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kat_92

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Everything posted by kat_92

  1. @Gunner Wow a 13 year remission period sounds like a little slice of heaven. I would say you are on the right track, mild attacks or shadows after a few weeks of hell might mean the end of a cycle for you. I’m hoping this is the case for you!
  2. hi Jackie. I’m sorry you have to be here. Have you seen a neurologist and been appropriately diagnosed? In my experience with topamax, it did nothing to help my headaches. It made me feel like I belonged in a nursing home. I was 22 years old and could barely eat or take a shower. It’s truly horrible medication and I don’t know why a doc would prescribe it for this? Have you or your doctor thought about verapamil?
  3. @Alicia Clusterhead if the vitamin d regimen is working please don’t stop it. The side effects are minimal and it’s good to be on year round. I don’t understand how a doctor can tell you to come off vitamins
  4. I’m really sorry to hear about this. Without being negative, you need to find a new doctor asap. The fact that she wants you to stop oxygen is WILD. From what you describe, you fit the profile. I have seen about 6 neurologists since college…many of them insisted I had migraines. If your blood work is fine, there is no reason to stop the d3 regimen. I am annoyed for you over this.
  5. @CHfather all great ideas! Thank you so much
  6. @spiny yep I already got all my meds filled here! I’m not gonna fight with the insurance on the zomig nasal spray there is no point. I’m gonna ask my neuro if he has any samples. I’ll definitely bring some extra sputs. Not sure where to put them though.
  7. Hi Rachel! Your PCP is absolutely wrong. What they probably mean is that it’s very hard to get insurance to cover it. They can very easily write a script and fax it over to a medical supply facility. You may just need to be a self pay patient. That’s how I do it.
  8. I so appreciate being able to come on here and talk through any concerns I’m having with my CH. it’s much easier than talking to family. My trip to Puerto Rico is 5 weeks away, and I wanted to go over my plan with you all to see if there is anything I should add, avoid, or improve. 2 weeks before my trip I plan on busting with MM at least twice. I also talked to my doctor about increasing my verapamil slightly. He told me it would be fine for the trip, since my blood pressure is good. He thinks I’m on too low of a dose anyway. I am on 80mg 3x per day currently. I do not have a way to get oxygen on the plane or at my destination; so I will have to do without. I am planning on loading on D3 and the cofactors a week before the trip. As for MM, a SPUT will be taken on the runway as well. I will be plenty hydrated and I’ll buy some Red Bulls before hand. I expressed to my doctor that my concern wasn’t so much getting hit on the plane (although that would SUCK), but mostly having multiple hits while on my vacation. He gave me a steroid taper he said I should take if I start to experience hits while over there. He also told me that could help with the flight back as well to avoid a hit. He also prescribed Xanax and Valium for the flight because he said any high stress leading to the morning of the flight would likely trigger an attack. Any thoughts here? The only nasal spray I have is the ergotamine. Much love to you all. My hope is I am pain free and I can start traveling and enjoying life again.
  9. I was recently on another CH page that I am part of, and I read a very interesting comment from a user. They claimed, it is better worth it to try sumatriptan before trying any kinds of shrooms or lsd. And I commented stating that overuse of suma can cause rebounds, longer cycles, and even chronic cases. He seemed to disagree. Thoughts?
  10. Ugh. That makes me so angry. What he means is, it’s hard to get insurance to PAY for it. He can easily write a script, and you can be a self pay patient. That’s what I am. I pay $78 per tank as I need. That includes delivery and set up. I’m so sick of these doctors
  11. The ergotamine might be my only option since insurance isn’t covering the nasal spray. $1,300 out of pocket I told them where to shove it
  12. Good afternoon all! I just had my first appointment with my new neurologist and it went super well. He was on board with my oxygen. I told him about my upcoming flight, and he prescribed Xanax for the anxiety, and gave me a sumatriptan injection (3 mg sample). He also prescribed zomig nasal spray, and something called ergotamine? I can’t find anything on this and clusters. Does anyone have any information on this? He also prescribed a steroid pack in case I get hit while I’m on vacation. Does anyone know of zomig and ergotamine and it’s interfering with busting? also, he asked me about mushrooms and was on board with this method of prevention.
  13. @Alicia Clusterhead okay. I think for the loading dose you need a higher amount of d3. Batch recommends the d3 50000 water soluble (the brand is biotech on Amazon). Also need to add a multivitamin and vitamin k. Have you considered verapamil?
  14. @Alicia Clusterhead I get where you are coming from with the shrooms. Are you taking the rest of the vitamins needed along with the vitamin d? The regimen won’t work if you are only taking the vitamin D. Sorry to hear your hellish nightmare
  15. @BoscoPiko so sorry to hear about that! My corgi, Norman, is my entire life. So I can sympathize with you. It’s no fun when our pets are down and out. Dogs pick up on our emotions so try to stay positive as best you can! I’ll share a picture of my Norman to cheer you up. do you have any strong ginger pills for the shadows?? Glad to hear the seeds have helped
  16. Great to know. Are they the ones who prescribed your oxygen
  17. I don’t mean to respond with irrelevant information but did you say you are in North Carolina? I am moving there in 2024 and would love to know who your doctor is so I can have my oxygen once I move as well. I have oxygen script down here in FL. Thank you!
  18. I thought it could be something like that, but she made it sound like they simply don’t carry oxygen tanks at their supply…and I was like “well I have one of your M tanks at my house right now LOL”
  19. Update: I spoke to the manager at the O2 supply as calmly as I could. Finally got my script after hours of back and forth. It is seriously distressing how much effort it takes to get simple things so we can live without pain
  20. I swear, I don’t even know who to complain to anymore. My oxygen prescription was sent back to my doctors because they “don’t have the equipment”. Literally, wtf. I’ve been getting tanks there for 2 years now. I’m just about ready to pull my hair out.
  21. Hello all, I went to my GP today (he is the best doctor in the entire world) and insists that oxygen is the saving Grace to treating ch, so I am very lucky. I got that script renewed today. Anywho, I was talking to him about getting CH hits while flying. He apologized for not having more information other than “you’ll never know unless you try it”, but he is right. He wrote a letter for me to the airline stating my need for immediate O2 should a headache arise. Does anyone have experience with this? Do I need the call the airline in advance? Or maybe get it faxed over? Thank you! kat
  22. @Bejeeber wow! I feel bad for posting in a panic, but I’ve NEVER heard of this symptom of a virus. That is crazy. The red eyes combined with the fact that I had a headache flare up had me FLIPPING out. I am still going to bust today for good measure. 1.2 grams of golden teacher. It’s crazy how so many months of pain free time can make you forget how awful these things are thanks guys
  23. Hey guys. Wow. This round of covid is throwing me for a loop. I began the loading dose of D3 3 days ago, and I’ll be busting tomorrow (can’t come soon enough). My clusters were so under control and then BAM. So I woke up today and both my eyes were glued shut and when I opened them they were wet. I read somewhere that covid causes pink eye. But 2 days ago I had my eye very red on my cluster side, and today it’s red and wet on the other side of my face. I can’t tell if this is clusters or a side effect from covid. I’m really struggling here:(
  24. @CHfather thank you so much for the response. I have turmeric pills on hand that I can start using ASAP. I won’t increase my verap I don’t think it’s a good idea. I also recall a higher dose a few months ago making me so tired. I wouldn’t want it to interfere with my busy. I also have melatonin and Benadryl. Should probably take either one at bedtime. I have been so sick for a week now so it’s just hard to tell if it’s clusters or headache from covid. The red eye has me very concerned. It’s lasted over 24 hours now. @BoscoPikoi also read that online. But I do not have any other conjunctivitis symptoms (nothing gross coming from my eye). Feeling mostly tired today because I didn’t sleep much. Looking forward to busting on Tuesday.
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