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  1. Hello! I have not been on this forum for a over a year. I have had cluster headaches for most of my life. When I first started suffering, I was so young and my headaches barely lasted a week and came around Memorial Day and Christmas. Now my cycles can last for 2 to 3 months, but still start around the same time of year. Luckily, most of mine happen during the night or early in the morning, so I have always been able to use Oxygen to abort my headaches. Recently, I found out I was expecting, and I just wanted to gather any information I can. I've read that sometimes CH stop during pregnancy, but I've been waking up with a headache the last few nights. The main thing I wanted to figure out is whether Oxygen is still safe to use during pregnancy? Any information you could provide me would greatly ease my mind. Thank you so much! Grace
  2. Grace


    Looking online it seems I have a type E tank. I've ordered the mask. Thank you for the link.
  3. Grace


    I did read over the oxygen page. It was very helpful, thank you. I believe I have the right size tank. I just think I need to upgrade my parts maybe? to increase my air flow? I also need to get a mask, because right now I have a cannula. My pain is only on one-side although I do experience the sensitivity to light and the nausea.
  4. Grace


    Thank you so much for all your helpful feedback. I'm from New Jersey and moving back there at the end August. For the past couple of years, I've been living in Jacksonville. I was told that the neurologist I was seeing at Mayoclinic, was one of the best. However, every time I start a cluster, he refuses to answer my phone calls and just prescribes me predisone. He basically swears by it and verapmil. I had to go about getting the oxygen on my own, which is why I guess I ended up getting the wrong tank. I didn't know you could get the wrong tank. The man that dropped it off was the one who told me which one I needed. My tank only goes up to 10 ml. Clearly, I need all the help I can get. Luckily I found you guys, and I've already learned so much! I can't thank you enough. I'm hoping to go to the headache specialist at Jefferson when I get back to NJ, but mostly I'm really interested in trying the D3 regimen. And getting the right oxygen tank of course. I didn't realize light sensitivity wasn't typical. My eyes lose focus during an attack, and any light I encounter enhances my pain. I also get sick to my stomach during the attack, which I've been told also isn't typical. As for caffeine being a trigger, I guess theres a chance its not. I'm not a big caffeine drinker. I'm basing this assumption on one really bad attack I had after I had a big coffee. I blamed the coffee for the attack since it wasn't typical for me to drink any caffeine. I tend to cast many things as triggers, even though they could be coincidences. Fear of clusters is not fun.
  5. Grace


    I'm a female. I'm 25 and I've been suffering from clusters for as long as I can remember. Even as a child I would get them for a week at a time once a year. Now the pain is getting worse and they're getting longer in duration. Usually the cluster occurs each summer, but I have had some in the winter as well. I get one at least one a year. I'm currently in a cluster. The pain comes every other day, and last for about a 90 minutes. I can barely stand it. My eyelid droops, I get sick to my stomach, my eyes go crazy. Its like knives are stabbing me at the temples. Light hurts, sound hurts, smells hurts me. Every thing seems like a trigger to me; alcohol, smoke, caffeine, heat, stress, too much sleep, too little sleep, so many foods. I am on verapamil, topiramate, and then I begin predisone at 60mg and taper off when the cluster begins. I also have an oxygen tank. The oxygen doesn't seem to helping, maybe i'm doing it wrong. The pain is unbearable. I ended up in the ER yesterday and they gave me a benadryl cocktail, but by the time the doctor saw me, the cluster was already over. I guess I am looking for recommendations on anything. I never heard or considered drinking caffeine since it's such a trigger for me, but I'm willing to try drinking a caffeine shot next time. I'm willing to try anything. Maybe someone can offer me a suggestion about the oxygen as well. I use about 5 liters per minute when the pain starts for about 20 minutes. The pain just continues with such intensity that it feels useless. I see a neurologist at the mayo clinic and he has never said anything about injectable sumatriptan. However, this is something else I'd like to look into. I'm worried about side effects, but mostly I just want to find relief. I wonder why he never mentioned or recommended this to me in the past. Any help you can offer, will be much appreciated !!
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