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ClusterBusters

Steve A

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Steve A last won the day on January 31

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  1. Steve A

    Thank you!!!

    So I got all my D3 stuff today and I’m set to start that on my own. I did mention it to her during my consultation and she said she had heard about it but didn’t know enough about it. She didn’t poopoo it and said that it didn’t sound like it would hurt. She prescribed a prednisone taper which is pretty mild because I am likely nearing the end of my cycle ( at least I hope so) and I’m going in tomorrow morning to Get my three Emgality shots. I’m going to confirm with her that she sees no problem with me doing the D3 in parallel with this. I realize that I won’t know what ultimately “fixed” considering I’m going down three paths, but Whatever it takes to get my life back. We did talk about O2 and when the beast returns next year, I’ll likely go that route instead of the triptans to abort. Any holes in my plan?
  2. Steve A

    Thank you!!!

    I wanted to take a second to send a HUGE thank you to this website and it’s moderators. Four weeks ago, after a 15 year absence, my CH returned. And with a pain level I don’t remember. I didn’t know what to do and couldn’t remember my drugs I used to take or if there were even any changes in prevention and treatment. I went to my own general practitioner and as I explained what was going on, he began thumbing through his drug catalog, gave me a referral and that was that. I called the doctor he referred me to and he couldn’t see me until the end of February, clearly (or hopefully) beyond my need to see him. This past week I was in hell. Multiple attacks per night and then attacks while I was at work and driving to work. All I had were triptans at my disposal and those were clearly messing with my cycle, making it impossible to predict and creating multiple attacks per day and night. Wednesday evening, after having three kip 7 or 8 attacks, I found myself in my partners lap sobbing. I couldn’t find someone to help me an I didn’t know how to fix it. That morning, I found the list of recommended doctors on the site. Curiously my referred doctor was not there, but there were three others. One five miles from my home. I called them fully expecting to get the, “we aren’t seeing new patients until later next month”. But instead, after telling her I suffer from CH, she asked me if I was available this morning at 7:00am. Needless to say, my emotion bled through the phone. I felt saved. And this morning I went and met the most amazing people. They knew what CH was. They knew how much we suffer. They told me that CH sufferers always get bumped to the front of the line. They knew of all the current treatments and gave me the options of choosing. And to top it off, at 7:30, I started an attack. The doctor injected me with imitrex, guided me to a quiet room, and let me deal with the beast in private. When I came out, I had a bag of goodies that I had recently paid an arm and a leg for, and several reassuring smiles that made me know, I am in good hands. And I wouldn’t have found it if it weren’t for this site. I am eternally grateful. I don’t know if I found my personal fix, but I found a trusted partner in the process. Thank you.
  3. Steve A

    No Predictability to the attack?

    I haven’t but in the past I’ve been told it’s low and took a D supplement. Wasn’t in a cycle at the time. I forwarded the white paper to my doctor yesterday along with instructions on how to write the script for oxygen. While I get the regimen and what supplements are needed I don’t get the loading part. How does that work? Is that the 50,000 D pill? I didn’t order that one but will if necessary.
  4. Steve A

    No Predictability to the attack?

    I’m seeing that this time around. I had one at 9:00 last night, one at 11:30 and one at 1:30am that hasn’t fully gone away yet. My D3 supplies come in today so hopefully that helps. Because I am running out of the sumatriptan. Sent my doctor the instructions on how to prescribe O2. This sucks.
  5. I am a month into my most recent attacks (after a 15 year hiatus) and have a question about the predictability. In the past, and for the most part during this most recent attack, I have been able to count on my visitor arriving around 8:00pm each day. Yesterday it happened at 2:45pm and today at 8:00am while I was driving. I don't remember the attacks going off schedule like this and am wondering if anyone else sees this? I'm 95% certain that this is still the CH I have experienced and been diagnosed with, but thought I'd check. I am currently utilizing sumatriptan nasal spray and just picked up the injectable form this morning.
  6. Steve A

    15 year remission?

    I’m hoping to discuss O2 with the neurologist later next month. Hopefully I’m over this bout by then. For now the sumatriptan is working. I’m only using the meds on the first attack because it’s the worst one. The other one or two aren’t as bad and I can ride them out. Thanks for the tip on the GoodRx. I’ll definitely check it out.
  7. Steve A

    15 year remission?

    Nasal sumatriptan is working. But this time around I’m getting 2 to 3 daily. Used to be one every other day in previous cycles. I only use the spray on the first one and ride out the other one or two which thankfully are only lasting 15 minutes or so. Sad part is my insurance company will only cover 12 doses in a 24 day period. Not gonna cut it for a CH sufferer. Pharmacist told me to have my doctor prescribe the injectable form as a work around. Which he did. But insurance isn’t buying it. So if I want the miracle drug that works for me, I’m out of pocket $2,000 for shots or $900 for spray. Don’t see the specialist until Feb 26th. Hoping I’m out of this cycle soon.
  8. Steve A

    15 year remission?

    Thanks Batch. Went to my primary care today and sadly I knew more about clusters then he did. I left with a prescription for a nasal sumatriptan and a referral to a headache specialist nearby. I’m gonna read up on the D3 deficiency at your suggestion. Thanks much.
  9. Steve A

    15 year remission?

    Hi Everyone, I am a 51 year old male who hasn’t had a bout for 15 years. Prior to that I suffered once a year for a month as is typical. Late last month they started again. Anyone else experience such a long time in between? And if so, did it start back up with the same patterns? Did it come back every year? Just want to know what I am in for this time around. Also, the duration of the attacks seem briefer for me. Usually from onset to complete relief is only about a half hour. But last night had two attacks in the span of three hours. That was new. Last question, is O2 effective for half hour attacks or is it easier to just ride it out? I feel like a noob with all these questions, but sadly I’m a vet. Thought I was actually done with these things. But here I am again.
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