kat_92

I should clarify I ate about 10 of them in one day hahaha

Hey everyone! I just bought these at Trader Joe’s the other day and they really helped my shadows yesterday along with some ginger tea. I had coffee against my better judgement and had a very strong shadow for about 6-8 hours! This helped a lot kat

Typical rule is to wait 5 days until any other medication is out of your system

@ThatHurtsMyHead I agree! Sounds like a great idea. I have found that neurologists are very medication forward people. I’m sure they get some sort of commission from pharmaceutical companies for pushing these meds. If you had the opportunity to prescribe an oxygen tank which is known to be the safest and best abortive, why wouldn’t you? Kat

Hey thanks @Bryan ! Yeah I have looked at the post. I was able to get my primary care doctor to send a script for me kat

Hey everyone, i cannot get my doctor to refill my oxygen tank. I have been fighting about it since July. It’s ridiculous. I guess this post is a bit of a reach, but are there any folks on this group from Miami and have a neurologist that willingly prescribes tanks for clusters? As a last resort I will need to go the welding route. I am hoping to avoid that. Thank you!! Kat

@Bryan yeah that’s awesome!!! Long live the D3 regimen

@Cluster Dave Hmm that’s odd. Maybe the MM gave you a month and a half reprieve. Any luck with mm this time around? I believe I am chronic and the mm are keeping the hits or shadows very manageable for me which is good news!!

@Cluster Dave damn I’m sorry to hear that. Anything that could have possibly made them so tough for you this time around? The d3 does make a difference. But you need to be consistent with it. Any progress is good progress kat

Can you get the d3-50 on Amazon? That is where I get mine

hey @Cluster Dave I am no expert in the d3 regimen, but I have been on it for over a year now. I can say I immediately began the loading dose and following the regimen before I got my bloodwork done. I did make an appointment to get bloodwork done soon after though. It is very important. You must do the loading dose with the rest of the regimen. Other vitamins are essential in vitamin d actually absorbing in the body. Chances are, unless you are outside pretty frequently your D levels are lower than what is needed to get relief for clusters. kat

Hey welcome to the forum im sorry you have to be here. It’s great that your sister has support with her. It’s sometimes just as hard for loved ones seeing their loved ones suffer. My boyfriend has said he wished he could take these from me. It’s mentally and physically draining. The good news is..you found cluster busters!! The help that I have gotten from the people on this site is something I can’t even put into words. I have been to countless neurologists and tried every medication under the sun. Cluster headaches are much harder at the beginning when you first get a diagnosis and are dealing with them. You are confused and frustrated that this is even happening to you. Especially when you read online that mostly men suffer! I think by now more women are getting this as well. At least from what I’ve seen. Once you learn how to live with them, it gets somewhat easier. I recommend starting with the d3 regimen. That’s the link directly from the cluster busters files site. I’ve been on it for a year. You need to follow the instructions very carefully. This is something you can get started on right away. I highly recommend it. You can also speak to your doctor about trying verapamil immediate release pills. It is a calcium channel blocker that helps people prevent CH cycles or lessen the intensity. The best abortive is going to be an oxygen tank. There is tons of info on here about the tanks, sizes, etc. I would look into that immediately. Energy drinks can be effective for shadows or even lessen the intensity of the hits you get, if taken right away. I drink ginger tea a lot. It helps with those annoying shadow headaches that linger all day. Lastly there is busting, if that is an option for your sister. You can read up on that as well on the “new users read here” banner. Everyone has been in your sisters position at some point, she isn’t alone. It’s very important that she understands that. It really helps with mentally coping. I am a cluster newbie myself. I have so much respect for everyone on this site. Best of luck, keep us posted. Kat

@EggMan thanks for posting! I’m glad it’s working for you. When it comes to side effects, anything seems better than clusters. I am still unsure if I am episodic or chronic, so I don’t want to take the emgality and make things worse for myself. Sounds like you have a good plan in place. I’m happy there is potential for relief from episodic clusters with this medication. Onwards and upwards kat

I also need to add that you should get a blood test done to check all of your vitamin levels. Your general care practitioner can order this for you. There are also some websites where you can pay for the test and go get the blood work done at a lab. They will email ur results

Hey @its okay welcome to the forum I was on relpax for my “‘migraines” for a while. I put migraines in quotes because I don’t gave migraines I have CH. And I’ve been to 6 neurologists so you can imagine my frustration. I even had a neurologist tell me to get a massage! For a $200 co pay I was told to get a massage. Gotta love it. The only thing that has helped me manage these headaches is this forum. I’d be lost without it. No matter how much research and googling my loved ones do, they will never fully understand. This is a safe space, post frequently and any time you have a question. I am still considered a newbie with Ch but I will help if I can. I would immediately start on the d3 regimen if I were you. It’s cheap (er) than most meds. And you can find most of the supplements in the grocery store. I would check amazon for the bio tech water soluble D3-50. There is a document on the forum somewhere with all the details. Possibly ask ur doctor about starting verapamil. Some people have success with that. Also, it is important with the vitamin regimen to drink tons of water! Keep us posted kat