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Everything posted by spiny

  1. Stinking shame they won't let you read it without joining up!! Sorry CHF, I tried!!!
  2. Hey Madam, What units is the '216' in? nmol/L or ng/ml? The values for the different units are very different. 216nmol/L is a low number. 216ng/ml is a high number.
  3. Tony, I saw two genes listed on FB a year ago now. At least. I am delighted that the research is moving forward! I do have the migraine and sleep-wake ones. Won't it be interesting if D is affected by the same genes, or some of them? I think so!!!! I also find it heartening that combined, they found more genetic information to add! And the blood work you submitted may have been factored in too! They want all the info that they can get and verify.
  4. Hey Nugget! Welcome to the group. Batch - @xxx is the main guy for the D3 Regimen. If you know that you are low, then start with 10,000/day - minimum. Along with all the other co-factors. They matter!! I would do this for a month and get my levels tested again. What is your D3 currently? My first try was not perfect either. However, I have been cycle free for years now thanks to the Regimen. So, I am big believer in it! And yes, I am sure that it is the the D3 preventing cycles. All that I need to do to check that is to stop for two days and then deal with the hits that follow. Funny, I still check that at least once or twice a year during the normal cycle time for me. Hopefully Batch will see the tag and give you a more in depth reply.
  5. Hi Madam! I sent a pm to Batch. Hopefully he gets back and answers this for you. He is the expert on the D3 Regimen. ATB!
  6. Bilal, I have been taking them daily for years now!! In my experience, there is no worry about the Regimen failing if used year round. I take 10,000 of D daily, along with the rest. Batch is getting a trial set up to record the effectiveness for others.
  7. My husband and I take all of them, including the Quercetin and Turmeric. My blood work is where it needs to be too. Well, D3 is at 105, but they know why. I am pretty sure that Batch recommends both of them now with COVID out there.
  8. Hey Tiffany! no contradiction to me. You are correct. An MRI will not show nerve damage. It will show compression. Or that is my understanding. Maybe if the nerve atrophied, it might show as smaller than normal. I have had three over the years and all returned with 'No nerve compression present.' That does not mean that there was not a problem, just that compression of the Trigeminal nerve could be ruled out, so that helped rule out Trigeminal Neuralgia. They look for compression of the nerve where it comes through the skull. An MRI is usually recommended to rule out other conditions.
  9. Hi LLL and welcome! A MRI will tell if there is nerve compression. It is a good idea to have one to rule out 'other stuff' in the first place. ATB!
  10. Oh my g..!! How can they do that??? Sorry Tony, but this just rips at my heart. So stupid for the medico's to wait a freaking week + to fix a problem they created. JERKS! Hugs to you and your friend!
  11. Why the strike outs there Pebbles?
  12. Tony, congratulations on your new family member!! I pray that all ended well in that department!! I am delighted that you killed that cycle too! It is criminal, in my book, to penalize you for 'doing what had to be done'. Big hugs my friend!!!
  13. Nice that you are getting improvement Mit!!!
  14. Hi Khoogeveen and welcome! I have not tried a move to help my head, but we have joked about doing that or going to The Bomba Shack en masse for relief!! That is a little place south of the US that serves very special shakes.
  15. NC. Mountains!!! West. But hey, I was in Hickory when Charleston sent us a hurricane over a decade ago!!!! Had two tornadoes go past my house - one on each side. Good ole Hugo!! My house was the only one with all trees still standing.
  16. You are most welcome!! The regimen can be a life saver!!! Yes, some take longer, but I a delighted that you are sticking with it to gain the full benefit!! ATB!!!! You are not far away from me!!
  17. My first try with the D3 was not a success story. I was in the middle of a viscous cycle. In addition, when I added the B vitamins, my tongue peeled That was in response to the B12, which is notorious for causing that mess. However, I noticed that my hits ramped up more slowly and were a bit more mild. That was nice. The next summer, I had my D3 checked in August and found it to be about 63ng/ml. In the trash for working in the sun all summer! So, I began the regimen again, minus the B. My cycle never showed, Granted, I did 'other' stuff to head it off too, but it was the first year with no cycle for me. Then, I stayed on the D3 year round. It has been a huge help! Even eliminating some cycles completely! It seems that when people begin taking the vitamins, their hits become more mild and easier to deal with. Then, they go away. It make take a week and it may take 3. It's a personal thing. I have not heard of people having issues like slapbacks at all with D3. Initially you may get some days are better than others kind of thing. But when it kicks in and your D3 levels are high enough, the whole mess can just melt away
  18. CHF provided the link for Licorice Root protocol, so you have that now. Definitive answers on can you take melatonin with MM, since that is a recurring question. How much Verap can a person be on and still get relief? Currently we think that up to 360 as a daily dose will not block. The straight and skinny on that will help! Like why does x amount block and b amount not block? The 'Why' would be awesome Which of the antidepressants are compatible? Many are on them in some form. This link: has a lot of info that we run with. It seriously needs an update!!! There are new drugs and there is new knowledge that needs to be incorporated and this post by Tommy is quite old, so some meds are not listed at all! It would be very helpful to me to understand how certain meds affect tripping and WHY!! Then I could use the chemical structure as a guide if desired. And is 'shutting the door' accurate? I can vouch that too many SPUTs prior to a bust will ruin the bust. The logic behind the theory is good. But is it true and for how long are the receptors blocked? Is it person dependent? Do certain meds change that or is it a constant not a variable? Personally, I would like to know the chemical structure of a molecule that will disrupt a bust!! That can be looked on an a needed basis if we knew the molecular structure that will interfere and why it does cause issues! I suspect that there might be more than one, but perhaps there is a simple visual that shows the 'why' of it? As in will tab A fit into slot B? I will think on this some more Brendan!
  19. Jeebs, the Epi proved to be a provoker of Hell for me. Repeatedly! I cut my thumb with Machete cutting corn. It was sewed up no problem. But the 'hand specialist' was an idiot and it took 4 surgeries to fix the mess that he made. Anyhoo, I woke from surgery and was fine. No biggie actually. But, he pumped me full of epi. The hospital was 2 hours from home and they gave me no meds as it was supposed to stay numb for 4-12 hours post surgery. That was not true for me. It came alive in less than an hour and I had no pain meds and a lot of pain. I had 10 hits in the following 24 hours. My personal record. It was hell night. No cycle started though. It was summer and I was not in my normal cycle time just yet. The next trip to that place and they were told that it would be a general and NO epi ever again. I had no hits. When I had the great colonoscopy done, I told that one that I might need O2 post even though it was just sedation. She asked how I wanted it? 15LPM and a non-rebreather for 5 minutes and then 5 minutes at 5LPM. Well, they sedated me and I got a hit. So, they did full anesthesia at that point as I was thrashing allover according to them. I hit the recovery room, woke immediately and sat up - her cue on the O2! Cleared it right up and no more issue with that one. They were very shocked that I woke immediately. They had just told my husband that it would be over to an hour. Nope, she made a bat turn and let him know that I was up and almost ready to go. Now, when I go the THAT hospital, we have a procedure in place and my chart is noted for NO EPI. They also have O2 waiting when I wake. I can see the tank!! I made a believer out of that doctor. When the gallbladder came out, the O2 was right there for me. But, no epi, so no hit! I refuse to have dental work done during my 'normal' cycle months! My dentist won't work without epi. Yes, it shrinks the blood vessels to reduce the bleeding. It also provides better deadening of the area, so the dentist is happy with that and won't work without it. Were it possible, I would change dentists to get nitrous!! That would be the bomb!!!
  20. Hey Ricardo! Are they wanting questions on how prescribed meds interact with MM and such? Questions on which meds are okay with MM and RC? I want to help, but am somewhat at a loss here. The only big one I know of off the bat is the licorice root protocol and MM. What is safe, if anything. Please, give me a bit more to go on. Thanks!
  21. The 1 in 10 has changed to 3 in 10 and is now at 4 in 10 I believe. I find it unfortunate and infuriating that doctors don't keep up with their own field!!! But, CH patients are few, so I sort of understand it. There are at least two studies in the US currently that are testing Magic Mushrooms for CH, so that is a huge plus! As a woman, you will find that you almost certainly have to advocate for yourself. And almost all CHer's must advocate for themselves too. Have you tried an ice cold energy drink at the first sign of a hit? It can really help. I can't tolerate them, but use iced coffee for the same purpose. I grab it before I hit the O2. In addition, as soon as you wake with a hit, begin deep breathing and forceful exhale on your way to the caffeine and O2. I think it pays to have a plan of action for your hits as that can help occupy your brain with meaningful stuff to help as opposed to quickly falling into hell and thinking there is no way out. As in the more control you have or you take, the better the outcome. I have found that anger with the situation causes my hits to be worse. When I 'take control' by doing X in an orderly fashion, it keeps the pain level lower. My anger jacks it up even worse than it would have been. Have you tried the D3 Regimen? It can be a big hammer in your arsenal! Many have gone completely pain free just taking the vitamins. Others experience a reduction in pain level and a slower ramp-up of pain. Both of those things would be a huge help for you. I am not sure what country you are in, but some require a script for D3. Others do not. In addition, we love naps when we are in cycle, right? Try to make up some lost sleep. Well, in short order those naps become a trigger in themselves. You fall asleep and wake with a bruiser of a hit. Naps become a no-no and a strict sleep schedule often must be implemented. If you sleep in a recliner with your head kept higher than your heart, you can get some decent sleep and will wake sooner in the attack if/when it comes.
  22. Hi Eli. Unfortunately most doctors don't understand Clusters, including many Neurologists! Many years ago I was told NOT to take Birth Control because of migraines. And i was also told that women did not get Clusters as well. Well, how wrong that was!!! Many doctors need educating on Clusters. I did HRT with no issue regarding my Clusters. Perhaps let your Gyno know that Clusters are NOT migraines, but are often treated the same because they don't have 'meds' for Clusters, just hand-me-downs from migraine patients. He should let you do a trial run at least. You might get more hits and likely you won't see any change in your head, but the 'other' will be helped immensely! Best of luck! And have you tried O2 using the proper flow rate and mask so that it actually does something? Or were you handed a script and sent on your way with no instructions? It makes a huge difference!!
  23. In addition to the 2 every 24 hours, there is the insurance to deal with. Often they will only 'allow' 9 or 12 a month! So, you might want to check on that so he is not in for a shock when a refill is denied. ATB!
  24. I had fever and was very tired after the second jab. No hits for either one fortunately. I did wait until I was well past my 'normal' cycle for a few months. I don't know for sure, but most of what I have read said 'no problem'. Did he begin another 'cycle' or experience 2-3 hits after the shot and then it quit? As in, he had a rogue hit or three?
  25. Vipul, do not let him talk you into the pills!!! Those are for Migraines, not Clusters. They take too long to work to be of any help for most.
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