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ClusterBusters

lynn327

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lynn327 last won the day on January 12 2018

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About lynn327

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  1. lynn327

    Emigality

    I have been taking Emigality for 6 month. I know this sounds stupid but I sneezed 10 real hard sneezes that broughtvon the cluster headaches. The Emigality stopped the sneezes completly, but I still get the headaches. What I want to know is can you take a double dose of Emigality every month? I'm thinking that if a singel dose takes some of the symtoms away then would a double take some more away
  2. lynn327

    Vitamin d for cluster headaches

    I've been taking Verapamil SR 120 mg once daily for 4 weeks and hasn't helped at all. What dosage do you all take of this drug? I have an app today with the Neurologist. Should I ask him to up the dosage? Oxygen still making me light headed and dizzy and don't do anything for the headache.
  3. lynn327

    Vitamin d for cluster headaches

    So far The oxygen hasn't done anything.
  4. lynn327

    Vitamin d for cluster headaches

    Why is it when I stay on the oxygen for 15 minutes at 15 lpn do I feel shaky and dizzy and oh sooo cold?
  5. lynn327

    Vitamin d for cluster headaches

    They brought the concentrator to fill the tanks, because as often as he have to use it, they would have to come out every other day. I'm so tired of fighting with them to get what I need. I thought they would bring bigger tanks, and then they would bring more as I use it. But they won't do that. The bigger tank has a different regulator on it.
  6. lynn327

    Vitamin d for cluster headaches

    The 3 small tanks are 30"s tall and the larger one is 28"s tall but a lot bigger around. I also have another question. After I sneeze and Bam a hit, within seconds I get relief ( I call it a break) that last 10 to 15 minutes. Then bam it hits again. Any body experience this?
  7. lynn327

    Vitamin d for cluster headaches

    Since I don't get the nausea before the sneeze, I have no idea when I'm going to sneeze and get cluster. So my question is, will the oxygen work after the headache already started?
  8. lynn327

    Vitamin d for cluster headaches

    Yes I did increase the dosage of the D3 to 50,000 daily. Things are changing some as far as the Charlie horses and the nausea.
  9. lynn327

    Vitamin d for cluster headaches

    I also forgot to mention, the doctor gave Prometh 25mg for my nausea. Now instead of being nauseous for an hour or so before the sneeze, it's only seconds. Two improvements : The Magnesium took away the Charlie horses in my neck which is such a relief. And now the nausea is down to seconds instead of hours. but now I sneeze without warning and I get hit hard. I mentioned before, the sneeze is not just a normal sneeze, it sounds like I just blew my head off. It's so hard it scares the dog and she starts barking. I do sneeze normal some times, but I don't get a headache from a normal sneeze. Just weird!
  10. lynn327

    Vitamin d for cluster headaches

    In answer to CH Father. They brought 3 med size tanks, and 1 larger tank. Then they brought a concentrator along to fill the tanks when those get empty. So I don't have to go anywhere to fill them . I can do it at home. The larger tank is for an emergency. I have to keep it fill at all times in case we lose electric, and wouldn't be able to refill. I can also take it along in the car.
  11. lynn327

    Vitamin d for cluster headaches

    I've been taking Benadryl for the last 10 days. Nothing changed. I'm taking 15,000 D3 daily along with the other vitamins, for about 10 days now. I usually wake up with nausea & sneeze as soon as I open my eyes, then the headache. Around 12:00 another bout of nausea and then the sneeze and headache, Around 4:00 another then 7:00 and 9 another. Usually 5 daily and worse in the evening. The last 2 days I've only had 3 so maybe I'm making a turn around, but I have good days and bad before. I've only ever seen one other person that has these same symptoms. When I looked online at nauseous sneeze forum there was a girl on there that ask if any of those people had severe migraines with the nauseous sneeze. Must be quite rare. They say to use the oxygen as soon as you feel like you are going to have a headache. I'm not sure if that means when I get nauseous, but that can be an hour before the sneeze, unless I use the pepper to hurry it along, or do I wait till I sneeze and then use it?
  12. lynn327

    Vitamin d for cluster headaches

    I've been taking Benadryl for about 3 weeks now, but it don't seem to be helping the stomach. The doctor said you can't treat the stomach by itself because all of it is part of the migraine. So if I ca get rid of the headaches I will no longer be nauseous. Last 2 days have been better. Only 3 sneezes and headaches. Hopefully that's a good sign, but I've had some good days before. When this all started I had a 10 day remission period and then it started all over again. The sneezes and headache seem to be worse after 4 in the afternoon until bedtime. Do I stay on 15,000 D3 all the time or can I use less later?
  13. lynn327

    Vitamin d for cluster headaches

    Ok The oxygen supplier that brought us the concentrator came and picked it up and brought us tanks. 3 small tanks and one large emergency tank. When the small tanks get empty which is app 3 headaches each you hook it up to a machine to refill them. He called it a concentrator that takes the oxygen out of the room and then transfers it to the small tanks. Does this sound like what I need? He also told us that the highest this supplier as for flow rates goes is 15. I'm confused.The doctors script said 15/25 for 15 minutes. I've been on the Benadryl for 2 weeks. I'm taking 15,000 D3 daily for appr 8 days now. Headaches are random at 5 a day. No change yet Since the mag I didn't have no more neck cramps.
  14. lynn327

    Vitamin d for cluster headaches

    Ok The oxygen supplier that brought us the concentrator came and picked it up and brought us tanks. 3 small tanks and one large emergency tank. When the small tanks get empty which is app 3 headaches each you hook it up to a machine to refill them. He called it a concentrator that takes the oxygen out of the room and then transfers it to the small tanks. Does this sound like what I need? He also told us that the highest this supplier as for flow rates goes is 15. I'm confused.The doctors script said 15/25 for 15 minutes. Batch you are absolutely right, no more neck cramps. That problem solved. Now if I could just get rid of the nausea that causes the sneeze, then I would be good to go. I've tried so many different kinds of pills for nausea and nothing seems to work. Now that I've finally found a way to make myself sneeze (pepper) I can stop the nausea. Then the head is pounding. Doctor has me on 1250 mg of Depakote daily. Anyone else taking that for their headaches? He also gave me a nasal spray called Dihydroergotamine Mesylate. So far it is doing nothing but it will take time to see if it works. He says to call him in 2 weeks if it doesn't change for the better, and he will put me on Verapamil. One thing nice about this doctor,he is open to suggestions, so if I read something on here that has helped someone else he is willing try it.
  15. lynn327

    Vitamin d for cluster headaches

    Ok The oxygen supplier that brought us the concentrator came and picked it up and brought us tanks. 3 small tanks and one large emergency tank. When the small tanks get empty which is app 3 headaches each you hook it up to a machine to refill them. He called it a concentrator that takes the oxygen out of the room and then transfers it to the small tanks. Does this sound like what I need? He also told us that the highest this supplier as for flow rates goes is 15. I'm confused.The doctors script said 15/25 for 15 minutes.
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