kat_92

@Batch your granddaughter is beautiful!! @CSA I’m sorry to hear about your frustrations with the ER. I’ve has my fair share of useless visits to the ER but when you’re desperate you feel like you don’t have much of a choice. I too was given fioricet. One time they gave my Vicodin AND dilauted (not sure how you spell it). And discharged me when I was on both those drugs. My mother was LIVID. This was about 6 years ago. My headaches went away for almost 3 years actually! And then they came back. Luckily I learned from my mistakes. Never set foot in an ER once during this cycle. Thanks to the awesome people on this forum I found the best info. The D3 regimen I believe has been extremely effective in managing the headaches. Also I was able to obtain an oxygen tank. My good family friends own a clinic and have one of the best primary care docs. He diagnosed me right away. He had seen it in the emergency room a few times. Prescribed me a tank!:) of course insurance didn’t cover it because why would they!? Yay insurance in America. I pay out of pocket $78 a tank. Make sure to have the proper mask and at least 12 lpm. This works for me most of the time. Take care! Kat

@spiny yes that’s definitely the way I’m trying to look at it. @Brain on fire I am religiously taking the vitamin d regimen, and I was going to begin dosing starting in January to give me a few months to be prepared. I also have my O2 script and a place to get tanks so I hope I’m good to go @jon019 glad to hear I’m not alone. I agree I think during the cycle I was just trying to get through every day I didn’t have time to be sad. Thanks for the info! Kat

hey all I’m hoping everyone is doing okay during the last few weeks I know the fall is a rough time for many of you with the cycle beginning around that time. I just wanted to report that I am 2 weeks pain free not even shaddows really. So it seems my cycle lasted from July-November. Sounds about right. Oddly enough I find myself more depressed and nervous while I am out of the cycle? Does anyone else experience this? I hope I’m not alone. I find myself dreading next summer and it sucks. Pain free wishes kat

@yme I’m sorry to hear that. I will say after purchasing the appropriate mask and getting my flow rate up to 12 lpm, it worked so much better. Do you have the most effective equipment with the tank? Kat

Hey all I just had my wisdom teeth surgery and it went great! 2 of my teeth were imacted and the doc said they just had to come out. He researched cluster headaches before hand and was able to do the surgery with no epinephrine! Just made me feel sedated and it was over in 30 min. Thanks to everyone who informed me about epinephrine via the forum. Much appreciated. Smoothie time! Kat

It sounds like classic cluster headaches from what you’re describing and I’m sure the more experienced members will answer you soon. I was prescribed Fioricet as well for “migraines” like 5 years ago. It probably won’t help you that much for this condition. I recommend you start the d3 regimen right away. Many sufferers find relief within a week to one month. It’s something you take all year round. @Batch developed it and he’s very knowledgeable on this. Put d3 into the search bar in the home page and you will find everything you need. I have found everyone on the forum to be more helpful than any doctor I’ve seen (5 neuros over the last 5 years and 1 primary care doc) pretty scary. Hope you find relief soon! You will kat

I split the vitamins up into 3 in the morning and 3 at night. Always take them with a meal. I was instantly vomiting after taking them all on an empty stomach which Wasn’t smart on my part. Good luck!

My doctor also prescribed indomethacin just to rule out Hemicrania continua; I wasn’t able to tell if it really did much for the headaches because I am also on the d3 regimen. So it was hard to tell which was doing the heavy lifting. I will say this about indomethacin, I’m not sure if I am the only one who experienced horrendous side effects. I would instantly get super dizzy and nauseous after taking it. Also the next day I would wake up with a headache so bad I’d have to cancel all of my plans. I couldn’t even move my head. Not sure which one felt worse honestly. I called my doctor and they advised me to take it right after eating (a meal not just something small) and take it with an entire bottle of water. I wish you the best of luck! Kat

The only reason I ask is because it’s been 3 days of non stop tooth pain like badddd pain and it does not correlate with pain behind my eye or anything. I think it’s my tooth because I knew they were coming in

Has anyone had their wisdom teeth affect the specific side of their face? The cycle for my attacks started early July and while my tooth/jaw pain was mild, the last 2 days I haven’t even been able to chew on the left side (my cluster side) I looked in the mirror and saw my wisdom tooth might be coming in. Wondering if this pain is related to clusters (they’re getting worse?) or my wisdom tooth. The back molar is sore to the touch. The pain is also there all day long, no flare ups with headaches. Kat

@Trent are you chronic or episodic? I’m still learning how to use the o2 this is my first real cycle

@Brain on fire I will be ordering that in the next few days. I find the non rebreather mask I was provided with super awkward to hold on my face

@Trent what is your usual abort time with this method? I know every attack is different but I am just curious. Also are you on any other preventatives that may affect your attack strength and duration? Like the vitamin d3 regimen, MM or having energy drinks prior to O2? Kat

@CHfather thanks so much for the info! @Brain on fire yes definitely some experimenting is in order. I’ll try the above technique next time I use the tank.

Wishing everyone a nice weekend so far. I had my first attempt at using the oxygen tank. The delivery guy provided me with their own regulator while I wait for mine in the mail. The one they provided only goes up to 8. As assumed the bag was not filling back quickly enough. I purchased the one from wtfarley that is 0-25. What has everyone found to be the best breathing technique that works for them? Thank you! Kat

Hey all I’m so excited to update that I FINALLY got an oxygen tank! What a mission. The delivery guy is super nice and said most of his deliveries are for people with clusters. He also gave me 4 non rebreather masks for free Hope everyone is well today Kat

Update: I found a medical o2 supply that provides the tank and refills and delivers them to the house for you. $156 deposit and 78$ any time you need a new tank. There is no monthly fee. It’s an M tank size. The guy said with a regulator delivering 15 lpm it should give you 3 hours of time. I’ll have to experiment and see if that’s true or not. What are the opinions on demand valves? It seems to me like they are totally worth it but they are on the pricy side. Thoughts? Hoping everyone has pain free days ahead. Positive news is positive news no matter how small! Kat

@Transcona gal okay I would appreciate the information! I don’t think that means you’re becomming chronic but maybe you need to up the dose you are taking? Kat

@Transcona gal yes the Praxair in my town is permanently closed so I was going to go through Airgas. Can you tell me exactly what sizes you bought, which regulators etc. also, are you chronic or episodic? Are you doing any preventatives at all? Like vit d regimen or anything. Kat

@CHfather update, lincare won’t sell an o2 tank even with a script for headaches because headaches are not a life threatening emergency. Lincare EXACT words. Just got off the phone with my doc and he said yeah that’s not uncommon so he needs to call around and find a place that accepts the script. I’m at a complete loss. It looks like Airgas for welding 02 is promissing. There is one in Miami so I’m gonna read up more on welding o2

@CHfather I haven’t spoken to them directly yet. This was Friday afternoon and I was talking with my insurance company and they said the only way they cover it is if I take a blood test which tests my red blood cells oxygen level. And they said if it’s normal they won’t cover it. Im going to call lincare this morning and tell them I want to self pay. I just was not sure if I could get a tank else where out of pocket that was medical grade. My parents are super skeptical about welding o2. I gave them the link to this site and told them to read up and learn about what I’m going through. They are still under the impression that it’s just “a bad headache”. So frustrating. Will keep you updated Kat

@CHfather yes they did fax the script; however they are under the impression that I am going through my insurance which I do not want to do. They said it can take up to weeks with the insurance. I believe it is lincare.

@spiny I think I’m going to go the welding route. I’m having the hardest time finding a Medical supply store that carries tanks in my area

I have decided to go without my insurance to obtain the tanks. It is taking too long and I am getting desperate. I am willing to either get it directly from a medical supply store with my prescription, or a welding store. I do not mind paying at this point. Is there anyone in the south Florida area that has experience obtaining tanks without insurance and can give me some places like good welding suppliers or medical supply companies that carry tanks? I have already purchaes a non rebreather mask. Abother issue, my doc prescribed 5lpm which I know won’t do much. I was so grateful that I even got a script that I didn’t fight this. If I purchase a regulator 15 lpm or 25 lpm, can I still use it with this prescription flow? I can right? I’m sure the tank will run out in like 20 minutes but it is possible? Any and all help is appreciated Kat

Alrighty, in about 2 weeks I will hit my third month of this cycle. They have ramped up in intensity a bit, my primary care doc said they usually tend to do that at the beginning and end of a cycle (can anyone attest to this via experience)? While I am waiting on the oxygen, I have been experimenting with other options. I have solely been relying on the vitamin regimen so far. My d was at 70, Batch advised me to do one extra week of the loading schedule. In the process of this now. I have found that Red Bull and very strong ginger tea work for me at getting rid of that annoying shaddow pain (so that is some good news). And I’ve been taking melatonin at night. Aside from the o2 which I know is a necessity, does anyone else have any quick go to’s. Hoping everyone is feeling okay today! Kat