spiny

Batch, off topic a bit, but I have a question. Why the Pepcid for COVID? I understand it helps, but not why. Any idea? Thanks!

Wow!! A headache from the Prednisone? That shocks and sucks too!! Are you taking several pills per day, or one 50mg pill?

The Pred is used to bridge - it stops the hits while the Verap builds up in your system. I am confused. If you have not been taking it, how would you 'ramp it up'? Yes, you should be taking it while on the Pred. The Pred buys you some Pain Free time while the Verap. builds up in your system to a therapeutic level. The idea is to take the Verap while taking the Pred and when you stop the Pred, the Verap has you CH under control. Does that make sense? You can't stay on Pred due to the joint damage it causes. So, you are not taking Verap now, but do you have a script for it? As for the D3. 50,000 is a 'loading' dose, to be taken once, not daily. Your daily dose will be less. That loading dose builds the D up faster when you are deficient. The daily dose will be around 10k, not 50k. Doing the loading dose while on the Pred and beginning the D3 also can improve your chances of getting PF in a shorter time. So yes, do together, not one after the other.

FunTimes covered a lot of it Dave. You don't change the Verap that fast. Stay on your beginning dose for now. You do want the short acting, not the extended release version. Works much better for most of us. If it says 'EX' or 'ER' and take twice a day, that is extended. Ask for a change. D3: Doing the loading dose! It will help. K2 is available on Amazon. Your Pred, likely will get you pain free quickly. As you taper down that 50mg, you might get a return of your hits. Hopefully you can avoid that with the D3 and Verap. ATB!

They stated that it would go through a review process before appearing. I think it should show in a day. Update: I received an email saying they received the comment. I also use Chrome.

Botox: Some people find it helpful, others do not. Type Botox into the search bar and you can see what members who have tried it have to say about the effectiveness. Happy that you are getting on the D3 Regimen ASAP. Yes, you are taking several D3's when your are loading, but that intake does get reduced, so the fistful is not forever! Remember that you can still bust while taking Verap! A dose of 320 or less has been found not to interfere in most cases. So, you might try them again even if you are on Verapamil.

It is an old medication. And has fallen out of common use due to the potential side effects. In addition, I don' think that it can be taken with any Triptans. Most doctors do not prescribe it as other medications with a 'safer profile' have taken its' place. It also conflicts with other medications. The D3 will take about a week and up to about three weeks to see the improvement. A few get immediate relief when they begin taking the vitamins. It is healthy and good for you. Its' biggest claim to fame is eliminating Ch completely for some and lowering the intensity of the hits and slowing the ramp up for others. Keeping them at a lower level of pain is a benefit always! And slowing the ramp up allows you more time to get started on your O2. I suggest getting the lower dosage pills and taking 10k to 15k a day till the 50 arrives. That way you can get started on the entire regimen ASAP. The benefits are surprising for many. Also, 5k and 10k D3 pills are usually all over the net to purchase. If you can't get the specific one recommended by Batch, I'm sure he would tell you to take another D3 to get it in your system. The one he recommends is the 'best' in his book. If you cannot get it, then take a different one. Just take it and the co-factors!!! If your doctor will do it, get a D3 blood test to see what your levels are currently. He might just prescribe the big one for you! In the US, we can order the blood test ourselves. Not sure about Canadian policy is regarding that bit. But, it would be good for him to know that you are deficient.

If needed, you can take several pills to get to the 50k you want. May not be the one recommended by Batch, but it will get you the D3.

Thanks for attaching the two articles. Nice info to have here.

Happy Dance!!! That is wonderful Bryan!! I am so delighted for you. Your detailed log will help others to appreciate the value of the Regimen. Thanks for posting it!

Welcome SEC!!! Sorry you need us, but this it the place to talk and get help. Yep. The beast morphs and surprises us with new torment. Just when we think that we have won, he goes 'bang' and then you are off to the races again. The D3: Your levels are low! I had to keep my D3 at 10,000/day all summer due to excess heat and rain. No sun for me either. So, yes, upping it should help a good bit. I used to be able to drop to 5,000/day in summer with gardening, but not this year. Sounds like you got stuck in that boat. You would like your levels to be above 80 and I prefer 100. As for dosing, we can address that on a closed board - Theory & Implementation or Share Your Busting Stories. The micro bit does not have a good track record. Try grabbing an Energy Drink or Shot on your way to the O2. Slam it down fast and then huff. If you can't take those, cold coffee works too. It will help your O2 work better and faster. Hit the O2 at the first sign. I know, that is impossible when they wake you, but grab and go when you first wake. ATB!

Hi Rios! I see that you have gotten some great advice already! Has she tried Prednisone? Like a 5 day taper pack? It will kill the CH while she is on it. Not good for long term, but great to give her a much needed break. While on that, she could be starting with the Verapamil short acting and let it get to work. As you know, any physician can prescribe those for her in the short term. It would be a start. Verap should be titered up with checks for blood pressure and heart monitoring to perhaps. She is having a lot of Trigeminal Neuralgia Symptoms I see. When mine gets fired up, warm heat really helps a lot. I would hold my face over a heat source and be soothed enough to lie down after a while. I don't want anything to touch it either! Cold made it worse. Those were the early days of my trip down this path. I slept on my back on the sofa to prevent rolling over on it and setting off another attack. While not the most common form of CH, some of us get hit thru the temple area the hardest. Mine feels like a hot railroad spike is being driven thru my temple and into the nerve of my eye. It feels light lightening strikes crawling further and further across your face as the branches light up. I try to 'push' it back by lightly stroking the ends of the tentacles that are invading my face with a screaming hot nerve pain. Then, it reaches the point where you cannot touch any of it and just rock in agony, praying for that damn octopus to move back where it came from. It leaves the whole area sore. And leaves you exhausted after. Even if her symptoms are not the most prevalent type, it likely is CH. Just a variant. They might want to treat her for the neuralgia first, but I suspect that it is not at the bottom of the problem. Perhaps that is why the shots are not working. And getting hit right after falling asleep is classic!!! Hugs to you both and many thanks for being her supporter!! We love our supporters! And thank you both for working in the COVID conditions!! My heart goes out to you.

Actually yes, it comes right on schedule on the Equinox. It helps me to prepare knowing that too.Kind of 'classic; isn't it? To cover all cycles, I should say the week of the Equinox.That covers them all.

I definitely get the fear quotient. My cycle will begin on Sept. 21st. I make sure that I have my gear all lined up and ready to go. Plenty of O2 on hand! Also, I stay on the D3 Regimen. Are you doing that? It really does help many of us!! I up my D intake to 15,000 as opposed to the normal 10,000/day. In addition, I make sure that I follow a set sleep schedule. Get up the same time daily, no matter what. The better armed that I am, the less stress I have. If you bust, then do that in advance. Put that info on a closed board - Members Only - and you will get a lot of replies from those who rely on that. Then, just breath deep, decide you have done all that you can and move on with life. Good Luck!

I am kind of lost Hosie. You made two posts about setting up a conference call for CHers, yet you are brand new and are not familiar with this site yet. Since they are duplicates, I will delete one for you. No, I do not know of a 'call group' in existence at this time. This is a 'support' group! Our function is to help people with CH and related headaches. Do you have CH? ECH or CCH? What do you take for it? It seems odd to join a group and immediately say that you 'want to start some type of support group'.

I had that after a long episode. It would not normalize. I went to the Eye Doctor and was told they could do nothing till I was CH free for two years. It made reading very hard and I love to read. It took several months, but by reading and lifting the book a bit higher every week or so, the muscles above the eye strengthened and brought the lid back up. I do have lovely wrinkles on that side of my forehead now. But, there is no droop to deal with. I have found the pupil constriction to be permanent. It is not a big deal except in low light. It will not expand to allow enough light in to see well. It is better than when in cycle though.

Tony, the member really needs a MRI!!! The symptoms are odd. I would definitely make that the number one priority for the member. It is an 'odd' set of symptoms and that makes the MRI more imperative in my mind. For me, a sinus infection has obvious signs of infection: nasal discharge that is green or yellow. One side may get worse than the other if I have been lying with that side down. Otherwise, no. I have not found bleeding to be part of a sinus infection. In addition, with a sinus infection, my whole head hurts, not one side. But, we do know that some things being wrong in the brain can cause pain and symptoms. We had a young Canadian member who was having 'mostly' cluster symptoms, but with some odd bits mixed in. He finally had the MRI after over a year and they found an aneurysm and operated. He was pain free post surgery. He had daily pain that fit CH best of all the headaches, but it was not CH. He also had some 'odd' symptoms. Being in the Canadian system, meant that it took over a year to get a MRI. Please encourage him/her to push for that MRI like they their life depended on it. If medical won't do that, then a scan might help show an issue and then they would agree to the MRI. The symptoms worry me. I want to know how this turns out in the end, so please give us an update if you get one. As a side note to this, a friend took her grown son in for hernia surgery last Friday. He had been complaining bitterly about the pain from the hernia. Doc said he should not be in that much pain and blew him off, but did schedule the surgery. When they went in, they found a tumor along with the hernia. Ergo, the excessive pain in the belly. The tumor was pushing on internal organs. Had they bothered with a scan, they would have found it sooner. And he would not have been left to suffer waiting for 'elective' surgery during the pandemic. Seeing what is or isn't inside is a good diagnostic tool to use!

How very interesting! My daughter has a sleep disorder. She may be up for 22 hours and then crash for 12. And it is not 'regular' in the time of day. She does have better days and worse days. In addition, she has Ocular Migraines without pain. But the visual disturbances are severe. My husband 'dreams' all night. I will push for a sleep study when we get out of the current mess. I sleep rather light. I am essentially in 'mommy' mode' for and old dog and and old cat. So I expect that. I do have periods when I hear nothing and my husband hears the critters. Sleep deprivation I seem to cope with fairly well. In cycle, I get two hours of sleep per 24 hours most days. That, combined with a 6-8 month cycle, should have made me comatose. But, I just got really short tempered and carried on. I did however inform all that there would be no Santa the next time.

Hi and welcome Nagroms! Mine taper off somewhat. The normal 4 per night becomes three and so on. I do not trust that I am out of cycle for a week with no hits. I do not try the beer test for a few more weeks. Big trigger! ATB!

Nice video! I have wondered about the REM part for a long time, as my Nocturnal hits begin within ten minutes of falling asleep. Which seems pretty early if attached to REM. However, I also have dreams that begin that soon too. I really want to be around when they figure CH out and have the answers we so desperately want!

That is a good read Pebbles!

So nice to read this Mit! Congratulations on getting it under control again!!

CHF, for many years I have done O2 breathing without benefit of O2. Think stuck in a store and trying to get out. Using the method I use with my O2 at home, I can hold off a hit for a while. With caffeine backup, I have aborted with this method. And I am referring to the hard exhale with a crunch and deep inhale portion. It really is a good skill to have for just about anywhere!

When on a Pred taper, my script says something like: Take 3 times a day for a week, then twice a day for a week, then once a day, and then 1/2 per day. I space them out. If I took 60mgs at once, I suspect I would be very wired. Well, I am wired on it, but that all at once would be hard for me to do. Perhaps check with the doc?

Hugs and best of luck for today and others too!! Have you had your D3 levels checked? That would give you an idea of how low you are at this time. No, you cannot take 50k daily without keeping up a rigorous testing of your D levels. How much are you taking on the days you don't take the 50k dose? Any? I take 10k per day, every day. In the past I have been able to go down to 5k due to sun exposure in summer. I am not doing that this year as I am not out in it as much due to heat intolerance. At the 10k /per day, my D3 stays at 100 -105. I don't recall the units at the moment. My PCP knows that I supplement heavily and has no issue with my levels being a bit high since my other labs are good. If I go without it for a couple of days, I get hit!