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ClusterBusters

CSA

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  1. CSA

    Trying to understand my experience

    Thanks Kat, for the advice and sharing your story with me. I was given dilauded one time for something else and thought I was having a stroke! I couldn’t hold my head up or put thoughts together into a coherent sentence. I can’t believe you were discharged on that! Thanks for the extra info Batch! I’m going to place an order right now.
  2. CSA

    Trying to understand my experience

    Thanks Batch! Your granddaughter is beautiful! I was vitamin D deficient during pregnancy so my midwives put me on 10,000 iu per day for the first month, then scaled back to 5,000 after that. Now that I'm thinking of the timing, my first cluster headache would've been around the time I stopped taking it. My daughter was around 2 and was not nursing very often at that point. Unfortunately, my PA friend lives in another state and I never searched for a new PCP after moving so I'm on the hunt now. I will be sure to push for the serum testing and a headache specialist referral.
  3. CSA

    Trying to understand my experience

    Thank you Pebbles. My PA friend had sent me a screen shot of the Up to Date guidelines but it's very helpful to have the full pdf.
  4. CSA

    Trying to understand my experience

    Thank you both for the advice and for giving me a bit of perspective. I do not have a diagnosis. The oral sumatriptan was prescribed by a headache specialist just after my first cluster headache because of 'atypical migraines.' I was having daily headaches at the time. I did a trial of Topamax that didn't help and then an antidepressant that did for a month but then caused really bad insomnia which then triggered the headaches to start again. I moved out of state at that point and never followed up with another neuro because the headaches were manageable. The neuro never had anything to say about that first cluster headache. I realize I have it relatively mild compared to most. That's not lost on me but you are absolutely right that the peace of mind would be priceless. I live nearby a university headache center that includes psych providers in house so I'll try getting in there. This may sound dumb but I didn’t realize you could just have oxygen sitting around for years.
  5. Hi all. I’m new here and trying to understand what I believe has been cluster headaches. A few years ago I had an "attack" with severe and sudden onset right sided orbital pain, like I was being stabbed. heat, cold, pressure, sumatriptan, and benadryl were all ineffective. I had no nausea, wasn't sensitive to light/sound, and I couldn't sit still. I considered calling an ambulance but then it just faded and disappeared after about 2 hours. It happened in the evening. I did some research and convinced myself it was a cluster headache and saw that the first line treatment was oxygen. I didn't do enough reading to see that oxygen is often denied to CH sufferers. Fast forward to a week ago, I was laying in bed, had taken benadryl for post nasal drip from a cold when it struck me again. Exact same symptoms. I took sumatriptan which did nothing, so I decided I just needed to go to the ER for oxygen. Well I'm sure you all can guess what happened there. I got a CT scan, was given fioricet, and denied oxygen (for the most part- I'll get to that in a bit.) The PA told me he's "been doing this for 21 years and never heard of that." I asked them to look it up. He refused. They tried to give me a bunch of other medications that I refused (SQ sumatriptan was not one of them.) The PA said my CT was normal except some sinusitis. I told him I had a cold and he said that's what my headache was from. I told him he was wrong and I knew what a headache from sinusitis was like. I told him I wasn't exaggerating the pain- that I had given birth without any interventions and this pain was a million times worse. He finally said he'd give me oxygen but when they went to set me up on 2L per minute via nasal canula I explained that the recommended therapy was at least 6 via a non rebreather mask. He refused starting that he didn't have the authority to give that because I wasn't having any respiratory issues. I settled on the 2L via NC and started purposefully hyperventilating the O2. To my amazement my headache just switched off after about 10 minutes. He came back after 15 minutes and I told him it worked. His response? "Or it was the fioricet." By that point it had been two hours since they gave me the fioricet. Anyway... This leaves me with a few questions. Are there actually restrictions on ER staff for when they prescribe high flow oxygen? I have a respiratory therapist turned PA friend as well as a pulmonologist friend that told me the oxygen therapy is harmless and they should've given it to me but they didn't say whether there could be legitimate reasons why they wouldn't be allowed to give it to me. The PA's attitude and tone tell me it had nothing to do with policy and everything to do with his ego. I don't seem to get these headaches in clusters. They seem to be one-off events. Is this how they start? Does anyone else experience them like this? I get plenty of other headaches in clusters but not these symptoms. My mind went to a very dark place in the middle of this last attack. If there's a good chance they are going to increase in frequency, I want to know so I know how hard to push for oxygen. It'll also probably be the impetus for me to finally treat my already existing but mild anxiety/depression. If they are only going to hit me once every couple of years, I don't know that it makes sense for me to keep oxygen on hand. Does anyone have experience having a headache specialist write something up that you present to an ER with justifying the use of high flow oxygen?
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