kat_92

@ZBM hey I’m a 30 year old female and I’ve been on the regimen since I was 26. The cofactors are nothing but good vitamins you should probably be on every day anyway. Magnesium (good anti inflammatory properties), and fish oil is good for the heart. You can even add any turmeric supplement in there too. Really good anti inflammatory properties there as well. @xxx will chime in shortly I hope. He is the d3 GOD

@Shaun brearley gosh I’m thinking back to my experience on topamax. It seriously had me so zonked out. I lost so much weight I looked like a zombie. What horrible stuff. When I finally saw my second neurologist in my headache journey he actually told me to UP MY DOSE. Needless to say he was history shortly after. If I were a doc it would literally be my LAST medication I would think to prescribe for headaches

Trust me I know the feeling. Verapamil is a calcium channel blocker and a lot of people with CH have success with it. They might need to play around with the dosage a bit to find what works but it’s worth a shot as a preventative. If you partner it up with the D3 regimen, you could save yourself a lot of pain. Just remember to take it 8 hours apart because the multivitamin has calcium in it. Read more about that on the d3 information link posted at the top banner.

@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!

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?

@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

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.

@CHfather all great ideas! Thank you so much

@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.

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.

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.

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?

LOL you guys crack me up

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

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