Educating Health Care Professionals

[jfrillin]

I have both a husband and daughter that were diagnosed with Episodic Cluster Headaches years ago.  I can't tell you the few times i had to take them to the ER (Neurologist was admitting my daughter) and husband because everything we were doing at home wasn't working,  and the employees in the ER were clueless when we tell them they are having a cluster headache attack.  They dismiss us and tell us to wait our turn.  My husband was laying on the ER floor in front of everyone (last night)in an attack screaming in pain and we were told...there are 3 people a head of us looking normal as can be and that we had to wait.  Glad he wasn't having a brain aneurysm...he would be dead!    Nobody would help us!  They were ignorant and absolutely no compassion!   I felt like i was in a 3rd world country.  Where is the education for Hospital/Medical Employees?!?!    When i was pleading for someone to please help him...they gave me an attitude!!!   We went to the ER for help...and all we got was complete attitude and avoidance while he was laying on the ER waiting room floor having an attack!!!

[Cast Iron]

I feel very sorry that you had to go through that. Nothing as bad than to see your loved ones go through so much pain and nothing you can do at that moment, and have to wait your turn in the ER. I think we all can relate to your situation. What I would like to suggest is that you need to have prescriptions for the rescue meds. First you need to have Oxygen as a first abortive, its safe, cheap and portable to wherever you go. Using this on the onset of an attack with a flowrate of 25L/m has a high efficacy of breaking the attack. Second, if O2 is not helping to abort, you need to have Sumatriptan injections as your rescue to prevent having to go to the ER. Sumatriptan is a big hammer that will abort and make the pain go away within 5 minutes.  You’ll want both of them to make sure you are not dependent on the ER. On very severe attacks, both sumatriptan and O2 can be combined.

All the best

Alex

[jfrillin]

Cast Iron -  he had already used 4 Imgality shots which was the max he can take in a week....and 3 Emgality Shots plus we always have O2 at home ...25 lpm regulater, rebreather mask and M tank.  As I said.  Both he and my daughter have had clusters for years.  We are unfortunately "Pro's" in this area...not that we want to be.  They also do the Vitamin D regimen.  We went to the ER because nothing was working this cycle.  He hadn't slept in a week..the pain wouldn't let him .  Sleeping pills wasnt working.  He was having suicidal thoughts.  He wanted to be knocked out at the hospital with IV Benadryl.  OTC Benadryl..even at high doses wasn't working.  They gave him 3 iv bags of benadryl with Toradol and Steroids..didn't touch it.   They gave him Propofel..and that worked.   We have never in all the years he has had this needed to go to the ER because we can manage it at home.    My issue is with the lack of compassion and ignorance the lower level medical staff have about Clusters.  When your in a crisis situation and go to the place that is supposed to help you and they kick you when your already down is pathetic!

[FunTimes]

jfrillin

That does suck and I do whatever I can to stay away from the ER. only made one worthless trip and said never again for the same reason you have now. 

Not sure of your past but maybe re evaluate your tools. D3 has had a few updates to it over the years and maybe some of them can help you out. I also have tried the Emgality and it seemed to work the first month but did little at all the few following months. Sometimes I get lazy with my oxygen breathing technique and my wife needs to point it out that im doing something different to get me back on trac. I also down a 5hr energy drink to help the O2 out when things are bad. Ice packs are either a help or a diversion of how im thinking and also serve as a little cushion of me hitting my head with my fist. Suicidal thoughts I feel come with the territory and most of the time leave with the cluster attack but definitely not something to overlook. Ginger tea helps some with shadows or the inbetween pain and groggy feeling. 

Dealing with this with 2 family members for so long I am sure you do not want to hear this but I find myself in need of a reminder of what did and did not work in the past and tweaking everything a little sometimes helps me get out of a funk. I am chronic so I do it every day all year round and believe me I know how he feels now. when your sleep gets interrupted even for one night that can have a big snowball effect let alone a week of hits waking you up.

Best of luck and please just take this as advice that I know you already know about not that I think your doing anything wrong. And thank you for all of your support. I could not  imagine what it would be like to be in your position. 

[Pebblesthecorgi]

The ER setting is not a place you will get visible compassionate care.  All day they see pain scenarios: kidney stones, gallbladder attacks, headaches, back pain and trauma.  Its hard to work in that environment and not seem a bit jaded when someone comes in with a pain complaint..  Not an excuse, just an explanation.  Nothing moves fast in an ER except chest pain, strokes and trauma.  As you were given steroids and popofol I'd say you got better treatment than most ER.  Still it sucks.  Emegality usually doesn't work for acute clusters, more of a prevent.  Imitrex usually works but has some downsides.  Busting can be of value but not for everyone.  I hope your family doesn['t need the ER again, it sucks

[xxx]

Hey Jfrillin,

The next time you need to take your husband or daughter to the ER with a bad cluster headache, tell the ER receptionist, they're having heart pains.  That will get them to the head of the line tout suite.  Most ERs will administer an opiate like morphine and oxygen while waiting for an EKG.  Both will help curb CH pain.  Of course doing this is a white lie, but it does get you seen asap.

The real solution is to start them both on the anti-inflammatory regimen with vitamin D3 and its cofactors.  I developed this treatment protocol to help prevent CH in December of 2010.  I estimate 6,000 CHers have started this treatment protocol for CH since then.  You can find the published version of this treatment protocol on vitamindwiki.com at the following link.

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

I just checked.  As of this morning, readers of my webpage at vitamindwiki.com have downloaded 69,726 copies of this treatment protocol since I published it at vitamindwiki in January of 2017.

Please shoot me a PM if you have questions.

Take care,

V/R, Batch

 

[Tony Only]

The title, "Educating Health Care Professionals" is not possible done as single patients, spouses, family members. Join the nearest local headache organization, create a CH sub-group if needed and working as a network you can and will start making a change. When we are giving feedback or demanding a change after an ER or doctor's visit backed up by our local and possible mother organizations patient after patient that will be noticed. 

We seem to be very fragmented, isolated and alone in many countries. And at the same time each of us are dynamos.

Pf wishes to your family

[devonrex]

Sadly, in an ER setting, having knowledge of what CH is, would simply help a nurse triage it lower. ER triages on the greatest threat to life, while the pain feels life ending and you may want to end yourself, the actual attack will not physically cause you to die thus, you are triage as low on the scale. 

That is why saying chest pain works, yes because the consequences of a heart episode can get horrible and fatal quickly. 

I am chronic have had my share of wrecking my throat screaming for a couple hours, I know the pain. That being said, not being jumped to the head of the line is understandable from a strictly medical point to be seen on a threat to life scale.