Leaderboard

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!

@M-Phillylie through the back of your teeth buddy , if it gets you what you need

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.

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

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!

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.

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. 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." 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."

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

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.

...please do share how you got short term disability....is rare

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.