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  1. Thank you all so much for your answers. I do use oxygen and have a tank in my bedroom. Like Spiny - almost all of my attacks happen at night as well. Right now I take 1 in the morning, 1 in the afternoon, and 1 right before bed; but had considered changing it to one in the morning, one before bed, and one in the middle of the night. Like previously stated - it does not stop them, but does make them more sparse and less severe. The only reason that I even started the meds was because I have been having CH for 8 years and decided that I needed a proper diagnosis for my medical records and to get
  2. So the saga continues lol. I had my full brain MRI and it came back normal (no surprise there). My neurologist had put me on indomethacin to rule out CPH headaches (a different form of TAC headache) and it ended up giving me a 12 hour long migraine. So she took me off of that. Now we are back to cluster headaches (obviously what I have suspected all along) so she put me on verapamil. I take the lowest dose 3 times a day because I already have low blood pressure. I have been taking it for about 3 weeks now, and though it has given me some relief (I have managed to sleep through about half of th
  3. I am going to try to get my neurologist to convince my insurance to pay for my o2 and if not I will have to switch to wielding oxygen. I can't keep going without it - that's for sure. I haven't had any in almost 2 weeks and it's taken its toll on how I feel as a whole. I just had an attack that had me screaming and I can't decide if it was because it was a particularly bad one, or if it's because I am just so fed up with having them today (it has been a heavy attack day for me). I did talk to my doctor about switching to the injections and he had no problem changing the rx but I have to wait u
  4. My insurance would only pay for 12 doses a month.. which is 6 days worth. Not very helpful. Sumatriptan is considered an off label medication for cluster headaches. The medication information pamphlet that comes with it clearly states that it is not for cluster headache use and hasn't been approved for cluster headache use. So medically it is considered a standard treatment, but to the pharmacutical company (and my insurance unfortunately) it is considered an off label usage for the medication. They would pay for 12 because that is the maximum rx for migraines. I have an appt with a neurologis
  5. Thank you everyone for your answers. I've been out of town for a few days and just now getting back to this. I DO have a vitamin d3 diffencience - I was told 8 years ago when I was pregnant (they thought my baby was going to be born with rickets). Unfortunately I take blood pressure medicine for cystic acne (spironolactone) that effects my kidney function, so I would have to have the blood work done before I could take on massive amounts of d3. I do take a normal dosage of d3 daily ever since my pregnancy because of the diffenciency they informed me of (I am a ginger so I don't get much sun...
  6. They gave me the sumatriptan nasal spray, which worked fairly well, as opposed to the injection because I requested it. When I asked if using the injection would make a difference with my insurance they said no so I didn't have them change it - but if I could get more out of the injection I would be willing to try that. I have only been seeing the doctor for a month and he wanted to see if we could get the headaches under more control (for my sake) before we started any sort of preventative type medication - such as steroids or verapamil - to make sure that I had some sort of abortive measure
  7. So - I have been getting cluster headaches for 8 years. I have episodic headaches; I get a cycle about once every 6 months and it lasts from 3-9 months until my next remission. I have not had medical insurance until recently - so most of the times I could go to the doctor before I was coincidentally not having the attacks (though I mentioned it to every single doctor I've seen since they started). I usually try to withstand the cycle as long as possible - but when I had my longest cycle (the 9 months) I was at the end of my rope and had been on this forum a lot trying to find ways to cope. I f
  8. I NEVER use the strap for the mask - but I for sure don't want to run all of the oxygen out because I fell asleep lol. I take a blood pressure medication called Spironolactone for my cystic acne - it's the only treatment option I have left because they won't allow me to take Accutane because the cluster headaches give me bouts of recurrent major depressive disorder; which is a huge red flag for Accutane. So any more blood pressure meds are not an option because I am already taking too many blood pressure meds for my very normal blood pressure lol. I also already take D3 supplements every day b
  9. I do try to use the oxygen for 5-10 minutes after the attack has stopped - but sometimes I fall asleep and I have been really careful about not falling asleep while the oxygen is running - so if I get to where I can't stay awake any longer I will go ahead and shut it off. The Melatonin is a good idea - I already take blood pressure medicine in small doses so I will have to make sure it won't lower my blood pressure (because I don't actually have blood pressure problems - I take it for cystic acne, so it's already making my blood pressure lower than it should be). I will ask my pharmacist.
  10. I tried Trazadone when the headaches first started (before I was actually diagnosed with cluster headaches) because my MD at the time thought that I was just having trouble sleeping and that that was causing them (she obviously did not understand the gravity of the situation lol). In all fairness I had just had a baby 3 weeks before so it wasn't a blind accusation - I was very sleep deprived. It did not prevent the headaches from waking me up - only made me groggy and less alert while trying to deal with them. I have NOT tried taking trazadone while using oxygen.
  11. This is my 7th cluster headache cycle, I have been getting them for 8 years. This is the first cycle I have had while being able to get medical treatment from a doctor - I have been trying to get an oxygen tank for 5 years and this is my first cycle while having one. It works extremely well for me, and so I don't mean to sound ungrateful; it's just been a very long and hard road. My cycle started about 2 months ago and, similar to previous cycles, my headaches are primarily triggered by relaxation - specifically sleep. I am going crazy without any sleep. I keep my oxygen tank beside my bed, bu
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