kat_92 Posted December 29, 2019 Share Posted December 29, 2019 Hey all I’m currently up with my O2 tank. They are non stop and worse than ever. It started at about 6pm and I have gone through waves of shadow pain and actual hits until now. I don’t know what to do. I don’t feel like the O2 is helping. I am having such panic attacks that I don’t think I’m breathing it in right. Can’t get a hold of the neuro around the holidays. I know the hospital won’t help anything. I tried upping my D3 the last 3 days as per Batch and it doesn’t seem to be helping. I guess I don’t really have any questions I just feel alone and you all are the only ones who understand. kat Quote Link to comment Share on other sites More sharing options...
Luis Posted December 29, 2019 Share Posted December 29, 2019 Hello, it’s hard to live with this illness. Especially when you don’t know when it will end. Be strong. Think about things that you live for and that keep you going. That always helps me when I am having an attack. I also moved in with my family for now. I couldn’t handle being in pain and alone. So if you are alone, reach out to someone that you love. Don’t go through this alone. You might also try ginger tea. It’s helping me firs the past two days. Take care of yourself. Be strong. Quote Link to comment Share on other sites More sharing options...
Multi-D3 Posted December 29, 2019 Share Posted December 29, 2019 @Kat_92 did you try the multi vitamin / D3 combo? 1 Quote Link to comment Share on other sites More sharing options...
kat_92 Posted December 29, 2019 Author Share Posted December 29, 2019 @Luis thank you. Luckily I live close to my family and I have my boyfriend who are very caring. But only we know how to deal with the pain at the end of the day. I am going to ask my neuro to prescribe me verapamil. Many people have tried it with success. I have solely been relying on the vitamin d regimen up until now but I think I need medication;/ do you have O2 and what breathing technique do you use? Kat Quote Link to comment Share on other sites More sharing options...
Pebblesthecorgi Posted December 29, 2019 Share Posted December 29, 2019 If you are going to pursue a neurologist for verapamil you might consider a boost dose of steroids to help break the cycle. Verapamil is generally regarded as a preventative rather than a cycle buster. They can suck but they can be effective in getting you some rest and may arrest a cycle 1 Quote Link to comment Share on other sites More sharing options...
kat_92 Posted December 29, 2019 Author Share Posted December 29, 2019 @Pebblesthecorgi yes I’ve done a steroid pack 3 times since my cycle started (one was required with my wisdom teeth surgery) and this effectively lessened the headaches. Will ask again thank you Quote Link to comment Share on other sites More sharing options...
Pebblesthecorgi Posted December 29, 2019 Share Posted December 29, 2019 Steroid packs (medrol dose packs) generally are not sufficient for cluster headaches. usually you are better served by 60-100 mg of prednisone for 2-3 weeks followed by an optional taper. Of course you have to consider bone mass, underlying diabetes, lung disease or underlying immunocompetence. The bottom line is the typical dose pack is less likely to help someone in cycle vs a more aggressive regimen. Some of the horror stories surrounding steroids like acute vascular necrosis or cataracts are generally independent of dose and rare. Its always a risk benefit trade off. Quote Link to comment Share on other sites More sharing options...
Geisha Posted January 3, 2020 Share Posted January 3, 2020 Hey Kat So sorry to hear what you are going through, I know it is hard to get your head around at the moment in this time of despair but the future is bright and thanks to this site and the cluster buster community there more options and support than ever to tame the terrible beast. Have you tried the busting method? I know this comes with its challenges sourcing the busting materials and takes bravery to go to this next step but this is the only thing that has effectively worked for me to break a cycle (been episodic for 20 years undiagnosed for 12 years). Glad to hear you are on the O2 to abort the attacks but to break this cycle you are I encourage you to look into the busting method outlined on this site. Let me know if you have any questions about it. Sending positive energy your way. Geish Quote Link to comment Share on other sites More sharing options...
Andre Posted January 7, 2020 Share Posted January 7, 2020 with love Quote Link to comment Share on other sites More sharing options...
Andre Posted January 7, 2020 Share Posted January 7, 2020 with love Quote Link to comment Share on other sites More sharing options...
Andre Posted January 7, 2020 Share Posted January 7, 2020 With Love. Quote Link to comment Share on other sites More sharing options...
Andre Posted January 7, 2020 Share Posted January 7, 2020 With Love Quote Link to comment Share on other sites More sharing options...
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