kat_92

I attempted to take indomethacin for a few days but the side effects were so bad I didn’t even notice any change (good or bad) with the headaches. I was so dizzy (almost felt super drunk), throwing up constantly, it was so bad. But I’m thinking of asking my new neuro to prescribe it and come up with a different plan for me because I’d like to try it again. I’m glad it’s working for you!

@20yearslater welcome! This is my first time with Ch as well (started in July). I had very dull headaches for 3 months at a time and then they went away for 3 years! And then BAM. Back again. So I am thinking they are getting worse over time. I would start the d3 regimen! It’s a lot to type out but search for the info in the bar and you’ll find all the info you need. Many people have success with that. I have avoided sumatriptans because I’ve heard they can make cycles longer and more intense. That might be why your headaches are coming more frequently....or the cycle is just ramping up. It’s hard to say. Typically people with O2 use that as a first line of defense and the sumatriptans are used when O2 is not available ( in your case bring them to work!) I hope you find the forum helpful. I’ve gotten more help here than from most doctors I’ve seen (5 neurologists at this point...scary how ignorant they all were) good luck! Kat

@Luis have you also tried taking melatonin at night? I take 6 mg every night to help regulate my sleep pattern. I also doubled up on the fish oil, @Batch suggested it to help fight my depression

@CJW that’s awesome that you found success in MM! I’m going to start busting soon as well. I’ve been on the regimen for about 6 months now. At first I was having terrible stomach pains and diarrhea (sorry if that’s too much info) but @Batch advised me to up the magnesium to help combat that, split the vitamins up and must take with meals. Just some info if you wanted to give it a second try. It’s relitively cheap and easy to keep up with. Hope you continue remission! Kat

@Brain on fire I guess I am trying to just push through the shaddows as best I can without anything? There is no reason for it really. I’ve been trying to use it 3 or 4 times before I go to work during the week to avoid anything while I am working

@spiny only strong shaddow pain today. I’m trying to avoid the O2. I’m doing alright so far. I did drink a ton of water today, much more than I did yesterday. Could possibly be a contributing factor.

@Brain on fire ive had 2 v-8 today and my stomach felt fine. It’s energy in the form of black tea and green tea so I didnt get that jittery feeling that I get from Red Bull. I can’t speak to it helping with the shaddows because I still have them most of the day today. I had to hit the O2 tank at about 7:30 yesterday so we’ll see how tonight goes :/

@Brain on fire @spiny haha I just bought a pack! I got the pomegranate blueberry flavor...YUM! I’m hoping it works better for me. I was sick all day today from the Red Bull:(

@spiny thanks! I may need to try the v8 because Red Bull’s have been making me sick

Hoping everyone is having a pain free weekend thus far. I’ve been using Red Bull before I hit the O2 tank and taking some to work with me to help with shaddows. Sugar free Red Bull is the only drink I can take that doesn’t make me overly shakey. My question is, has anyone on the forum tried using just a taurine supplement? Is it the taurine in energy drinks that helps with CH aborts? Any side effects from the supplement etc? Thanks kat

@Banjer Taylor welcome to the forum! I too just recently joined in july. I was very fortunate to obtain oxygen pretty early on. It was very challenging. Not so much to get the script, but to find a place that actually provides the tanks. I got the proper mask from cluster02kit and it works very well. I’m still learning the proper breathing techniques and everything. I got on the D3 regimen a month after I started feeling terrible. I still get a lot of shaddow pain and I’m sure the D3 has helped tons. I take extra fish oil to help with the depression. My next step is to try busting with mm. I would read up on that if I were you. I would absolutely put all your focus on getting that oxygen. It’s imperative to abort the attacks. You’ll hear back from more experienced members soon. @Batch has all the answers for the D3 regimen. take care Kat

Yeah I’m going on 6 months unfortunately :/ only time will tell!

This is my first real cycle so I am still learning as well. Many people experience having dull pain the days or weeks before the actual cycles it. I think you should get on the D3 regimen right away. It might make your cycle shorter and less intense. Do you have oxygen? Getting mine was challenging but super worth it. Kat

@CHfather alright is seems more practical to take the E for the car. Thanks!

Thanks all for the responses. So I’m clear, an E tank requires a 870 regulator. What about an M60?

@Pebblesthecorgi thank you! Do I need to have the tank capped or can I have the regulator hooked up with the mask and everything? My mom is worried about starting the car with the tank in the car

I’m starting out the new year with the best news ever. I am not out of cycle, I am still getting hit...but...(drumroll) I FOUND AN OXYGEN SUPPLIER THAT ALLOWS ME MULTIPLE TANKS AT ONCE! This is huge. Finding oxygen in Miami has been super challenging. It’s $70 per tank without insurance. Oh well. At this point I care more about being stocked up. Thus far I have an M tank in my living room and I would like to get an E tank or an M60 for the car...I work nights as a bartender and that’s when I usually get hit so it would be nice to run out to the car during my shift. My question is, how to safely travel with an O2 tank in the car and which size is better. I hope everyone is feeling okay today. Kat

@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

@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

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

I’m in the same position. I’m going on 6 months now. I can’t break it. And since it’s the holidays seeing a neurologist is almost impossible. Stay strong Kat

Yeah I took it and it made me feel drunk and nauseous. Terrible side effects

Thank you all for the responses. I cleared up the ear pain with some Tylenol and amoxicillin. Turns out I had an infection. My scalp is still tender to the touch on my left side (cluster side). This is a new symptom for me. @CHfatheryes I have heard of this before. The only issue is that I am only allowed one tank at a time (M tank at the moment). I cannot have multiple. I will be working on this after I meet with my new headache specialist Kat

I was on the O2 last night for like 30+ min and it didn’t even make a dent in the pain. So it has me believing it’s defintely a viral infection. The scalp tenderness sounds like classic CH. I’m working on getting an awesome neuro but it’s taking longer than expected :/ still going strong on the d3 regimen. Any other suggestions? Thank you all Kat

Hello all, I may have jumped the gun too early. I think what helped my headaches for about 2 weeks was the steroid I was prescribed for my wisdom teeth surgery. They have been worse than ever the last 2 days. I’m very confused and depressed. I can barely swallow my pain is so bad in my ear. I can’t even brush my hair on the left side my scalp is tender to the touch. I’m trying to get an appointment with a new neurologist. Is intense ear pain common? Help kat