spiny

I stay on it year round. And I recommend that others do the same. The first time I had my D3 checked, it was under 40 and that was after being in the sun all summer gardening! If you already have a welding set up, you must have a regulator on it. That would save the expense of buying one now. You can use a that one and just open it enough to supply the O2 you need. It does not matter how many liters per minute, it just matters that you can get enough O2 and adjust the flow. I sucked O2 through the torch tip covered with a wash cloth for months until I got set up in the house. ATB

Meds: That makes a lot of sense to me. We have members who are on a whole cocktail of drugs and still in pain. Which is ridiculous. But, with the pain being so bad, they continue the drugs. And your doctors office is horrible to make you come in monthly to get renewals!!!! You are not taking pain meds after all. What a racket. I use the V8 Energy drinks. Love them. I can't take energy drinks or shots - they hit that return to sender button in my tummy and out they go!! And I use caffeine pills too. Suggestion - I take caffeine preemptively. I expect a hit at 8pm, so I take caffeine at 6pm-7pm. No 8 o'clock hit. The 10:30pm one will still come, but I do get some sleep that way. You might try it. I am going to push you to get the vitamins for the D3 Regimen. Not expensive and very helpful. I think that you will be pleasantly surprised! It really does make this more bearable even if you don't get pain free from it - slower ramp up and lower intensity hits when they come. Well worth the effort!!!

Good to know that you are doing so well razor!!! Yes, our weather here is pretty sucky now. Hopefully this is the last big storm of winter today. I am ordering B1 from Amazon today with my other vitamins. The weather this year has definitely been a bear. I will let you know how it goes!!

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

Hi farm4all! Some people start out with short cycles 2 to 4 weeks. Over time, this cycle gets longer, but still leaves completely for several months. Others wind up with headaches every day or week or whatever 'their' schedule is. Sometimes they are 10's and then for a period may be 7's or 5's if that makes sense. What is your husband taking for his CH at this time? Has he had a scan to check for other issues in his head? A scan is always advisable to rule out other stuff. Does he see a Neuro? I would want the 'constant pain' checked out. Especially with the Lyme component. I know of no connection between CH and Lyme. but I don't know everything by a long shot! The D3 Regimen is great for many of us! Is that what you are referring to? It may take two weeks to see a real reduction in pain. ATB

Hi coolestnurse and welcome! Most people report 'shadows' as sort of -Here comes a hit. No. Actually. it never reached that level. They are described differently by different people. Rather like a low level hit. For me, it feels like the beginning of a hit that never materialized. Not a low level CH with the runny eye and all, just the beginning pains of a hit. It sounds like you have a very mixed bag of headaches! I find caffeine (energy drinks, coffee, etc) helps and so does ginger candy. Shadows can last all day sometimes. My pain can oscillate up and down depending on what I am doing. Lean over and pain goes up. That sort of thing. Of course this is my experience. What are you taking for your CH?

Shadows are low levels of Ch or Ch like pain. They put you on edge usually because you feel like a hit is coming, sort of ' Hey, I'm still here!' Many times the hit does not materialize, just the nagging 'shadow' pain.

That is terrific! And thank you for taking part in the study. That is soooo important.

Wonderful!! Please keep us posted.

I am not surprised that pain killers did not work. They normally don't work for CH! Melatonin does help many, but the dose needs to be higher, say 20 to 25 mg. The standard dose of 3mg will not do anything much. But higher doses can help. Try 9mg for starters if you are concerned about being groggy in the morning. The D3 really is pretty great for us. It is best to get your D3 levels checked by a blood test first if possible. If you can't do that you can start it without. Just be sure to take all the co-factors. The other ingredients. Yes, people will make comments like 'Take an aspirin' or some other over the counter pill for mild pain is a very common statement. It is pretty upsetting to us, but they don't know. They do not understand that even potent pain killers will not work. Alternative treatments are discussed on the closed boards 'Share your busting stories' and 'Theory and Implementation.' Only members have access to those. Drinking some caffeine - an Energy Drink, coffee, etc - can help at the very beginning of an attack. O2 does not help unless used properly with the right mask. I am so sorry that it is not available to you. Try putting your feet in very hot water, as hot as you can stand, for relief. Keep the water hot! I will sit in it and just keep adding water to the tub as needed. Breathing cold air helps many. If it is cold, go outside and exhale fully, then inhale deeply. Repeat. When the pain drops then breath normally for a few minutes before going back inside. We have members world wide. Where are you located? We may have a member or two from there who could be more helpful with your local situation. And in some places Truffles are legal. They will work too.

Hey Bilal! I only have one add to put out there. It sounds like you are on Extended Release Verap - taken twice a day. The older short acting variety has been shown to provide better relief. You can tailor the taking to when you normally get 'hit'. You just want to keep them spaced out. Say 4 hours between. I used to take mine at noon, 5pm, and 9pm. Most of my hits are nocturnal, so I took most of my preventative later in the day. The D3 Regimen is very effective for many and not expensive. Just over the counter vitamins. You would likely see some results in about two weeks. It is really good at reducing the severity of hits and slowing ramp up time. Some patients have gone pain free with just these vitamins.

Ah, the squeals of children! They can cause a headache on an inside day for anyone I think. So, why shouldn't they aggravate or bring on a hit? I had a hearing test at work a few years ago. 'You have a lot of hearing loss.' Ah, in what frequency range? 'In the high frequency range.' Like sounds of little kids squealing? 'Yes.' That's cool. I love kids, but not those high pitched squeals they can make when playing!

Hi Eli! There is no cure, to my knowledge. Some people are granted long remissions, but we don't know why that happens either.By 'long', I mean ten years sometimes. So, there is that. Read thru the Forum and I suggest that you spend some time on the numbered threads in the Clusterbuster Section of the board. It will explain a lot. What have you taken for your CH so far? Besides Imigran. Is that in a pill or injectable form? I strongly suggest that you read some of the info on the D3 Regimen. It is amazing how much a few vitamins can help!!! All are over the counter vitamins in the States. ATB

Hang in there Dm! Good to know that you are going to a Headache Specialist!!!! Looking forward to an update on that.

Yes I do. For me it is when I go down to 20mg/day. For some it is 10mg/day. Are you on a preventative like Verapamil? Pred is normally used to get you PF while the Verap builds up in your system and starts working. Perhaps your doctor just started the Pred to get you to a specialist?

Hey Dm! I can think of two things that may help: Melatonin taken in the 20-25 mg range at bedtime helps many with CH and can help with insomnia. And Benadryl is part of the D3 Regimen and a good sleep aid as well. They might help. How long are you to stay at 60mg? It is normally used as a 'bridging' med to get you pain free while something like Verapamil builds up in your system. However if a prescription med is not helping I am not sure either would benefit you. Pred is very helpful for short bursts, but it can really bother some people. Let your neuro know how it affects you! ATB

PM Batch. The loading dose is 50,000 units. BUT, Batch is the expert. He is most helpful and will answer your PM when he gets it. I suggest you get your D levels checked and that will determine how many days to do loading doses. I think that you could do one 50,000 dose one day a week and the standard to the rest of the week with no issue. But, you want the test before loading for the best solution. You may have to pay for it yourself, as you had a test recently. Or your doctor could order it to see where you stand now. Insurance would likely pay for that. ATB

Interesting Ricardo. Yes, they are shooting for the branch of the trigeminal that enervates the upper or lower teeth. That would be the maxillary or mandibular branch. Thanks for the info on Nitrous!! I had wanted to try that myself, but my dentist does not use it.

Hi BrainFreeze! It is usually about two weeks for most. Some start to feel relief sooner. With your levels so low, loading doses likely would help. Many have gone PF with just the D3 Regimen! Others get reduction in pain levels and or a slower ramp up of pain. It is common for your head to kick back in as you lower the dose of Pred. it is most often used as a 'bridging' medication. It gives you relief while another med builds up in your system. Long term use is really bad for your hips and not recommended.

Hey all. I recently had to go in for an upper and power scope at the hospital. I informed the anesthesiologist of my clusters and requested O2 at 15lpm with a non-rebreather mask available when I woke up. They had been informed that if I sat up and held my head do not give me narcotics or force me to lie down. Post procedure, I woke with a hit, sat straight up and saw a lovely tank of O2 not 10 feet away. The nurse was at my side with the mask and told me it was set at 15lpm as requested. About five minutes later I stuck a thumb in the air -my signal to drop to .5lpm. They were awesome. Post scope input was they had to put me completely under as I was thrashing around and they had to use full anesthesia, not sedation. Hmmm. Well, when I returned for surgery, it was a different anesthesiologist. I gave him the run down. He checked the records from the scope and yep, got the picture. I told him that opioids would not help at all. 'I see that!'. O2 was waiting for me. They were smart and attentive!!! So, perhaps this might help someone facing a procedure or surgery. They really don't understand that mega pain meds won't help! A little explanation went a long way for me and might for you. ATB

1. If he does not 'know' he listens and learns. There is the computer, please use it. Here I am, please listen. 2. Lack of caring or willingness to learn what he is treating and the best treatments for it. Hey Jon,cut some slack!!! Not everyone is here daily. I have been MIA due to surgery. And I thank you for being here!!!

Verap: Yes, I took it for two plus years. My dentist talked me out of taking it due to hyperplasia. Ok. It never worked again. During those two years I did not get a cycle. O2: Yep, insurance will fight hard to deny it. Many use welders O2 and it is great. Just get the right mask, enough flow and proper method. The Eel: I call it an octopus when it does this! It will and can light every branch of the trigeminal nerve and nerve pain is pretty darn hot. Look at a pic of that big nerve and you will see it's path. It runs the gamut from a red hot worm crawling around my eyeball to my teeth killing me. It can set every hair folical sp) on fire for months. To me, it is a red hot poker being shoved into my temple while my head is held in a vice. Then everything goes south. The dragon rules till I grab some caffeine and O2. You can post about busting on the closed boards - Share your Busting Stories and Theory and Implementation. Privacy!

Hey Adam! Some CHer's get a hot stabbing pain in their temple, not eye, that goes completely nuts. The 'shadows' from this would be a sore temple. It is still CH. So, I would not recommend a drink yet. If alcohol is your only trigger, you are most lucky!!! People get hit due to stress - either when stressed or post stress. Some have called it a 'stress relief' CH. As for booze, the least offensive seems to be Vodka. The worst offender seems to be beer. Of course you could take a drink and see if you get hit. Then you know that temple pain is actually CH.

I can think of several people who have had long remissions. Then, the dragon returns and the fight begins anew. I had a nice long remission once. Then they returned with a vengeance. They are still with me, but under control now.

That is not sick. It is human. No one wants to be alone, in pain, and nobody 'gets' it.