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ClusterBusters

Ddikevin

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  1. Ddikevin

    Emgality for episodic

    Brian, thank you for the offer of help, if you check the emgality website it says for episodic its 3 100 mg's as the first dose and then 100mg monthly. I didn't think you had to wait months for it to work. best Kevin
  2. Ddikevin

    Emgality for episodic

    I wanted to follow up with everyone on my post on August 25. The week of the 25th we were away on vacation and the attacks gradually got a bit stronger. When we returned home I had another Emgality in the fridge as the pharmacy had given me two injectors when I refilled previously which is why I think the neurologist gave the pharmacy a migraine script so that I could get more. How and ever I had now taken 4 120mg injections in a little over 4 weeks which is about right for an episodic cluster patient. Regrettably the attacks have returned to their full intensity and after a few really bad nighttime attacks I have started the prednisone taper again which seems to be working. I think my next step is the alternative treatments. I did purchase the excellent book by Ashley Hattle and will use that as a reference. I suppose I will keep doing the Emgality as I can get it as I think it helps a little . I do have a request to the community. I need to find somewhere in Northern New Jersey area, Rutherford , Hackensack Nutley area to get an oxygen tank etc if anybody knows. Thanks
  3. Ddikevin

    Emgality for episodic

    Thanks you are correct. I saw the 3 100 mg on the Lilly site after I got my prescription thats why I was comfortable taking the third injection even though I have now taken 360mg over the 300mg. I will notify my neurologist.
  4. I am a long time episodic sufferer and normally had the two cycles spring and fall. In the last couple of years I had been using prednisone taper and sumatriptan as needed. In the beginning the prednisone worked quickly stopping the headaches within 48 hrs but now it seems like it takes a week or more for it to stop them . This in turn has increased the amount of Triptans I have been using. I noticed a big change this year as I am now in my 4th cycle and it seems like I only get a month break between cycles. I had a discussion with the researchers at Yale and they said that the prednisone and triptan use could be increasing the amount of cycles that I am experiencing. I had heard of Emgality and got a prescription from my neurologist. I got two injectors and stored them in the fridge and will receive one injector every month after that. Maybe two weeks after receiving emgality I felt the shadow signs of another cycle so I decided to try it. I did the two injections and the next day felt very tired. But for nearly two weeks I didn’t have any shadows. One or two days before I had to refill the prescription I had a mild attack lasting 5 or 10 min, very bearable. I refilled the prescription and took another injection and now for a week or so the mild attacks come in the morning and after I go to bed. I am hoping to ride this one out without steroids or triptans and keep taking the Emgality every month as a preventative. I will update here as this cycle continues on Emgality.
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