Ms Adequate Posted July 15, 2018 Share Posted July 15, 2018 Been suffering from clusters with migraines for about five years now, and though they've been diagnosed for these last three years, when I go to a doctor they still insist that it's a sinus issue. This was of course the diagnosis I got in the first few times I went, before I knew what was happening. I get that the location of the pain is similar, but believe me, I've had sinusitis before and it's nothing like this! I was in so much pain a couple of weeks ago that I was in A&E and despite informing the doctor what was going on she 'diagnosed' it as sinusitis and sent me home with amoxicillin! 24 hours later I was back in A&E being admitted because I had attempted to cut my wrists to make the pain stop. (I don't really even remember that day, it's just a haze of unfathomable agony that ended up with me in hospital.) At least the next doctor I saw put me on oxygen that calmed things down for awhile until I got onto a ward that actually took things seriously. How do you all convey to doctors that aren't familiar with your medical history that you are not, in fact, dealing with a sinus infection? Quote Link to comment Share on other sites More sharing options...
jon019 Posted July 15, 2018 Share Posted July 15, 2018 (edited) Hi Ms A...welcome...glad you found us...we'll try to help...…... This will sound glib and frustrating...but is exactly why clusterheads HAVE to find a headache specialist. Even regular neuros get minimal training in headaches....PCPs probably even less. The best I had instructed me to call immediately when I got in trouble....and her staff was instructed that cluster patients had priority. Her clinic partner wrote a flaming letter of medical necessity that got me insurance coverage for oxygen and triptans....the ONLY Doctor, of any kind, who ever advised to "stockpile" meds (triptans) when out of cycle to combat the insurance companies ridiculous/heartless/clueless limits per month.... There is a thread here of clusterhead recommended Docs for various areas of the country: https://clusterbusters.org/?page_id=455 ...hoping one is close enough to you and taking new patients...be SURE to say you are a clusterheadache patient (in cycle if so!) and HURTING bad. Offer to fill in for a cancelled appointment. Bring any records of your diagnosis, any meds or strategies you have employed, a journal of some sort describing attack timing, numbers, pain level, possible triggers, cycle length, age of first incidence, symptoms, etc. Docs of any kind love this kind of detail from a patient...diagnostic jewels!....indicates you are serious, determined, thorough, likely to be treatment compliant. I will never forget the 1985 article I read in a headache newsletter that advised treating physicians that the presentation of such a journal...all by itself....was an indicator of clusterheadache….we seem to be a bit obsessive-compulsive... Best Jon Edited July 15, 2018 by jon019 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted July 15, 2018 Share Posted July 15, 2018 Ms A', what are you doing right now for your CH? You said in a different post that triptans didn't help you. Was that in pill form, or as a nasal spray or injectable? Do you have oxygen at home now? There's a lot you can do for yourself without a physician, for example the D3 regimen, but other strategies, too. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Quote Link to comment Share on other sites More sharing options...
Ms Adequate Posted July 16, 2018 Author Share Posted July 16, 2018 Thanks for the replies! I'm currently not in a CH cycle, just migraines, which is very unpleasant but not more than I can handle. I'm waiting on a couple of upcoming appointments with my GP and a neurologist to discuss oxygen and so on, but I'll definitely look at other things I could try! Edit: CHfather, I was given pill triptans, which I hear don't work fast enough to be that useful? I'll have to bring that up too. Quote Link to comment Share on other sites More sharing options...
xxx Posted July 21, 2018 Share Posted July 21, 2018 (edited) Hey Ms Adequate, Starting the anti-inflammatory regimen with the 12-Day accelerated vitamin D3 loading schedule is the fastest way to a migraine and cluster free headache status. I've recently started taking Bio-Tech's 50,000 IU water soluble vitamin D3. It's great! I'm still battling allergic reactions so I can go roughly 72 hours between 50,000 IU Bio-Tech doses for an average of 16,700 IU/day. I order the above offer from Amazon at the following link. This is the least expensive form of vitamin D3 you can buy. You can do the accelerated vitamin D3 loading schedule with these at 1 capsule a day (50,000 IU/day) then once completed, take one capsule every three days for a week then one capsule every 5 days for an average daily dose of 10,000 IU/day for less than 5 cents a day for the vitamin D3. https://www.amazon.com/Bio-Tech-D3-50-50-000-200/dp/B00IAQUJH0/ref=sr_1_4_a_it?ie=UTF8&qid=1532201440&sr=8-4&keywords=vitamin+d3+50+biotech Why do doctors want to treat improperly diagnosed CHers with medications for a sinus infection? Simple. They don't know any better. They've been taught in Med School that a pharmacological solution is the best way to treat most medical problems. As Big Pharma gives large financial grants to nearly every medical school along with the results of RCTs of the pharmaceuticals they fund... what else would you expect? Follow the cluster headache treatment protocol at the following link and substitute the Bio-Tech vitamin D3 50,000 IU capsules and you'll be amazed how fast the CH beast runs away leaving you CH pain free. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Take care and please keep us posted. V/R, Batch Edited July 21, 2018 by Batch 1 Quote Link to comment Share on other sites More sharing options...
Ms Adequate Posted July 31, 2018 Author Share Posted July 31, 2018 Hey thank you so much for that information Batch! Apologies for not replying sooner, I was bedridden haha! I will definitely give this a try, hopefully by the time my neurologist appointment arrives I'll already have this as a solution. Quote Link to comment Share on other sites More sharing options...
MoxieGirl Posted August 16, 2018 Share Posted August 16, 2018 To answer the question posed in the title, because doctors are idiots. It's like when you phone tech support about your computer or phone, and their first suggestion is 'turn it off and back on again'. To be fair, as an IT consultant, that does solve the problem a surprisingly number of times. But when doctors apply that same default answer without actually listening to the person, it really pisses me off. Guess you could take a stun gun with you and zap them between the eyes, saying 'it feels like this'. No, just joking. I don't recommend doing that. LOL Have you seen a neurologist yet? They tend to have a bit more of a clue about clusters. Just a bit mind you. MG Quote Link to comment Share on other sites More sharing options...
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