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Welcome sontye! I see that CHF has given you a great start with suggestions. One I will add is that since you are nocturnal, as am I , sleeping in a recliner helps. Just grab some pillows and crank back the recliner till you are comfy. Keep your head above your heart. Will you still get hit? Maybe. Will it be as bad? Not likely - you wake sooner. Others will put pillows on a table and use that method. Yes, breathing exercises can also help. Especially if you are caught out in public. The main idea is to get rid of the NO2 in your lungs. So, exhale fully, like a breathing test with a crunch at end it possible. Then inhale deep and hold that for a bit. Up to even 30 seconds. Then big exhale and repeat. Then just breath deep in and out rhythmically for the duration of the pain or until you to to a safe place. Cold air does work best. If you go with energy shots, you can always have some in the car. Same with coffee. Works best if taken at the very beginning. I strongly suggest that you read up on the D3 Regimen and try it. Just healthy vitamins and it can really make a huge difference. Lower pain level, shorter hits, or complete remission. Not bad at all. I am the 'lady' (term used rather loosely) of the house too. My husband was determined to 'help' for the first year. That was rough. He finally understood that he was not able to help in any way except to get out of my way. Don't ask, don't offer, don't do anything that requires a response from me - it all makes the pain worse. Just make sure that there is O2 in my tank!!! I use welding O2 BTW. No, no, no says insurance. So, you go around and get the best abortive available at you local welding supply. Yes, it is safe. Yes, it is worrisome when you feel that you are letting your family down. But you are not! Look at it this way - You are appreciative that they can and do help out. They are glad to have something that they can do to help ease your suffering. It strengthens a lot of families when they work together with this mess. I am so happy to read that they are supportive!!! Some are not. There is no way for them to know our pain and I am glad they do not. Just be my support group. Sounds like a great little group at your house! ATB

sontye, I gotta ask a few questions. Did you stop taking verapamil because it wasn't helping, or because of side effects? (Because it often doesn't help much until you get to considerably higher levels than most doctors prescribe, but it can help a lot when the levels are right.) Are you willing to try the vitamin D3 regimen that has helped very large numbers of people with CH? Helps prevent cycles, prevent attacks, and make attacks less severe. https://clusterbusters.org/forums/topic/1308-d3-regimen/ If you're not willing to fight your insurance for O2 (federally funded insurance, such as Medicare and Medicaid won't fund it), are you able/willing to set up a system based on welding oxygen? Having O2 is such game-changer. Have you ever used injectable or nasal-spray sumatriptan? Have you looked at the materials on busting in the numbered files in the ClusterBuster Files section of this board? Not for everyone, but often makes a very big difference for shortening cycles? Here's some info about a bunch of things people do: Caffeine/taurine. For some people, caffeine alone can help to stop an attack or lessen the severity of the attack. Some folks keep strong coffee on hand for that purpose. Some folks use caffeine pills. Because some ingredient in energy beverages in addition to caffeine is believed to help with attacks (believed to be taurine), many people use those. I recommend energy shots (such as 5-Hour Energy) at first sign of an attack. Shots are quick to drink down and they have more caffeine than energy drinks, such as RedBull, that are much larger. Many people say the shots work best for them when they are as cold as possible. For many people, energy shots/drinks don’t keep them up even if they drink them at night. Some people take taurine pills along with caffeine pills. In addition to all the “standard” energy beverages, some people like “V-8+Energy” drinks: https://www.campbells.com/v8/products/ There is a list here of the amount of caffeine in different beverages: https://www.caffeineinformer.com/the-caffeine-database “Brain freeze.” You can drink ice water through a straw aimed at the roof of your mouth, with the objective of creating “brain freeze,” or hold something cold, such as frozen juice concentrate, against the roof of your mouth. Melatonin at bedtime. Melatonin is depleted in people with CH during their cycles. Some people find that it helps to supplement it. You could start with about 10mg, and go up or down as appropriate. Some people get into the high 20mgs, or even low 30s, before they reach a level that helps. Needless to say, you have to find what works without making you dysfunctionally groggy. Not wise to take both melatonin and Benadryl at night (see Benadryl entry below). Feet in very hot bathtub. There’s a theory that this moves blood from your head to other parts of your body. Some people find that putting their hands in very hot water also has an effect on attacks. People have reported that going from feet in a hot bathtub to a cool room and back to the hot bathtub helps the effect. Some people don’t just stand in a very hot bath but will sit or lay in the hot water. Ice packs. Help some people. Benadryl. Allergy-related conditions seem to flare up CH. Some people take Benadryl, 25 mg every 4 hours and 50 mg at night. As tolerated. Not at night if you are also using melatonin. Probably if you are trying Benadryl, you might skip the melatonin. Other anti-allergy medicines, such as Claritin, seem to help some people. Cold air. One study showed that inhaling cold air was nearly as effective as using oxygen. Air conditioning vents in the home or the car are good for this. If it’s cold outside where you are, you could try that. Vigorous exercise. Some people find that vigorous exercise (running; doing jumping jacks, etc.) will stop or slow down a CH attack. Lime/baking soda. One fellow said that this helped his attacks: the juice of a lime or two along with a teaspoon of baking soda in a cup of filtered (non-tap) water.

Hi, I currently am medication free outside of going to go get botox injections on my own accord. I tried oxygen and it was not prescribed properly and my insurance also will not cover for me to have it. I randomly decided to try botox and for what it's worth it does dull the pain down to a 9 from an "oh my god just knock me out" level. My bouts range from 30 minutes to 3 1/2 hours (or more) the later includes vomiting and wanting to shoot myself (which I wouldn't do but if someone would knock me out I would be grateful at that point). I was on Verapamil (with hesitation from the Doc) and prednisone (which turned my beautiful smile a lovely tinge of yellow). I was also put on a lot of other things, went through CT's, MRI's, etc. etc. prior to the docs finally figuring out that I had CH. I like my beer so when I get my bouts I have to say goodbye to that for at least 6 weeks and then I get a break of about 8 weeks and then they are back on again. I guess I just wanted to reach out, for the first time, to someone who understands my anxiety, and confusion. I feel bad for my family members that have to see me endure this. I am a woman so I always feel like I am a burden when this is happening (okay, I am not boohooing here I'm just old fashioned and I take care of most of the family, chores, etc. with a very big smile because it is what I love to do) and I feel I am supposed to be stronger than this "headache", which kicks my a** literally. I am exhausted afterwards and can't get up to make dinner or do my normal thing. I feel like I've been run over by a truck for half the day the next day. When I first got these it was from nowhere. I have had them now a little over 4 years and am somewhat used to them and my pattern. They have become the norm for everyone around me. I say "ok bustin' out" and off I go to some spot to endure whatever it decides to provide (my pain level is usually never lower than an 8-9). I am a very outdoor person and very social so often times I am not in the comfort of my own home. I choose not to allow CH to stop me except for the minutes/hours it takes to get through one. I am also a night CH sufferer, usually about 30 minutes after I go to sleep but there are a few day time episodes here and there (scared the crud out of my co-workers one afternoon, that was embarrassing!!!). I have become very good at breathing exercises, which help a lot in the beginning until it gets in my teeth then I am a wreck. I guess where I am going here is thanks for letting me vent. Everyone around me is hugely supportive but no one knows what this is and how much it hurts and how anxious it makes you knowing when whatever o'clock rolls around and here we go. Anyways, I digress...here's wishing you pain free days and less anxious times.

sontye, You can find all sides to the question of how pure welding O2 is compared to medical O2, from it's purer to it's the same stuff to it's not as pure. I only know that maybe 15 - 20 percent of people with CH use welding O2, and of the people we know of directly, none has reported having an issue. My daughter (the person in my family with CH) has used it for almost ten years now.

An initial welding oxygen setup will cost you ~$250, depending on what size tank you get and what you are charged for it (prices vary a lot from place to place). You'll want to buy a mask (<$10 to about $30, depending on whether you get a standard non-breather mask or the mask that's made for CH) and a regulator (~$50), and you need a big adjustable wrench. You get the tank from any welding supply store (you can find the stores through google). We can walk you through more specifics (where to get a mask and regulator; what to say and not say when buying the tank). Let us know if you want more info. Prednisone for CH is usually prescribed as a taper, where you start with a fairly high dose (could be up to 60mg/day, but probably not that high in your case) and then take lower doses over the course of two or three weeks. That sounds to me like a lot of $ for verapamil + pred. O2 can add up.

Batch, I will up my intake of vitamin D to 25k UI, blood test scheduled for June and I'll check on my serum calcium level, thx Joy, I'm still getting relief from the B1, the deep sleep seems to be repair my system, I changed my dose back to 300 mg in the am, and 100 to 200 mg as needed in the afternoon, it's easier on my system, the weather related shadows are effecting me or I now notice them more. I add 100 mg B1 wait 30 minutes, this seems to work, highest dose has been 700 mg daily, I average 400 mg of B1. D3 is a life saver for me, I don't think I will ever stop it.