife, I'd do it. If it meant making the headache stop." An increased dose of verapamil ER from 120mg once a day to twice a day - to be weaned off of at the end of the cycle And Emgality, one shot a month for three months He also prescribed nasal lidocaine, but honestly that only proved to irritate my already sensitive sinuses more. I don't recommend it. He also mentioned oxygen but for some reason steered away from it. I'm going to bring it up with him again. What blew me away about how bad my previous neuro was that the verapamil had me on was HALF the recommended dose of verapamil for cluster headaches, and not ONCE did he ever mention oxygen. I understand that it is a rare disease and even most neurologists are unfamiliar with it but it took my new neuro less than 15 minutes of quick research that he did DURING my telemed call with him. The injectable sumatriptan worked SO GREAT. I could inject myself and three to five minutes later the pain was GONE. Thankfully, I average only 1-3 headaches a day, so sumatriptan is still an option for me. AND the side effects that I got from the oral medication were minimal or gone entirely. But the injectable medicine had the following complications: I was only able to get two doses per refill I had to refill EVERYDAY for a week at $10 per Each refill came with a new auto injector, which is incredibly wasteful The state I live in doesn't allow sumatriptan to be delivered The first time I tried going and getting it myself but the noise and the lights and the exertion caused me to get a headache I had to use one of my doses to inject in a Starbucks bathroom so I could make it home safely Eventually I was able to get some friends of mine to pick it up for me My insurance only covers a limited refills a year, so if my cycle had continued, I'd have been screwed But after about a week of the increased verapamil and Emgality, the cycle finally ended. The next task was getting the short-term disability approved. At that point, HR was warning that if I didn’t get the disability approved quickly, they were going to dock my pay. Thankfully it could be applied retroactively. I was terrified because my HR rep told me that it usually required 15 days notice. But all it required was to fill out a claim online, get your doctor to fill out some paperwork, and send it in. I had some hiccups because I thought the doctor sent the paperwork back, but I needed to sign it as well. Many of you probably already know this but on the off-chance this information is helpful I’m happy to share. If you ever plan on applying for short-term disability, discuss with your doctor ahead of time about filling out the paperwork and what that requires. Which includes what the doctor charges for paperwork fees (Dr. Jacob charges $50), and what days you’re taking off of work, so they know what to put on the paper work as their “recommendation”. That especially important because you never really know when a cycle is going to end, so staying in regular contact with them about it is critical. I’m going to schedule an appointment with my neuro sometime next year in the summer to make a game plan for the fall. I want to discuss using oxygen as my main treatment for the headaches and keep the injectable sumatriptan for a backup. I also would like to see if I could only use Emgality as the preventative instead of in combination with the verapamil because I’m not a big fan of verapamil’s side effects and the fact that I have to wean off of it. If you’ve made it this far, thank you for reading. I look forward to getting more involved in this community. I want to help make policy changes around cluster headaches and help get more research done. Including the Psilocybin research, but also research around getting sumatriptan prescribing guidelines specific for cluster headache. I know there are tons of side effects and safety hazards but I also read that those might be based off of lack of research. So it would be nice if there could be more to really make that conclusive. But please take that with a huge grain of salt, I read that one the internet somewhere. And I’m biased because the injectable worked so well for me. Quote Link to comment Share on other sites More sharing options...
M-Philly Posted December 13, 2023 Author Share Posted December 13, 2023 21 hours ago, jon019 said: ...please do share how you got short term disability....is rare My employer provides short-term disability insurance through a company called The Hartford. I haven't heard of a lot of employers offering this. I work for a large corporate ad agency, that isn't what I want to be doing and I don't always feel great about working there, but I get benefits like that. When I had my first cycle in 2020 I was lucky enough to work for a small agency that was very understanding. I kept them in the loop while I was getting diagnosed. Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 13, 2023 Share Posted December 13, 2023 Yes, that's long (which is fine), and I just scanned it and jumped at a few things. 1. You never want to be using that much Imitrex. It is virtually certain to make attacks worse and extend your cycle. Do this!!! https://clusterbusters.org/forums/topic/2446-extending-imitrex/ 2. You must get oxygen!! It is the lifesaver, eliminating or significantly reducing the need for triptans. Insist with your doctor and if that doesn't work, use welding oxygen (all discussed extensively in that file I linked you to above, and the file about welding O2 in the CB Files section). 3. Your verapamil dosage is still quite low. It has to be ramped up slowly to watch out for effects on the heart. But the vitamin D3 regimen is much, much better for you than verapamil. You should just start it now, and you won't need any verapamil next time. Also linked to in my message above. If you take the D3 regimen year-round, it will be good for you and also might even prevent cycles from starting. (Also -- and I hope this is moot the next time it matters, you want immediate release verap, not extended release. I don't know why but it just works better.) (Some people get into the 900s and even over 1000 in terms of verapamil mgs/day. Nobody likes the side effects of that.) 4. it would be nice if Emgality really worked for you. Results are decidedly mixed. 5. You might read up more on busting, if it's something you would consider doing. 17 minutes ago, M-Philly said: it took my new neuro less than 15 minutes of quick research that he did DURING my telemed call with him Yes, it is astonishing how few neuros bother to do even this. You got lucky in the short run, but dosing yourself with Trex is not a workable long-term strategy. Your doc probably avoided oxygen because he has no patients who use high-flow O2, and he probably doesn't even know how to write a prescription for it. You can help him with those things from ther info here. The standard prescription reads something like "Oxygen therapy for cluster headache: 15-20 minutes at 12-15 liters per minute with non-rebreather mask." 20 minutes ago, M-Philly said: research around getting sumatriptan prescribing guidelines specific for cluster headache. I know there are tons of side effects and safety hazards but I also read that those might be based off of lack of research. So it would be nice if there could be more to really make that conclusive. But please take that with a huge grain of salt, I read that one the internet somewhere. And I’m biased because the injectable worked so well for me. There's plenty of research on the effects of triptan overuse. A 6mg injector makes overuse almost a given. There are injectors with lower mgs (Zembrance, for example, has 3 mg), but the clinical trials for CH were done with 6, and so prescribing anything else is "off label." 7 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted December 13, 2023 Share Posted December 13, 2023 What. @CHfather. Said! @M-Philly you're another now-lucky soul to have received this analysis with suggestions from @CHfather, who I have considered a preeminent expert on the most effective ways to combat CH for many many years now. I would treat his response as gospel, and as a side note, after just one false start (failing to catch the attack at onset), I have personally found the splitting of 6 mg imitrex injections down to 2mg doses to still be very effective for aborting attacks. 3 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted December 14, 2023 Share Posted December 14, 2023 Hi @M-Philly, Sorry I'm late to the welcoming party. So glad you found this place! Sorry you needed to. Either way I'm so happy that you've already receive some seriously great feedback! Everyone on here is pretty amazingly great and understands what having CH means. Looking forward to seeing you around and welcome to the cool kids club! 4 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted December 14, 2023 Share Posted December 14, 2023 Everything @CHfatherhas said I double down on , If your struggling to get samatriptain private message me , I may be able to help , but you really need to be careful with them as over use will prolong cycle 3 Quote Link to comment Share on other sites More sharing options...
FunTimes Posted December 14, 2023 Share Posted December 14, 2023 Going off your screen name and the Dr your seeing now I am guessing your in the NE area. If you are in the Philly area I do have a good DR I would recommend at Jefferson. He is very familiar with this site and is willing to work with you on how to best treat your situation. Get that oxygen setup now so you are ready for the next round to land if and when it does. D# and everything else CHfather sent to you will get you started and in a good place. Emgality has helped some but from what i remember it was 3x the dose of migraine users, I had 3 100mg auto-injectors that I had to take once a month. I gave it 3 or 4 months and didn't help me much. 4 Quote Link to comment Share on other sites More sharing options...
M-Philly Posted January 16 Author Share Posted January 16 On 12/14/2023 at 11:49 AM, FunTimes said: Going off your screen name and the Dr your seeing now I am guessing your in the NE area. If you are in the Philly area I do have a good DR I would recommend at Jefferson. He is very familiar with this site and is willing to work with you on how to best treat your situation. Get that oxygen setup now so you are ready for the next round to land if and when it does. D# and everything else CHfather sent to you will get you started and in a good place. Emgality has helped some but from what i remember it was 3x the dose of migraine users, I had 3 100mg auto-injectors that I had to take once a month. I gave it 3 or 4 months and didn't help me much. Hi the doctor recommendation at Jefferson would be great. I tried getting an appointment with their headache specialists but they haven't gotten back to me because I'm not having "12 or more headaches a month". I don't think the people who do the scheduling are informed about CH. I know William Young is involved with clusterbusters from the list, I'm just trying to figure out how to get an appointment scheduled. Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted January 16 Share Posted January 16 1 hour ago, M-Philly said: haven't gotten back to me because I'm not having "12 or more headaches a month". Sounds like they are treating you as if you have migraine If you have to say that you have 15 a month to get an appointment then I feel like that would be a justified fib! 2 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted January 16 Share Posted January 16 @M-Phillylie through the back of your teeth buddy , if it gets you what you need 2 2 Quote Link to comment Share on other sites More sharing options...
FunTimes Posted January 18 Share Posted January 18 M-Philly Let me see if I can get in contact with Dr Young and get you a number to call for an appointment. I know his scheduling is booked out a few months but it does not hurt to give it a try to get in to see him or someone from his team. 1 Quote Link to comment Share on other sites More sharing options...
M-Philly Posted February 5 Author Share Posted February 5 I got an appointment with Dr. Marmura at the Jefferson Headache Center!! 7 Quote Link to comment Share on other sites More sharing options...
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