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kat_92

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Everything posted by kat_92

  1. Such valuable information! Thank you for all you do Batch. I’m so lucky I found this group kat
  2. kat_92

    Shadows!

    I should clarify I ate about 10 of them in one day hahaha
  3. kat_92

    Shadows!

    Hey everyone! I just bought these at Trader Joe’s the other day and they really helped my shadows yesterday along with some ginger tea. I had coffee against my better judgement and had a very strong shadow for about 6-8 hours! This helped a lot kat
  4. Typical rule is to wait 5 days until any other medication is out of your system
  5. @ThatHurtsMyHead I agree! Sounds like a great idea. I have found that neurologists are very medication forward people. I’m sure they get some sort of commission from pharmaceutical companies for pushing these meds. If you had the opportunity to prescribe an oxygen tank which is known to be the safest and best abortive, why wouldn’t you? Kat
  6. Hey thanks @Bryan ! Yeah I have looked at the post. I was able to get my primary care doctor to send a script for me kat
  7. Hey everyone, i cannot get my doctor to refill my oxygen tank. I have been fighting about it since July. It’s ridiculous. I guess this post is a bit of a reach, but are there any folks on this group from Miami and have a neurologist that willingly prescribes tanks for clusters? As a last resort I will need to go the welding route. I am hoping to avoid that. Thank you!! Kat
  8. @Bryan yeah that’s awesome!!! Long live the D3 regimen
  9. @Cluster Dave Hmm that’s odd. Maybe the MM gave you a month and a half reprieve. Any luck with mm this time around? I believe I am chronic and the mm are keeping the hits or shadows very manageable for me which is good news!!
  10. @Cluster Dave damn I’m sorry to hear that. Anything that could have possibly made them so tough for you this time around? The d3 does make a difference. But you need to be consistent with it. Any progress is good progress kat
  11. Can you get the d3-50 on Amazon? That is where I get mine
  12. hey @Cluster Dave I am no expert in the d3 regimen, but I have been on it for over a year now. I can say I immediately began the loading dose and following the regimen before I got my bloodwork done. I did make an appointment to get bloodwork done soon after though. It is very important. You must do the loading dose with the rest of the regimen. Other vitamins are essential in vitamin d actually absorbing in the body. Chances are, unless you are outside pretty frequently your D levels are lower than what is needed to get relief for clusters. kat
  13. Hey welcome to the forum im sorry you have to be here. It’s great that your sister has support with her. It’s sometimes just as hard for loved ones seeing their loved ones suffer. My boyfriend has said he wished he could take these from me. It’s mentally and physically draining. The good news is..you found cluster busters!! The help that I have gotten from the people on this site is something I can’t even put into words. I have been to countless neurologists and tried every medication under the sun. Cluster headaches are much harder at the beginning when you first get a diagnosis and are dealing with them. You are confused and frustrated that this is even happening to you. Especially when you read online that mostly men suffer! I think by now more women are getting this as well. At least from what I’ve seen. Once you learn how to live with them, it gets somewhat easier. I recommend starting with the d3 regimen. That’s the link directly from the cluster busters files site. I’ve been on it for a year. You need to follow the instructions very carefully. This is something you can get started on right away. I highly recommend it. You can also speak to your doctor about trying verapamil immediate release pills. It is a calcium channel blocker that helps people prevent CH cycles or lessen the intensity. The best abortive is going to be an oxygen tank. There is tons of info on here about the tanks, sizes, etc. I would look into that immediately. Energy drinks can be effective for shadows or even lessen the intensity of the hits you get, if taken right away. I drink ginger tea a lot. It helps with those annoying shadow headaches that linger all day. Lastly there is busting, if that is an option for your sister. You can read up on that as well on the “new users read here” banner. Everyone has been in your sisters position at some point, she isn’t alone. It’s very important that she understands that. It really helps with mentally coping. I am a cluster newbie myself. I have so much respect for everyone on this site. Best of luck, keep us posted. Kat
  14. 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
  15. 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
  16. 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
  17. 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
  18. 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
  19. @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
  20. @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
  21. @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
  22. 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
  23. 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
  24. 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
  25. Great article. Thanks for posting
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