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Afrin
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PCP here
I literally can not get two young ladies off of Afrin despite every measure we have taken including behavioral therapy, various decongestants, rinses, etc. I’ve sent them to two local ENTs which has rendered not helpful minus the obvious that they are destroying their septum and developing chronic sinusitis.
Any suggestions? One is willing to try just about anything at this point
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At our pharmacy we have 2 patients that are a couple that consistently come in and purchase ALL of the Afrin we have on the shelf. I'm convinced they can't be using it all themselves because of how frequently they do this (at least once a week). I have have tried to find ways it could be used illicitly but I'm just coming up empty. Have you ever had someone do this and why?
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Has anyone here been to Dr. Afrin? I'm struggling to justify the costs of his initial consultation. Given that I'm based in Europe and bedridden, I'm unsure about the logistics. From what I've seen, he seems like an excellent MCAS doctor. I've watched his YouTube seminars and was impressed, but what sets his approach apart from the standard treatment for MCAS, especially considering a diagnosis will be established? I can travel within Europe for a diagnosis, and I'm quite certain I have MCAS. For those who believe he's worth the expense, beyond the diagnosis and reassurance, what other unconventional treatments did he offer? I don't mean to criticize, but I want to make an informed decision. I've traveled long distances after reading positive reviews about other renowned doctors for different conditions and always returned home feeling disheartened and financially strained. I watched Demprey’s seminar, and she managed some challenging cases that extended beyond the MCAS category. I'm unsure if Afrin shares the same approach.
What options are available if someone doesn't respond positively to ANY treatment? What solutions can they offer in such challenging cases? I'm considering launching a GoFundMe campaign to give one last shot at life, but I need to know what to expect. I'd deeply appreciate it if everyone who's been to Afrin or any other experts like him could sincerely share their experiences, whether positive or negative.
A science-focused sub for Mast Cell Activation Disorders. Please note: The content on this subreddit is not intended as, and is not a substitute for, medical advice or diagnosis. It must not be interpreted as such. You are strongly advised to consult your own qualified healthcare professionals for any medical questions or concerns.
I had my consultation with Dr. Afrin yesterday and I have to say I am blown away with how thorough and kind this man is. He stay an additional two hours after his clinic closed with me to continue my history and treatment plan. His post visit notes are 9 pages long. If anyone is considering seeing him I would highly recommend him.
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A place to discuss non-allergic rhinitis or vasomotor rhinitis, it's symptoms, diagnosis, treatments, etc.
I've battled with nasal congestion for many years, particularly when I lay down to sleep at night. I have turbinate hypertrophy. I've been using Flonase, which does offer some relief, but it's not always as effective as I'd like.
Now, I've come across a product called Allermi that combines several ingredients, notably including Azelastine, Ipratropium, Triamcinolone, and Oxymetazoline (commonly known as Afrin). What caught my eye in particular was the inclusion of Oxymetazoline. For those unfamiliar, this is a decongestant that works incredibly well, but I have always been cautious with its use due to the well-documented risk of rebound congestion (rhinitis medicamentosa).
The manufacturers of Allermi claim that they are using a 'micro-dose' of Oxymetazoline, and that at this dosage, the product can be safely used daily without causing rebound congestion. This intrigued me, as I have had such a good response to Afrin in the past. However, I am somewhat skeptical about the claims. Given the mixed experiences I've had with decongestants, I don't want to risk worsening my symptoms.
Has anyone tried Allermi? If so, what has been your experience with it? And does anyone have insights into the safety of micro-dosing Oxymetazoline? Any thoughts, opinions, or experiences you can share would be greatly appreciated! I'm debating making my own version of this product by putting a few sprays of afrin in a diluted bottle of saline spray.
For anyone addicted to nasal sprays, with rebound congestion, or trying to wean off xylometazoline decongestant sprays like Afrin, Otrivin and Sudafed
I’m hoping this is it! I’ve made it three days without any Afrin - by far the longest I’ve made it in seven months.
I tapered by cutting back on how often I sprayed (kept a log) and switching from the no drip to the basic Afrin and diluted it with saline at the end of each day. I allowed myself one dose of no drip in the middle of the night each night while quitting so I could sleep. Tried to go longer and longer between each spray. Took me 8 days. I didn’t think I was going to be able to do it but it (surprisingly) wasn’t too bad.
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Why YSK: "While it’s not considered an 'addiction' in the usual sense, your body can become dependent on the drug. Doctors call this phenomenon 'rebound congestion,' or , and it is a very real problem. In fact, it could be responsible for up to 9% of visits to allergists and ENT doctors. "
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Anyone have experience using Afrin for more than 3 days? I was thinking about using it once a day for 1-2 days then taking a week break and using it again. Hoping this will be okay. I’m currently congested and want to keep my passages open as much as possible to prevent a sinus infection. Already taking Sudafed, Allegra, Nasacort and Ibuprofen. Last time this happened, I had a sinus infection for 6 months straight and I was miserable
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A science-focused sub for Mast Cell Activation Disorders. Please note: The content on this subreddit is not intended as, and is not a substitute for, medical advice or diagnosis. It must not be interpreted as such. You are strongly advised to consult your own qualified healthcare professionals for any medical questions or concerns.
I mentioned a couple times on here I was going to see him and a few people asked me to make a post sharing my experience when I did, so here I am lol
I left his office delighted with the entire experience. It was a 2 hour appointment (which he stayed another 2 hours + after the office closed as he had more stuff that he wanted to help explain to me) and it was incredibly thorough. Medical history went right back to when I was a baby and slowly working forward in chronological order, really getting me to mention absolutely anything that may or may not hold any sort of relevance. This was followed by a 20 minute physical and a break for the nurse to explain the urine test instructions to me (very strict as most of us know!). For the remaining hour and a half after hours he explained in incredible detail every single potential trigger to try take note of (including particulars like salicylates based on my presenting symptoms), the evolving science behind MCAS and what makes it such a complex condition to diagnose and form an individual treatment plan currently and then answered the long list of questions I had brought with me (although 80% of the 40 odd I had pre written he had already covered during our appointment anyway!) I found him to be compassionate and humorous. I now wait for lab testing and we will take it from there.
The price is steep, granted. But in my opinion it’s worth every single penny. I’ve spent thousands already on emergency room visits, holistic treatments, supplements etc etc so to have access to this knowledge and know that I will finally be on the right path at some point is priceless to me, personally. As I’m sure a lot of you can relate, the damage of having to go from doctor to doctor, waiting months between appointments only to be dismissed, not believed or have issues blamed on “anxiety” has taken a huge toll on me psychologically. A small price to pay for my sanity :) happy to answer any questions!
EDIT: something else I forgot to mention also, following on from a post the other week debating the use of “limbic system rehab training” (DNRS, Gupta etc) - he said some, not all, of his more reactive patients have had success reducing their reactivity by using them and that they are worth a try. He recommended trying one daily for 6 months as results would be shown, or not, by then. Didn’t recommend a particular program just said to do my own research and see which one in particular seems like it would be more interesting to me personally. If I remember correctly his reasoning for why it can help is that mast cells and neurons are often closely associated with each other. Hence training your neurons to “calm down” can also have a similar effect on mast cells in the nervous system.
Just to be clear, I haven’t decided whether or not I will use one of these programs nor am I advocating for their use. Just thought it might be helpful for some to hear.
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For anyone addicted to nasal sprays, with rebound congestion, or trying to wean off xylometazoline decongestant sprays like Afrin, Otrivin and Sudafed
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