This is actually 2 questions.

I just got samples from my neurologist of Nurtec (rimegepant) I got really nauseous from the Ubrelvy, was wondering if it helped and was effective, and how people felt on it.

I am also starting on an old drug, propranolol soon (got to pick up the Rx Monday. I had asked for verapamil, but my low BP is an issue. It’s an old drug and I apologize if this is a repeat question, but, How did you do with it.?

I've not had any personal experience with either....hopefully someone that has will chime in....

Well I tried the Nurtec, it’s unfortunately  a no-go for me.

It did help, but, I am sitting here itching, covered in hives!

I tend to have an over reactive allergic response to things. (Multiple anaphylactic allergies,  I carry my Epi-pen everywhere with me) Took Benadryl for the allergic reaction, it’s helping the itch.

The Nurtec did help lower the duration and intensity of my CH
-3:30 am CH. From kip 6-7 to kip 2-3 and down from 20-30 min to 7-8 min.

- 8-ish am CH, from kip 5-7 to kip 2,  down from 25-35 min to about 3-4 min.

I also didn’t have a third CH after (but I don’t always have the third one)

I may try a different brand of CGRP antagonist . Anyone have any luck with them?

I will also be getting the propranolol later today, if anyone can let me know about their experience with it,

BTW-  I am chronic for the last 11 years.

Don’t know if it’s good news yet, but I went to my GP today & he said I couldn’t use a beta blocker because of my asthma. After a call to my cardiologist to confirm I can take it. He wrote to my neurologist & faxed the note to ask him to give me a calcium channel blocker instead. (I have an awesome GP) Now, I’m waiting on a phone call back from the neurologist’s office.

Keeping my fingers crossed for the Verapamil by days end.

So FYI - asthma & beta-blockers don’t mix!  :D

I got up a bit ago, with the beast trying to escape thru my left eye. Like it does most every morning. And just after it left, I hear my phone making the swoosh noise that mean I got a text. It was the pharmacy, they filled my verapamil prescription!

I can’t wait to try it! Hoping for relief.

In all honesty,  I have been in a depressive funk for so long, just living with the the pain, I had stopped doing anything but existing. I lurked here for a long time, tried every permutation of the D3 regimen, but when it didn’t work, I lost hope.

Just recently I had trouble with my job. About a month ago new boss came in and tried to take away my ADA accommodation for my clusters. And I had to fight back, stand up for myself, and push back. I had to stop feeling bad and just enduring it & take control, do something, anything, but I felt too lost, too beaten up by life to do much.

Then around that same time, new neighbor moved in to the house next door. We got to talking, as I saw he had gas tanks. Turn out he is a scuba instructor, but he knew a guy who dived who had clusters! He introduced me to him. This guy, had episodes in the fall, and spring, and was just over his last episode. He was moving in a month, and so he lent me his last, unused tank of O2 to try and a spare mask that he had. He showed me breathing techniques & how the rig worked. Then he helped me tape up the holes in the mask.

That first night I tried oxygen for the first time. Game changer! I had always thought that because mine only lasted about 20-30 min, that oxygen wouldn’t make a difference. Trust me, it made a difference, a big one. I could skip the triptans in the morning and just take the oxygen, I could get relief from when it hits in just about 10 min.

I was avoiding taking Maxalt at night for fear of medication overuse, that it might not work in the morning and mess with my job. But oxygen doesn’t have that risk. I was finally able to get some relief for the nighttime hits. I could even get back to sleep more easily after. It also didn’t leave me jittery and shaken all day like the triptans. In fact, the days I had the oxygen, people at my job commented on how happy I seemed. In all my years with CH, nothing had worked so well.

The last night with oxygen, when I turned the valve, and it hissed to a stop, my stomach fell. I spend the next 30 min with all that pain and no relief. I couldn’t do that to myself anymore, not when I knew that there was something that worked. So I said, no more. I started to fight back on all fronts.

I pushed back at work, and stood up for my rights. Filing a lot of paperwork. I had to get doctors notes, so when I went, I pushed for the medications I wanted to try. I am fighting with insurance for oxygen & with doctors to get the medications I need & I am going to be more proactive about my health. I’m not sure how many others here have ever given up, but it doesn’t work. Don’t live with it, even if you feel hopeless. Advocate for yourself and your health

I found out yesterday that the EEOC (they oversee ADA/ disability law compliance in the US) had decided in my favor & my job accommodations were being restored. I felt so good, I went out and got myself an ice cream cone, and sat and ate it in the park. I realized I hadn’t bought myself a treat in years. I hadn’t had ice cream unless it was while feeling sorry for myself on the couch alone.

Hope has made a difference. I had none for so long.

Sorry for all the rambling. I’ll post back when I start on the verapamil. I am waiting till Friday to begin it, just in case it affects me badly because of my job. I’ll post again, let you guys know how it goes.

Wishing you all PF days.
And lots of hope.

O2 properly used can be a game changer. The video on this page was filmed at a ClusterBusters conference and covers some of the basics.

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Thanks Racer!