kat_92

holy crap! I just used oxygen for the first time (correctly) to abort an attack. At 20 lpm, for about 6 min, 10 lpm to follow slowly. Wow. Now, my tank only goes up to 5 lpm unfortunately, so I can probably not get many aborts per tank. I am having serious anxiety about this. I’m hoping my supplier Can give me more than one tank at a time. I’m calling tomorrow to ask. Just wanted to share some positivity. Kat

Great article. Thanks for posting

@EggMan is busting an option for you? Seems to be the only preventative worth trying other than the d3 regimen. High doses of verapamil seem unsettling long term. Kat

I don’t take any I normally take the d3-50 water soluble once per week. This is throughout the year. But right now, I started the loading dose again and it’s giving me so much relief, but I can’t take that every day. I have an appointment with my general care doc to get bloodwork and such in a few weeks Kat

@spiny thanks for the encouraging words. So experiment time, I did NOT take the d3-50 today and boom. I’ve had heavy HEAVY shadows all day...now my only concern is that health wise, you cannot be on that many mg of d3 every single day. So I am not sure what to do. Seems I only get relief if I take one of them every day. Also I met with my neurologist today and he gave me 2 samples of emgality. I think I will steer clear of them for now. I have not read promising reviews from cluster heads. It’s great it works so well for migraines though. Ugh wish me luck today stinks

Nice aborts set up. I find that drinking that much water actually helps me lessen intensity of the pain. I can’t really answer the other questions. Try to take the verapamil at the same time every day. Also, it needs to be taken 8 hours apart from the d3 multivitamin. There is calcium in that. They will block each other

@Rod H hey thanks for the words of encouragement. Confirming a chronic diagnosis has been a depressing pill to swallow. My next step is immediate release verapamil, if not I’ll bust with MM. I have a schedule all set up. I actually began the loading dose 3 days ago of the d3 regimen because I figured what the heck. Maybe something got out of wack. And low and behold, I’ve had only one mild attack last night and only shaddows today

I can’t answer your questions on the d3 regime, Batch might be able to answer some questions you have in that regard. Was the tank possibly near empty? A few veterans on here have mentioned that if the tank is running low the effectiveness isn’t as strong? That’s all I have for now :/ just wanted to welcome you to the forum! Kat

@Phantom99 im so hesitant when they say “it helps with migraines and possibly clusters too”. Clusters behave so differently and I’m always scared any disturbance from an unknown medication will make it worse. I don’t know. I would pass on it kat

@dehabel steroids are only a temporary fix for me. I have heard mixed things about emgality for clusters. More negative actually so I wouldn’t want to try it. Also, it doesn’t get covered by my insurance. I don’t want to pay a lot of money for something that might make it worse. My next step is busting with MM. thanks for reaching out Kat

I’m sad to report that I had episodes from 4 pm yesterday til about 3 am. All lasting about 1-2 hours each. I am at my wits end. I feel like nothing is working. I am desperate. I feel like I should be successful with the D3 regimen I’ve been on it non stop for 1 year. I’ve even added Benadryl to the mix due to seasonal allergies. I have an appointment with my neurologist on Wednesday but I don’t even know what I’m gonna ask him for. Immediate release verapamil I guess :/ I am still too scared to bust. I have depression and I am just scared it will go poorly. Almost because I feel like MM is my last option, if it doesn’t work I will feel so helpless. Just wanting to vent a bit. Stay safe today Kat

Good afternoon! with my headaches ramping up, I have been using my O2 tank more often. I have the cluster o2 mask , and a regulator that goes up to 25 lpm. I want to maximize my o2 flow, now only for getting rid of the pain, but I pay $78 out of pocket per tank; so I need to conserve as best I can. Does anyone find breathing it through the nose more affective than through the mouth? What about deep long breaths vs short fast breaths. I do it sitting up at the end of my couch. I appreciate any advice. I guess the summer months are my time for hell :/ pain free wishes Kat

@AndiD i am curious are you on verapamil immediate release or verapamil ER? I am on verapamil ER 320 mg a day and my headaches are ramping up. I called for an emergency appointment with my neurologist on the 8th to see if they can switch me to immediate release. I’ve heard it works better. I’ve been on it for a month already so it should be working well;/ Kat

@spiny wow that’s quite the history? Even with daily d3 regimen your hits are that strong and frequent during a cycle? That stinks. Yes I had my d levels tested a year ago and I am due for another blood test in 2 months. My d levels were quite low. I don’t remember the numbers. My doc gave me the green light for the regimen.

I wanted to pass along my ginger shot recipe that may help people with any shaddows. I’ve been taking one every day to help with over all health during this time anyway. 2 tablespoons grated ginger 1 teaspoon honey or agave 2 tablespoons apple cider vinegar 3 table spoons of water blend it up! It should burn but it’s a goooood burn. I love ginger lol Kat

@spiny from what you have said you started out chronic and eventually went episodic? We’re there big differences in your headaches? I have been on the d3 for a year now and I don’t think it’s making a difference. I see so many people get success from it I hope I can too :/

@spiny so I skipped the melatonin last night and just did Benadryl and skipped my 6 am headache. I woke up with one a few days and not today! Maybe the melatonin was making it worse? I will continue experimenting and let you know. Do you have success with melatonin? Kat

I think one of the side effects is dizziness. I’ve heard verapamilcan be very helpful if you give it a chance and let it work a bit. If you can get past the side effects I’m sure it’s a great drug for clusters

@dehabel multivitams contain calcium and Batch suggests taking it 8 hours apart from verapamil since it’s a calcium channel blocker

Ohhhh okay @spiny that makes sense. It actually only says verapamil 80 mg on the bottle and I asked the pharmacist today and she said it didn’t say it anywhere on my script. I will call the neurologist tomorrow and switch it. It’s been almost a month and they are getting worse. So possibly I don’t have ch after all? I just find it so hard to believe that nothing works for me. I can’t be that rare of a case! I have been crying constantly. I hope this gets easier over the years

@Tom1956 welcome to the forum. Sorry to hear that. Was it difficult getting disability pension? Kat

Still on the d3 religiously. Only taking the multivitamin early in the am as to not clash with the verap. How do you know I am on the ER? I am just wondering. Thank you for the info and hugs kat

@EggMan welcome i don’t get autonomical symptoms either with my headaches. I get pain mostly behind my head and ear, also behind my eye. I was wondering if I had occipital neuralgia because an MRI of my neck a year ago showed an inflamed ligament at the base of my neck. I was told I needed physical therapy but I can’t afford that. Have you found occipital neuralgia treatments are helping? Kat

Hey guys, headaches have been getting worse lately. I upped my verap from 2 80 mg per day to 4 80 mg per day. Been on the d3 since last year but nothing seems to be helping. Is it really possible to have shaddows and atypical clusters every day for a whole year before having clusters actually behaving more like clusters? I am extremely discouraged and I feel like I am running out of options. O2 tanks are 78$ per tank so I need to try and conserve. Pain is starting to get more sharp. Starts at the back of my head (base of my neck), behind my left ear, left eye, and left upper teeth. Pain will occasionally (rarely) throb behind my right eye for a few seconds. I almost wish my headaches behaved like one specific thing so I could pin point. My headaches started July 6, 2019. I am wondering since that date is approaching, could be reason for the ramp up? Thanks for any advice Kat

I’m surprised I’m seeing so many negative reactions to the melatonin. I’ve been taking 5mg every night for a year now, I wonder if that would explain my daily headaches? Maybe tonight I will stick to Benadryl because my allergies have been out of control