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ClusterBusters

kat_92

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Everything posted by kat_92

  1. kat_92

    Mindset Advice

    Not to take over the thread but I think everyone has their own fears regarding CH. mine is that it will get so bad I’ll be out of work and have to go on disability, or having children and being pregnant having to stop MM. anyone else have similar fears? Kat
  2. kat_92

    Mindset Advice

    I wouldn’t be discouraged just yet! If the Mm don’t stop the headaches completely they might make them at least be tolerable. Try and see if you can find some more. We have all been here, that feeling of discouragement. I am chronic and I have had many depressing days just accepting this into my life. Just try to do what makes you happy any time you are pain free. This is a life long condition. There is no cure. Accept it and enjoy ANY pain free time you get. Kat
  3. kat_92

    Long cycle, bad day

    @SoCalCH hey! Sorry you are having such a rough time. We can all sympathize. What was your busting regimen? Did you follow the 5 day rule and completely free of meds? Maybe that’s why you haven’t had much success with it. It took me 6 attempts to get some pain free days! Kat
  4. The great part about the regimen is that you can do it WHILE on MM. so you get the best of both worlds. I stick to 50,000 IU per day for an extra one or two weeks when my cycles are particularly bad
  5. @Gilad102 hey! I get severe shadows during the summer months and along with busting and the vitamin d method they improve a lot. I did need to do quite a few busts to get a pain free status though. I think 5-6 every 5 days. It was tough. Results were worth it though. From what I understand clusters always change up on you once they’re under control kat
  6. Hey all, I was doing some more research on Ch just because now that it is officially part of my life I want to stay informed. I’m getting more comfortable telling people this is what I have. I no longer say migraines, stress headache etc. I am curious how many people in this group have noticed changes in their ch over time. Specifically, going from chronic to episodic, and visa versa. Intensity of ch over time? This is merely out of my own curiosity. I cannot find much about it through reading. I am trying to get first world experiences. Thanks! Kat
  7. kat_92

    Epidosidic Advice

    @maskedmarvel the “what if’s” are always the worst. I have come to the realization, if I am in pain and something has helped I’m the past, I will use what I know works best. Many people do a bust once a month or 60 days to prevent future cycles. I haven’t read anyone saying that they triggered a new cycle. I am chronic so I can get about 3 weeks to one month pain free with MM.
  8. kat_92

    Epidosidic Advice

    Hey @maskedmarvel ! I’ve never heard of shrooms triggering an attack if your are using them as a matinence dose? Or you only took some MM when you were feeling some headaches coming? You might have been experiencing some slap backs
  9. Hey you’ve come to the right place. Many people on the forum report that their significant others are great about helping them deal with clusters. I have yet to have a bad attack (knock on wood), I have been attacking them head on. I found that alternative methods have helped a lot with the anxiety and dread of this disease. You need to also realize that even though this is so unfair, it’s hard for someone to fully understand a level of pain if they themselves are not going through it. This is a life long affliction and significant others should be prepared to help their loved ones in any way they can. I really hope you find some peace of mind. Kat
  10. kat_92

    When do you consider your cycle over?

    Mine are year round with medication. MM, vitamin d etc. they get very bad from May-August
  11. Such valuable information! Thank you for all you do Batch. I’m so lucky I found this group kat
  12. 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
  13. kat_92

    Shadows!

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

    How do triptans (Relpax) affect magic mushrooms?

    Typical rule is to wait 5 days until any other medication is out of your system
  15. 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
  16. kat_92

    Oxygen question for people in FL!

    @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
  17. kat_92

    Oxygen question for people in FL!

    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
  18. kat_92

    D3 Experience

    @Bryan yeah that’s awesome!!! Long live the D3 regimen
  19. kat_92

    Question about D3 + other

    @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!!
  20. kat_92

    Question about D3 + other

    @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
  21. kat_92

    Question about D3 + other

    Can you get the d3-50 on Amazon? That is where I get mine
  22. kat_92

    Question about D3 + other

    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
  23. kat_92

    My sister, I"m helpless

    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
  24. 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
  25. 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
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