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ClusterBusters

kat_92

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Everything posted by kat_92

  1. kat_92

    Diagnosis

    @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
  2. kat_92

    the joy of CH

    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
  3. kat_92

    the joy of CH

    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
  4. kat_92

    Oxygen ROCKS

    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
  5. kat_92

    Diagnosis

    @EggMan yay I love supportive doctors! That’s awesome yes it is quite expensive. And it’s annoying to rely on the medical supply company. Go for the emgality then! Keep us posted
  6. kat_92

    Diagnosis

    @EggMan I think there is a thread someone started on here about emgality. Quite a few people have posted and I just dont think the results are promising. I don’t know. I think it also depends on whether you are episodic or chronic. Maybe episodic sufferers have better results? Also I’ve been to 6 neuros now and I think they are all super ignorant to the severity of clusters so I don’t trust a lot of what they have to say. Not saying all doctors are like this. But the ones I’ve encountered...yep. Also my doctor is SUPER medication forward. Every time I go he asks any luck with neproxen? Any luck with relpax? Fioricet? Etc. it’s SO ANNOYING
  7. kat_92

    Oxygen ROCKS

    @CHfather OHHH okay that makes so much more sense. Thank you!! I’m still learning thank goodness for you all on the forum. And yes @jon019 welding 02 is quickly becoming a more attractive option
  8. kat_92

    Oxygen ROCKS

    @jon019 yes, but the script was written by my doctor for 5 lpm. My regulator goes up to 25 lpm. I only find relief at 15-20 lpm, so at this rate I am burning through my tank rather fast, right? Kat
  9. kat_92

    Oxygen ROCKS

    @FunTimes yeah I am able to get more than one tank at a time. I ordered 2 and they will be here tomorrow. But I pay $78 per tank :/ ugh it stinks. I need to ask my doctor to up my script to 15 lpm. I am going through them too quickly
  10. kat_92

    Diagnosis

    @EggMan I myself haven’t had much luck with many treatments I’ve tried, except for oxygen. That works great for aborts. But preventatives are where you want to go because you need to get them under control. I was given emgality as well. But I never took it. I feel like for me, it will cause more harm that good with clusters. I’ve heard people with migraines respond very well to Emgality. But clusters and migraines are so different. If you are open to trying different treatments, I would go for it. I am apprehensive. Kat
  11. kat_92

    Oxygen ROCKS

    CHF thanks for the reply. I have an M tank and my regulator goes up to 25lpm and I have a second regulator that goes up to 15. The issue with welding o2, how would I even get them to let me rent tanks? I don’t think tbey would believe me haha. Also, how high does the flow rate go on a welding tank. When the doc prescribes it they can say 0-10 lpm on the prescription. Thanks kat
  12. kat_92

    more positive press

    Great article. Thanks for posting
  13. kat_92

    Diagnosis

    @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
  14. 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
  15. kat_92

    Another sleepless night

    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
  16. kat_92

    Another sleepless night

    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
  17. kat_92

    Another sleepless night

    @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
  18. kat_92

    Meds, Dosing, and Schedule?

    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
  19. kat_92

    Another sleepless night

    @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
  20. kat_92

    First post here, and a more resilient cycle

    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
  21. kat_92

    Nurtec medication?

    @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
  22. kat_92

    Another sleepless night

    @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
  23. kat_92

    My ginger shot recipe!

    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
  24. @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
  25. kat_92

    Ramp up. Need help

    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
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