spiny

Ajax, a face plant in snow can help too!!! Truly! You are in the States, so yes, get on the D3 Regimen ASAP! No, nobody likes to take a fistful of pills. But if I can toss back a handful to avoid the hell of CH, I do it!! You need your calcium and PTH along with your D3 to be within proper parameters. My D3 stays at about 103 to 105 every blood draw. A tad high, but my doc knows why and has no issue as long as the others are in spec. Forgot before, but yes, tinnitus gets louder for me too. Glare......

Hey Ajax! I would definitely try some caffeine once or twice at the first sign of a hit. I think that you might be surprised at the result. I use just regular coffee as the energy drinks do not agree with me. You might want to start the D3 Regimen. Here is the most basic form of it: https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Get your bloodwork done or obtain a copy of your last blood panel. You want your D3 level to be at or above about 80ng/ml. Many of us use welding O2 and just buy the O2 from the local supplier for the welders. Don't say it is for you to breathe. Get that with a Cluster Mask and you can set up a great system for aborting your hits. The key is the mask and a regulator that goes high enough for your needs. If you try a medical O2 supplier, they will want a script!!!! The welding supplier will not. For rinse and repeat nights, you might find it easier to rest in a recliner. Lean back, but keep your head above your heart. I use a pile of pillows for support. Many chronics use the recliner as their bed. It seems to mitigate some hits and does help you wake faster with a fresh hit so that you can treat it quickly and kill if more easily. I prefer to sit up for hours pain free over waking in 15 minutes with a hit from being prone. And after the first night or two, I can sleep in the chair pretty easily, not as refreshing perhaps, but much better than all night hit after hit. They will roll back to my standard 4 per night if I use the recliner, otherwise I get hit within 15 minutes of lying back down and falling asleep. Inhaling cold air helps a lot of people. Go outside or turn on the ac in the car and stick your nose up to the vent of blasting cold air. It can help a lot for some. I used very hot water in the tub. Shallow to start. Sit down and put a cool washcloth on my head. Add to the water to keep it roaring hot. This would shorten a hit dramatically for me. Thirty or forty minutes vs just over two hours. Some will put an ice cube in their mouth and hold it against the soft palate on their CH side to attain relief. With all of these abortives, the next hit is still going to come. Using a chair and the D3 are the two things I mentioned that will actually help to stop the coming hits. D3 can prevent a cycle too. ATB!

Bosco, I get a huge 'cluster knot' where my noggin joins my neck on my CH side that is very painful. It cannot be massaged out either. If it pops up, hell is outside the door and coming in soon. Then I have to sleep on the side of the pillow - as in stand it up like a wall and put the edge carefully on that 'It don't hurt here!!' spot to sleep in the bed. Once the cycle is in full swing, I give up the bed for the Barca Lounger! Not to worry though, you are still 'special'!!!

Hey Joe! I was slammed twice last week in one day. It had been a long time since that had happened because of the D3 Regimen. I doubled my D3 intake from 10k/day to 20k/day. In 24 hours, I was back to pf status. And the beast returned to slumber. If memory serves, D3 can be hard to get some places over there, but perhaps your multi is easier to obtain. Perhaps not the one you have been taking, but another brand to tide you over? I would try that if it is possible. Then order extra when you do order with the craziness in the world now. ATB! If you want to discuss busting, start a new thread and put it in Theory and Implementation or Share your Busting Stories as they are both private files. You will receive a lot of help there too!!

So true. It is well known for it's ability to morph and confuse/anger us. Makes it doubly hard to stay ahead or be mentally prepared for the changes it will throw out. Which is why you see so many trying to stay at least even with the changes! Getting out in front is truly a miracle. Sort of reminds me of how many scientists will attack a huge health problem for the world, they seem to go at it from many angles at once. I feel that is what our community does with CH. You may get a lot of duds, but always, something will stick and it mostly makes you scratch your head and wonder. Then the hole digging begins to try to figure out why or how X truly helps.

Yes. I use it for shadowing. And to hold off a possible hit when changing elevation. It may not prevent the hit, but it will help hold it off for a bit. That is important when traveling on a two lane road up a mountain. There are many ways to take it, easy to transport, and basically no questions asked if you pop a piece in your mouth on the way home Well, expect for 'May I have a piece?' Isn't it amazing that something so simple as ginger can be a huge help for a Cher? It is to me. It seems that the more we know, the more we find that Mother Nature provides pretty darn well for us as a group: MM, seeds, ginger, O2, caffeine. No pharma there.

Hi Nutcluster! That would be horrible I suspect. I have not experienced this myself, but had a boyfriend decades ago who had a hard time with sleep paralysis - wake up but his body was still in that sleep mode with the paralysis. It sucks all by itself. Is your Verap to be taken twice or three times per day? The short acting three per day works better for CH. ATB!

Ginger, in any form, can help your CH. I use ginger chews for shadows. They are pure ginger with sugar on the outside. You can use pills, candy, tea, any will help. The higher the ginger content, the better! Helps with hits and shadows.

I found that taking the verap at the times I was going to get hit worked better for me. As a nocturnal, I took mine afternoon, evening and midnight. It helped better that way. I do not understand how a medico would prescribe once a day verap????? Extended Release is twice a day and Short is three! IE: You are taking it in the am when you don't normally get hit, correct?

I wonder about that script Empires. Long acting or extended relief is twice a day, Short acting - better for us type - is three times a day. Are you taking one pill once a day? Was it prescribed by a Neuro or Headache Specialist? Is it one 120mg pill?

Bosco, the Ivermectin is helping? Did your doctor prescribe it? Some will and some won't.

Don't you have to use the Epilepsy without seizures or something similar to get SSI? It seems like that is what I read a long time ago.

https://www.axonoptics.com › 6-types-of-tinted-glasses-and-their-benefits This site has many and tells you what each lens color is supposed to do. Anyone wanting to try it can buy them I think. The rose/pink is for migraine. Was developed for migraine too I think.

Smack him!!!!!! Tell him it is very simple - this stuff will help him get better faster! Just kidding Bosco, you have to do it the way that works best for you and him. But I would smack mine for that. Beats being sick or having someone in the hospital give it to you. Just sayin............ Also what many hospitals are giving now to their Covid patients. You, feel better soon! It takes awhile to get fully over. My sons' family just had it and his face is about back to 'normal' after three weeks. While they were taking the vitamins, his neighbors showed up with a gift box holding all of those and new small toys for his two girls. His taste buds are good to go now! He had it the worst. You know, the luck of the last one to get it is to get it for longer - cold, flu, Covid!

I am so sorry to read this Bosco! Ziinc = 50mg/day C = 2000mg/day D = 10K/day at least. Likely a 50k boost or two during the week will not hurt, but help. Quercetin = What you normally take Both of you should be taking these guys. If not Quercetin, then Benadryl will work great too. Some hospitals are using this protocol now from the little that I have heard and read over the last year. They know that D and Zinc are a huge help. I pray that you both get over it soon! Hugs!!!

Yuck! Are you going to give it up? It appears that you are only getting negative results.

Hi Jara! If you go to the Clusterbuster Files, you will find a link titled Playing Well with Others. That will give you a list medications known or suspected as blockers of MM. Triptans are all in there as blockers. so, yes, you have to stay away from it for 5 days prior to busting. Verapamil is also listed there, but we have found that a person taking a low dose, say up to 320mg/day can still bust successfully. If you wish to pursue that bit, then please put it in the private boards: Share your busting stories or Theory and Implementation.

That is pretty wretched Cast Iron!!! Have you tried hitting an Energy drink when your hit first starts? Like on your way to the O2? Many do that and it helps a lot. I use plain cold coffee personally and it works for me. It often helps with the O2 aborting the hit. I will let someone with experience chime in on the triptans. I never could take them. I can see why you avoid the D too since your value has not dropped. Drat.

Hi Billyx! Welcome! Very glad that you found us!!! Additionally, I am sorry that you have CH. Not necessarily for CH, but a lot of folks use a blue light blocker for devices to prevent getting headaches from their devices. The refresh rate seems to have a lot to do with how much it bothers your head to look at them. I get to where I cannot tolerate a computer or phone, but the TV is fine. Have you had a MRI? It is strongly suggested with a CH diagnosis to rule out other 'bad' stuff going on in your noggin. With the cyst, I think this is important to do if you have not had one since your diagnosis. Most, if not all CHers, get at least one done early in their journey. As for shadows, I agree with the ginger and use it too. Caffeine is a huge help for many - Energy Drink or Shot or plain coffee all can help. I strongly suggest looking into the D3 Rgimen. The first iteration is here: https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 ATB!!!

My top go-to for several years!!!!! Screaming hot and kept that way till I got out too. Worked.

Interesting to me as mine began about 3 months post concussion too. I was a mlid chronic with daily hits, or almost daily.Two years later,when it would get to be too much, I would head to the ER for some medication. They would look in the eye, seeing swelling that was indicated by the flattening or bulging in of the back of my eyeball, give me a good shot that would help me escape by sleeping as long as I promised to see my doctor or a neuro the next week. They had no idea what was wrong.

For CH, I think that this is the best place to be for support and help and new news!!! I might be a little prejudiced though! Hang out. Learn and contribute. We all benefit!

I cannot find any information saying that the iris lets light into the eye and onto the retina. My understanding is it is the pupil that controls the amount of light that enters the eye and the iris controls the pupil. The cornea refracts the light into the eye via the pupil and then it is focused on the retina. Which is why Cataracts cause blurred vision. I know that in cycle, my pupil will not properly dilate. It stays constricted to some degree. The docs always look into your eyes with their bright light back and forth, but that is only to check how they react to the light. I walked over and faced corner in the exam room and had my Neuro look at my eyes there to convince him that I do indeed get Horners with my CH. My CH pupil will not dilate in the dark when I am in cycle. Now that pupil is permanently constricted to a tiny degree. I had fought so hard to lift that eyelid, that he thought I was full of it when I told him that I did have Horners. Now blue eyes contain LESS Melatonin that brown or hazel eyes, that is fact. The highest levels of Melatonin cause brown eyes. The less Melatonin in the iris, the lighter the iris. Ergo, blue comes into play. And your DNA determines your eye color. I am all up for new facts, but I don't think that I am wrong on this bit.

Sue, I had them and wore them for ~two years. After that, I was no longer in an environment with those stupid lights. I went into remission a good 3-4 years later. The drugs that I was prescribed made drinking and all that off limits, so no, no drugs or anything for the 70's. I also had a script for Thorazine for my nocturnal hits for two years. Pretty shocking today. My doctors, at that time, felt that my headaches were caused by a concussion. They did not even think they were migraines. That diagnosis came a few years later. when I moved to another state and went to the ER. It is rather complicated actually, but that should give you enough information to work with. Then came the glasses.

No problem Bosco. I hope that it helped a bit. There is so much that we don't realize or connect till years later, you know? It took knowing that pregnancy can stop a Chronic dead in its' tracks to piece the bits together many years later. I had to fight for my diagnosis with a Neuro when I got a proper cycle too! Actually had to take my husband to get the guy off of the Migraine train! It was not encouraging! But he and I get along fine now. I go once a year and get my one script filled and push him to get patients on the D3 Regimen. He will flip over the new studies using MM!!!! I can't wait!