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Everything posted by BarcodeJ

  1. Update: Saw my neurologist today finally...aaaaaaaaaand....he actually prescribed the oxygen without me even having to ask for it. Hi flow rate was a little lower than suggested at 10 lpm but I figure I can always buy a different regulator if needed. the tank and script were the important part. Also gave me a script for injections so that's nice as well. So now my new problem. Oxygen has to be supplied by a DME provider. There was only about 5 in network within 100 miles. and only 1 of them has Oxygen. Their website kind of bugs me a bit though.... Quote: " Oxygen Therapy Lincare recognizes that each oxygen therapy patient has a unique set of circumstances based on the progression of their disease state, desired activity level and personal preference. Oxygen concentrators, stationary and portable oxygen systems, and high pressure cylinders are available to coincide with each physician's prescription. It’s our belief that when patient needs are most accurately met, patient outcomes continue to improve. Regular monitoring of how closely each respiratory patient follows the prescribed course of treatment helps Lincare ensure compliance with liter flow and hours of use. It is this regular monitoring that increases the likelihood that patients will receive the maximum benefit from prescribed therapies. Our wide suite of services also allows for program modifications to be made quickly to accommodate fluctuation in disease condition or change in lifestyle need. As a result, patients and physicians can rest assured that Lincare is equipped to be a long-term partner in the fight against COPD and other respiratory disease. " This deal about regular monitoring of patient's o2 usage to ensure compliance with liter flow and time used REALLY bugs me and seems to show a lack of inclusion to the unique needs of CH sufferers. I sent them an e-mail asking if they had experience with Cluster Headache patients before I try obtaining anything from them. I may try to convince my doc to write a medical necessity letter to the insurance to let me go out of network to find a supplier that just does their job and "supplies." Idk, is this typical of oxygen suppliers in your experience?
  2. Regarding the dosages. I started vitamin d loading at 40,000 IU (with coconut oil for adsorption) last Saturday. Magnesium 800mg a day started on monday. I figure the regimine calls for essentially a 600,000 IU loading dose program on the d3 so that means 15 days at that dosage then dropping down to the 10k IU a day. Vitamin K 100 mcg a day. Verapamil 240 mg ER (again, I know...hopefully the neuro will fix that for me.) Just finished the 100 total mg the doctor gave me of prednisone. I am hoping for oxygen. Even injections. I dont know how effective a nasal spray can be if one of the primary symptoms of CH is congestion. Either way I am trying to stay off the triptans for the moment. I have read through the "busting" articles. I have a lot of experience "busting" before I had CH. I grew my own for a long time. Hoping to regain access soon. Until then, keeping energy drinks and ice packs around and crushed ice to induce brain freezes as needed.
  3. Ok, I'm new here. Self diagnosed a little over a week ago, went to doctor, explained symptoms and cycles, he agreed. Been going on for 6 years episodic, twice a year and being treated as migraines until now. Supposed to see neuro soon, waiting on the appointment date now. Until recently all I had available was Rizatriptan or Sumitriptan tablets. I now have nasal spray as well though I havent used it yet and doctor gave me verapamil (which despite my objections he insisted should be extended release. I'm waiting for neuro to hopefully fix that but for now taking it a few hours before bed time.) I had a cycle start about 3 weeks ago: one headache, every night, approximately midnight, hits whether I go to bed beforehand or stay up. This lasted for 2 weeks, while I started googling and figuring out what it was finally. I quit drinking, started verapamil, got a steroid injection in doctor office (normal dose of IM steroids) and an absurdly low course of prednisone (20mg a day for 5 days). I also started taking vitamin D, magnesium and vitamin K supplements and 5mg of melatonin to help me get to sleep at night. The headaches stopped Sunday and I went all week with only shadows. I woke up today with a "minor" CH. It wasnt bad as CH go but it was outside of my usual cycle timing. I've never had one wake me up at 8AM and now I'm stressed cause if that starts happening I'm gonna start missing work. I'm hoping it is just a fluke because of taking the verapamil, vitamin D and magnesium. Anyway, when I woke up I decided to take pics because I am supposed to see a Neuro soon. I got to the bathroom to look in the mirror and these are my symptoms: Obviously pain. This is in the temple, and behind the eye mostly but also goes up the forehead a little and the back of my head at the base of my skull is tight and tender as well. If I had to put a number on this one I would say Kip 7~ Autonomic Symptoms: Left eye watering/Right Eye dry. Left Sinus feels congested/swollen shut and yet it feels like the air is burning inside. Right sinus clear. Pupils seem to be similar in size. Left eye has difficulty opening. I am not sure if this is swelling or muscles spasming in response to the pain. Trying to open it fully hurts more. Not sure if because if because of pain or a sensitivity to light. If I leave the left eye shut, i have no sensitivity to light at all while using my right eye to navigate. But trying to open the left eye seems less painful in the dark. I know photophobia isnt really a CH thing but the fact that it is unilateral? Idk. Also, both eyes bloodshot. That symptom is the only one that seems to be on the right side as well. There is zero pain, watering, drooping etc on the right. Sometimes I try to focus on compartmentalizing in my head and escaping into the right side to get away from the pain. Sometimes it helps, sometimes it doesnt. This morning I just wanted to sleep. Putting a cold wet washcloth on my eye used to help a little, now it helps, then feels like it hurts more so i decided to try the whole ice to the carotid deal. Frozen vegetables in a pillow case, wrapped around the neck, surpringly helped a bit. After about half an hour the pain subsided again and I fell asleep, waking up around noon with my shirt soaked from the condensation of the thawing vegetables lmao. Still had some shadow type pain but it was mostly gone and without using any actual medicine this time. My questions: Is the red eye on both sides a little weird? I mean my right eye doesnt hurt at all. Autonomic symptoms are supposed to be unilateral, but from what I understand it varies a little. Unilateral photophobia? Is that even a thing? Anyone else experience anything like that? Is it normal for the meds to throw off your cycle temporarily like that when you start? I'm thinking, the quitting drinking, prednisone and influx of verapamil and vitamins maybe just raised the threshold temporarily, because I have been having shadows every evening but they never materialized into anything until this one woke me up out of the blue in the morning. I know, I know. Go to a doctor. I'm crossing my fingers that I will get to the neuro soon, but I'm not holding my breath that he will be competent. My little corner of Texas is famous for doctors that know very little about anything. While I know that you all are not doctors, I am pretty sure a lot of you know more about CH than any doctor within 300 miles of me so I would value your input tremendously.
  4. I had some weird episodes of tinnitus(?) that are infrequent and short lasting but extremely disconcerting when they happen. I know "shell-shock" is a term for PTSD but that is the best description I can come up with it. If you have ever seen one of those movies when an explosion goes off next to the main character and they go to stand back up and all you hear is the tinnitus with everything else suddenly going silent, it's kind of like that. The first time I had it happen I was working at Starbucks with plenty of loud noises around with the espresso machines and music and people then suddenly everything went silent and it was just ringing. Lasted all of 10-15 seconds and then went back to normal. This has happened about 5 more times in the last 6 years and always seems random with nothing seeming to precipitate it. My clusters started about the same time, but I can't recall if I was in a cycle when these happened or not, I will have to remember to keep track next time. One other thing, pressure in the ears. I have it on both sides, but definitely worse on my cluster side. My hearing has gotten worse since clusters started, and I can't explain it but it doesn't feel like just hearing loss. It feels like a physical or pressure obstruction. When I breathe in deep or exhale fully there is a clicking sound in the ears, drives me crazy at night sometimes if I can't tune it out. I have TMJ disorder and assume it is related to that, but it is curious that it is always worse on the cluster side. If I try to "pop" my ears or whatever you call it when you close your mouth, hold your nose and blow to open the eustacian tubes and release pressure build up it never feels successful like it did when I was younger, more like it halfway opens but the pressure doesnt get to escape fully. Also the inner corner of my left eye starts to bubble like air is escaping there. Feels weird as hell. Freaks people out when they see it too. Went to an ear doctor who looked in my ear blamed it on allergies without any further tests and prescribed some nasal spray that the insurance said no to because it costs like 400 dollars. So maybe the ear thing is something else entirely for me. maybe it isn't I don't know, but since it was asked there's my input.
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