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Cmwlondry last won the day on April 2 2020

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  1. Thank you all so much - I am actually FIVE days cluster free!!!!! After having these for so long, I know to be cautiously optimistic but I am celebrating for now... Thank you again for all of the help and guidance and I am so glad to have connected with this group to know how to better fight this battle. Just so grateful!
  2. Ahhh so interesting! I was prescribed the Maxalt and Cambia with my last episode in 2014 from my original Neuro, so I had requested it as an option to the consortium of other drugs I’ve been using. I wonder if the research has changed since then? Almost every night for the past 2-3 weeks, I have been using the Maxalt and O2, but will stop the Maxalt now!! For the monsters, if I haven’t taken any other meds that day, I’ve used the sumatriptan injection - good to know on reducing the dose, will definitely look in to that! I used one Methylpred 4mg pack at the end of December and it broke up the beginning of the cluster, only for it to resurface in Mid-Feb, so at the beginning of March I started another Methylpred 4mg pack. My doc did just write me a script for 8mg methylpred pack and for verapamil because of how badly I’ve been struggling. I think you’re right though probably taking too many competing medications which could be exacerbating the episode... that said, I think I may just take a few days and go back to my old heat pack fix and hold off on the steroid pack and stick with the sumatriptan and give the O2 another shot - verapamil will be my last resort in a few more weeks as it has been shown to cause a higher risk of neonatal seizures. I’ve been using 2000L tanks and alternate the regulator between 15 & 10 LPM... am I doing that right? Will also look in to the D3 regimen!! Thank you SO MUCH for all of this information - you have been a great help! Please let me know if you’ve got any other tips based on the additional information I provided below - I’ll admit and it’s probably obvious in my original post that I’m a novice at actually treating them - I’ve had them so long and just always deemed them untreatable. Thanks again, Catherine
  3. Hi all! I just found this site!! I have suffered from episodic clusters since I was 12 (now 33), and my prior episode was in 2014 when I *FINALLY* received my diagnosis by a headache specialist. About 6-7 weeks ago, a new attack set in - I’m now 13 weeks pregnant with our second baby. I weaseled my way in to a local neurologist (actually a headache specialist who works specifically with pregnant women), and we revised my treatment plan (now using a combo of O2 (which stopped working for me after two days), sumatriptan (6mg injection & 25 mg oral), Rizatriptan, Cambia, Magnesium and have already completed two rounds of Methylpred). I am still having 2-6 headaches a night... and am hardly getting any sleep. I stay at home with our one year old, and would love to “nap when she naps” but that triggers a midday attack - I am just really struggling to see the light at the end of the tunnel. I would love any guidance on meds or reassurance that my baby is going to be okay. Thank you in advance! Catherine
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