spiny

I would say yes. Not as quickly of course. Try an Energy Shot, cold, and slam it down on your way to the O2. You can hyperventilate on the way - force out the CO2 with major exhale and add a crunch. Like doing a breathing test if you have ever had one. I'm nocturnal as well. I wake up, with that 'What?' feeling. Then it starts to ramp and I head out for the caffeine and O2. Takes oh about 15 seconds to decide!!! And I have not had my O2 fail me yet. Take longer? Yes.

Here is a link to recommended doctors. https://clusterbusters.org/wp-content/uploads/2014/10/OUCH-DOCS-US-07-22-14-MA-MI.pdf None in Detroit, but other cities in Michigan are listed. Most PCP physicians are not very good with CH.

Out of date doctors make me nuts!!! He does not sound like a headache specialist. What dose of verap? 240mg per day? Short acting at least? Drat. Do you have low blood pressure? Verap does lower it, so that can be a problem.

After thought here Kris. Have you seen an Opthalomologist? I mean the real eye doctor, now the one who just fits glasses for you. It might be a good idea if your insurance will cover it. Since you have other issues with regard to your eyes, I would definitely suggest seeing one. I have Wet Macular Degeneration. It strikes the center of your visual field and blurs it out completely. Caused by an over growth of blood vessels in the macular. I have been seeing a Retinal Specialist for it for about two years now. Well, I went in one day with blurry spots at 10 and 12 on the clock in my CH eye. That eye had not suffered from WMD. He announced that that particular type of WMD comes with migraines!! Oh happy day. So, while it is billed as one thing, headaches can cause vision loss too. Sucks. So, I encourage you to see a specialist for you eye. You need it so badly!!! I would hate for that to get left by the wayside in your search. I had never heard of it until this summer. Hopefully you still have an eye specialist in your arsenal of doctors.

Hey scuba, Don't worry!!! Really. We just had the O2 guy here for my father-in-law. The house now sports a concentrator, my 90 and 60 tanks, and about 20 4 hour tanks for Dad outside. He dropped off the O2 in Use signs too. Those are to post in case of ANY fire. Not a fire from the O2. Just to let rescue know that there is O2 in the house. Their rule is no smoking within 6' of a tank or concentrator. Nothing else. I cook in the area where the whole thing is set up. With gas. Not an issue. The concern is that your clothes may get O2 saturated and when you flick your Bic, the flame will be bigger and you might mess up. That is all. Just secure any tanks so they can't fall over. A 60 welding tank does not even come with a cover for the fitting on top! Law says anything above 60 must be capped in case of accident. Mostly in transporting. You slam into another car, bust the valve off the top and now have a rocket in your truck. That is the hazard. I keep my tank in the office now, for privacy. It used to be in the bedroom and my hubby smoked while I huffed some times. O2 does not burn, but it feeds an existing fire. It is an accelerant. Use that puppy and smile!!

Some people report success at aborting a hit with stimulation. Mostly men if memory serves. Your reaction is what I would expect. Sort of been there and had that miserable experience. I headache that hits when you are otherwise occupied is most miserable and makes you want to cry or scream or both. Well, in my experience. Some people do experience 'side shifting' like you are describing. It is not really common, but it happens enough that we know that it is a possibility. Hopefully the neuro can get some of this sorted out for you tomorrow! The MRI is an important diagnostic tool that rules out other dangerous stuff. Needed. It is good to know that the D3 is helping. Who would have thought, right? That may get even better over the next few weeks. Please push for O2 from him. It is the Number One Abortive!!! Some neuro's who are not headache specialists do not know that. You need 15 to 25lpm of pure O2 with a non-rebreather mask. This is important for your pain relief. Push for it. After all, it is the only non-toxic abortive they can give you.

Hey Kris, That pain you describe is all part of the trigeminal nerve bungle. It enervates one side of you face and the front/top quarter of your head on that side. Any branch can become inflamed with CH. I call it an octopus as it controls and touches so many areas of the head and face and teeth. Sometimes doctors will diagnose Trigeminal Neuralgia when the nerve becomes inflamed, Others see it as an extension of CH. The nerve is aggravated and inflamed. Also the reason some feel the pain of CH mostly in the temple. Shadows are residual pain from a hit or pain preceding an attack. They can be just a nuisance or incapacitating to some degree. Caffeine is a help for shadows. So is ginger, in the form of tea or candy that contains the real thing. Fresh ginger is very hot! Both are better than Excedrin for shadows according to most.

Welcome Kris. Pile on the questions. What type of schedule do your hits come on? I mean, do you know when they will hit or is it more random? Have you O2 to abort with? Are you using a non-rebreather mask with your O2? What meds are a failure? Have you tried caffeine at the start of a hit? Many on this board have abandoned pharma for natural healing methods. Not that we don"t support those who find relief there, we do. Just so many of us have found that in the long run, they don't work. What makes you suspicious that you have something other than CH? It is possible of course. Just wondering why you suspect. A normal MRI is what is found in CH. No physical cause to be seen there. ATB

Nancy, I don't know of anyone who has tried Botox for the jaw/tooth pain. I have had that pain though. Or similar. It made my teeth feel like they didn't occlude properly anymore. I wound up sleeping on the sofa on my back for a week or more so that they did not hit during the night. Quite miserable. Prednisone is what got rid of the pain.

I want to extend my thanks to you for enrolling in the trial. It takes courage. They will give you real thing on the next go around if you got the placebo, right? Please say yes! I would be careful with getting the injections. Like use a doctor who is familiar with and treats CH. My neuro has offered them, but I don't trust that he has enough experience to do it. The nerve in the jaw is part of the trigeminal nerve that supplies feeling to the whole side of your face and head and ear. It has three main branches and numerous smaller ones. So, there is a lot going on. I know that Prednisone will calm or stop the pain if you take a taper pack for about 5 days. But I do not know if the trial will allow for that. Can you discuss this with the clinic doing the trial? They might be able to help you find a solution. ATB

Two 6mg injections per 24 hour period is the standard I think. It can be very bad for your health at higher doses. Like Heart Failure kind of bad. and it increases attacks and lengthens cycles too, as stated above. CHF has given you some very good pointers. Please check them out. We would love a little background info too if possible. Many of the members of this site are living the good life now without the Triptans in it.

The leak should be reported to the authorities. I don't think that you need to be exposed as the whistle blower either. That is an extremely unhealthy environment for anyone! I bet that OSHA would have a fit over it, as well as the health dept!! Sewage often = methane. Which you can't smell but it is deadly. Your head is aching from the contamination I think. Going outside is clearing the gas from your system so the headache dissipates.

I have had no adverse effects from welding O2. Been using it about 5-6 years. The tanks are heavier as they are steel, not aluminum. I would suggest getting two when you decide that the O2 is working for you. That way you never run out. As it was once explained to me: Welding O2 and tanks are as clean as medical tanks. No one wants bad welds! Especially on a high rise or other large building. Very costly to have a weld fail!!! The O2 comes out of the same tank no matter what it is going to be used for. Hauling a 40 or 60cf tank is not too bad. If you find that you want a larger tank, get a hand truck to strap it onto. Keeps it steady and safe and makes hauling a lot easier! Read the O2 page in the Clusterbuster Files and use it correctly for maximum benefit. Work it. Some claim that O2 does not work for them, but most of those are not using the proper breathing technique or they assume that the O2 will prevent the next hit from coming. It won't. But it will give you PF time in the interim if used correctly!! Good luck!!! You will be amazed. I have yet to read of any 'adverse' effects from using it. So, looking for that low rating likely won't help in this case.

With that O2, you need to do the post hit part. Just dial back the flow and breath normally for about 5 minutes after you pain is gone. It really helps! And, when using your O2, use it properly. Work it! Exhale with force to clear out the CO2 and inhale deeply. Hold a few seconds and repeat. Have the flow high enough to support hyperventilation if needed at the beginning when the pain is high. Adjust as needed. BTW:A hit an hour or two post O2 is not a 're-bound', it is a separate hit. A re-bound occurs within minutes of stopping the O2. Post hit breathing is the magic needed.

I would say do the full regimen. It seems to be the sweet spot. Best of luck. Emetrol is very good for nausea BTW. It helps me when nothing else does. Take a sip. Wait. Still nauseated in ten minutes? Sip again. Good stuff.

Ok. You mean the mask with the bag attached, right? I would suggest that the nausea and shadow were actually two different things going on. Just happenstance that they occurred together perhaps? It happens. Here's hoping that tomorrow the nausea is gone. Best of luck on your busting efforts!!

HI eliz, Please go to the Clusterbuster Files section of the board. It will give you info on the D3 regimen. That can be a huge help in lowering the severity and slowing the ramp up of any hits. Some have actually gone PF on that alone. The nausea is not something that I have seen referred to by many. Migraines will cause nausea. CH, not normally. A few report it. Do you have O2 and a non-rebreather mask? Do you have O2 to abort hits? Many use caffeine at the first sign of a hit or even a shadow and get very good relief. A lot of us will down some caffeine on the way to to the O2. ATB

Konaguy, You really need to see a doctor about this!!! If nothing else is available, go to the ER. They can refer you to a doctor and get the ball rolling on that doctors end. By yourself,it may take a month to get in. Please. See a doctor!! This spots and vertigo are a real concern.

I understand your confusion. You are going to need to see that neuro to get a firm diagnosis. I am not a doctor, so I cannot tell you which it is. But yes, CH will wake you from sound sleep. Have to you seen your PCP? Perhaps he/she is familiar enough with headaches to help you. Some are. At least he could check into the dizziness. I would be concerned about that aspect. Since your sister has migraines, I too would wonder about it. Have you discussed this with her? Perhaps she has some insight that would help you. Mostly, I think that you need to see your doctor first. Get checked out for the vertigo. Then move forward.

Hi Konaguy! There is no concrete answer to your question. They can start out sort of erratic and the cycle be short lived. Did the doctor put you on any medication for CH? If so, the medication may have kicked in for you. Did you actually have an appt with the specialist or just talk in passing? A correct diagnosis is really needed and helpful.Do you have any other symptoms with the headache? Runny eye or anything? You might want to read up on the D3 regimen in the Clusterbuster Files section of the board. It will give you the whole regimen that can reduce your pain. Some go pain free on it. It appears that you have done some reading since you are taking some of the vitamins, taking melatonin, and drinking a lot of water. If you could, give us some more information. Three nights PF may be the end or it may be a break. It is impossible to tell. CH tends to come at the same time of day each day for Cher's. Some get hit multiple times a day and some get PF days in cycle. The variables are many. Dizziness is not something that I have experienced from CH. Too much melatonin will leave me dizzy in the mornings.

Good quote Bob. Thanks for your input!

Yes. At times, the pain of CH can be much lower than other times. I don't have migraine, so I can't compare there. Sorry. Since starting the D3 regimen, my overall pain levels have really dropped. And ramp up is slower, so I have more time to treat a hit at a low level.

Yep, that is true on the pills. They take too darn long. Glad about the MRI. I understand your reluctance to up your caffeine intake when you do not normally drink much of it. I use coffee for my hits, or V8 Energy. Can't take the major energy ones at all. And I am not a soda drinker either. But, you might try V8 Energy. It works for me and comes in regular V8 flavor and in a juice base as well. I have found them to be very helpful. When I get sick of the juice ones, I return to the V8 one. And it actually has some vitamins in it. Not bad actually. I have also downed a V8 Energy at about 6 or 7pm if I anticipate a hit at 8pm. Seems to head them off at the pass. I am not sure that this would work in High Cycle, but might be worth a shot. Pred does give some people the jitters and interfere with sleep. But when you are exhausted from nocturnal hits, this should not be a problem. However. it should only be used as a short term fix. Nortriptyline has side effects that would prevent sleep, so that would have been a double whammy on getting any sleep. I wonder why he prescribed both? It is an antidepressant. A Pred taper would likely have affected your sleep only the first day when you take the most pills. Were you on a 5 day tape of it? I don't remember. I would add the Benadryl, two pills (adult dose) at bedtime. It will make you sleepy. But it really does seem to help.

Moderators and Admin (Thathurtsmyhead) are your fastest source. I can handle it and I am here almost every day. So, give me a shout out.

Have you started the D3 regimen yet? Benadryl added to it at night can help many. Also, have you tried taking Melatonin at night 9-25mg/night? It also can help. When I had the miserable burning, it was constant. After many months, it vanished. I am glad that you have the Neuro appt. A bit far out, but it is there. You need to have an MRI to make sure there are no other head issues. The most common meds are a short course of Prednisone and starting Verapamil. The Pred will give you quick relief while the Verap builds up in you system. Some require very high doses of Verap to attain PF status. He may think that you have one of the hemicrania 'look a likes'. They respond very well to indomethacin. Ch does not. The med easily rules out CH if it works for you. And push for O2 if he says CH. It is the best abortive available. It can be hard to get unfortunately. Aaaannd, the energy shots only work if taken at the very beginning of a hit. So if you are waiting for 15 minutes to take one, it may not work. Likely won't.