Saturday, February 11, 2012

ER and my different experiences

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Ian G

Ian G

Mon, October 06, 2008

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Hi there from Migrainville AZ,

   I thought I would weigh in on the ER experience.  The very first time in 2006 I was very ill and after eight hours of excrutiating waiting, left the ER.  However as Teri knows and teaches us all - we are our own best patient advocates.  I went after the hospital - speaking to several people in patient relations and writing - so there was a written record.  I was told that I would never be treated like that again.  The next time I was at the hospital in 2007 I was in really bad shape.  We all know the experience of being given a "bucket" and told to wait.  However, this time I alerted my GP who was astounded after the first  bad experience because he practices at the hospital.  Between him alerting the hospital and whatever was now on  computer record, and my own Medic Alert information,  I was treated and released within a couple of hours - still there was the wait and my own rather awful "sound affects" in that bucket.  I talked with my GP again after that and he spoke with the head physician of the ER and the next time I came in with status mig. I was actually rushed back, in a bed within a half hour and was direct admitted to the hospital. In July of this year (2008) I knew things were deteriorating and in this particular instance my doctors and I had a plan and they told me to in fact to go to the ER where they would direct admit me again on their orders - which was the case.  It was a good thing because I was in agony and only waited a half hour.

   I think what we learn from this is really good communication between your doctor and the ER is essential.  Having a plan is the best way to combat that feeling of hopelessness and not being treated in the ER.

   Talk to your preferred doctor or specialist about the fact that you need a clear ER plan, especially if the closest hospital is not familiar with either you or doctor.

   The time to do this - is when you are as well as possible not when you need the ER because it will be too late.

   I wish everyone good health - and some of you - Happy New Year.

Best-

Ian

10/ 7/08 12:08am

I agree it is a good idea to have a clear plan when you can't manage the migraine at home. My visit to the ER was a desparate plea in some sense...eventhough they treated me well it was not the right plan. Finally I think my physicians understood how bad things really were and at least we have a plan now for when things aren't going well. I think everyone with migraines should have an ER plan or even something written on a prescription pad from their specialist that they can carry with them.

 

 

Anonymous
Norma Himert
10/11/08 1:02pm

Hello from a fellow migraineur:  I have suffered with migraines since being diagnosed @ age 14, previous to that I can recall having 'terrible' headache pain as a young child, approx. age 2 -3, so yes I understand and empathize with anyone having to visit the ER.

 

Throughout my life, @ age 46 I have plenty of experience visiting ER's and pain clinics, and to mention my gp....going to the ER throwing up & in excrutiating pain can be a black hole at times, as a younger woman I recall being a direct admit to the ER, but then I found out that I can walk into the ER, throwing up, and for the most part in the State of Florida, and Louisiana, even IL, I have not encountered any problems with being taken to a quiet room, and a nurse coming in immediately to help me out, usually the dr comes in quickly & I get the pain medication (usually Demerol) along with Phenegran and/or Zofran which works great for me, but then each person is different.

 

The only problem I have encountered since moving all over the United States is that some college towns (if you happen to have college age kids) will not treat you with pain medication at all, no matter what dr information or medical records you may carry, and that in the state if IL they like to immediately give you dilaudid which is a derivative of morphine & if it works for you great, although be informed to let all ER STAFF KNOW WHAT YOU ARE ALLERGIC TO AND WHAT ACTUALLY WORKS WELL FOR YOURSELF, otherwise you will get pain medication which does not work & only prolongs the pain which can intensify.

 

Now some hospitals do treat a migraneur as a potential addict, and will try to give you something non-narcotic, but as a migraineur of a lifetime we know that it doesnt work, so yes, work with your dr if you decide to be a direct admit, but for what?  The ER does a good job treating the pain, and they are always more than willing to inform you that if the pain does not get better within a reasonable amount of time, to return then they can evaluate the pain & see if you really do need to be admitted, so far so good for me since 1989 that I have not needed to be admitted....I have only visited the ER with good results ... You get used to the drill of questions at times it gets frustrating, but I have learned to carry a list of medications which I am allergic to, which medications work, and a contact # for emergencies if you go alone, works better if someone drives you to get back home safely.  The last time I had to go to the ER was just this year 2008, July.

10/11/08 2:19pm

Thank you Norma for your reply.  All of our experiences are different.  I was not always direct admitted.  The plan was in place just if I needed to go to the ER that I would call my Dr. first so he would alert the ER where I was going so I would not be treated like many people are in Arizona with disrespect, ignorance and practically medical malpractice.  Arizona is not migraine-forward. I needed to be direct admitted because I was in status and did not respond to the very same medicines that they used to treat you with in the ER.  Believe me, hospital stays are not the objective.  I mentioned my medic alert information which has the list of allergies etc.  I have it printed out since in my experience it seems they do not like to contact them which is the whole point of having it other than not being unable to speak for yourself. And in that regard because I often cannot answer for myself, I keep a list of the medications I have taken 24 hours prior to going into the ER and let my partner explain for me.  He has been invaluable when I have been too sick to talk.  Because he has power of medical attorney and durable power of attorney - which is another thing I highly recommend for people to have since you may not be able to speak for yourself - they do listen and allow him to stay with me.  We take copies with us and the hospital also has a scanned version in their computer system.  Gosh - there is so much to think about and that's why I just advise people to have their plan in hand before they are faced with an ER crisis.  I hope you are well this weekend - we are having a low pressure system here with wind that is not doing nice things for my head.

Take care -

Ian

10/11/08 3:31pm

yes it does seem that some states are not friendly in regards to those of us that suffer with the classic intractable mingraine...I went through that in 1993...the migraine from hell so it seemed, it would not go away no matter how hard I tried to ...  this migraine was non-stop 24/7 for months on end, I felt at that time that I would rather be dead than continue to suffer such hell.  at that time I was living in florida, I went from my neurologist to the er to my gp...it was a merry-go-round of pain, I was taking valium, dhe, demerol/phenegran and even toradol, prozac, zoloft, ...throw it all together & somehow the migraine broke through enough that I could 'sort of live' again another day, but with pain, I was also taking fiorinal # or fioricet #3, this is the only thing on a daily basis that has helped me live somewhat better...it's a life I do not wish on anyone else.

 

I can totally feel for you, as of right now, today, I only have a slight small migraine, classic of course, on one side, mine have always been right sided, I refuse to give in these days, I have had too many years wiped away from the suffering, missed too many dinners, holidays, my childs growing up was pretty good, but I suffered through a lot of pain to attend her many school functions, running to the bathroom to throw up & going out to the car to lay down until she came out, so I could run / drive to the ER for treatment, so yes, by all, it is very important to have a plan ready ahead of time, no matter what state you live in, that way you & your doctor are aware of what it takes get treated @ an emergency room.  As we both mentioned many times we are unable to speak for ourselves, so always make sure to have someone take you in that can or rather has the power to make decisions on your behalf, as you stated a medial poa, living will, that type of document is extremely important, that way you can get the proper treatment you desire and need!!

 

Sending you greetings from the midwest, as I prepare for the coming winter, which is when my migraines start really bad...the cold & zero below weather with snow/ice does not exactly agree with me.....not to top health issues off, I have developed asthma which can also trigger a painful migraine episode for myself.

 

Take care & be well...peace out

10/12/08 5:06pm

Dear Norma - thanks so much for your reply.  Sounds like both of us have had some of the same experiences of "missing" parts of our lives.  After my hospitalization which was more than just a "normal" hospitalization because I was in that valium coma, I fought my way back to my regular schedule.  I am now in the middle of my busiest time with concerts,gigs and screenwriting needing attention and I am descending into status day by day.  It seems the beneficial affects of the coma have only lasted two and a half months.  My neuro gave no guarantees - he said it could be two weeks, two months, six months - two years and so it seems I unfortunately landed in the bottom of the curve.  But for two months - I only had a handful of migraines and they weren't severe.  And that was bliss.  Now the honeymoon is over.  Yesterday I played two wedding gigs where I could mention nothing about how I felt as the status got worse as the contractors will drop you like a stone if they know you might be sick enough to leave. So you do an oscar winning performance - and they don't know.  Since they can't replace cellists in the height of the wedding season I have to play unless I end up in the hospital - and if that happens they just won't hire you anymore because they consider you too much of a risk - which has happened to me.

I have epidurals for my back which adds to the overall pain because I have pretty bad for my age degenerative disk disease - on tuesday and I see my neuro on weds when I hope we can choose a new preventative regimen to try. I've gone through about eight of the top drugs - all have failed - we've tried some combos and they haven't done well either so we'll have to try something different.  Right now my quest for Lyrica keeps ending in defeat at every appeal.  My healthcare needs are not being properly addressed.  Almost ended up in the ER last night but a shot of toradol at 3am and some morphine got me through the night - barely. Yes - I have a living will too.  The trifecta of legal documents as you said so rightly we all need - if anyone else is reading this it is important that you have durable power of attorney, healthcare power of attorney and a living will - at least in Arizona those are the three you should have.  I am trying to do things today while the migraine lurks - I know you know the drill.

Again - thanks for the dialogue -

Come to Arizona in the worst winter weather - it's the most beautiful season here - 70's in the day - fifties at night - we are having some out of season weather just like that today!  Oh - I forgot to warn everyone about something.  We all check our scents of things that we use every day.  There are some we can tolerate and others that can trigger a migraine in literally seconds.  I was in Target and needed some shower spray - usually I use Safeway brand which has a faint odor that is tolerable.  I used the Target brand "fresh scent" yesterday and it triggered the beginning of my migraine yesterday within a minute, I rinsed it off, turned on the bathroom exhaust fan, but still it was too late.  I should have smelled it at the store - so anyone out there thinking of using this brand - beware!

Thanks all  -- may you be well -

Ian

7/ 4/10 12:34pm

Ian:

 

Hello..I know it has been a long time since communicated on this site, but I was just wondering how you are doing?  I pray & hope that you have found some sort of relief since we last talked - as for me it has at times seemed to get bettr with the pain, other times not so much.

 

I keep going hoping that one day a 'miracle' (snort) cure will come our way or hey, we can always dream that these migraines will just disappear - fat chance of that, but like I said we can dream & fantasize of a better life without migraines.

 

Just these past few weeks I suffered with yet another attack which lasted along 8 days - but finally after sleeping for days & taking meds., fioricet #3, HBP verapamil (240 / 2x daily) switching over to imitrex for a few days then back to fioricet #3, it finally went away - mind you not totally - but enough so I can function again.. Cool

 

Anway, would love to hear from you - take care & pain free

 

Peace Out...Norma

7/ 4/10 4:13pm

Dear Norma - I am sad to hear that you were suffering so. Me too.  I ended up in the hospital in March and the end of June.  March started out as a migraine visit and then my left lung collapsed and they found out with a bronchtoposy (furtunately I was out) that I have sarcoidosis disease - an auto immune disease of the lung and organs.  Right now I am being treated with tons of high dose prednisone to suppress the disease (I have put on nine pounds of water weight)- wish it helped the migraines because I ended up in the hosp. for 4 days of treatment at the end of June (Sulumedrol, dilaudid, DHE, benedryl, zofran to keep it all down and other things).  I am better now but not migraine free it just lowered the threshold.  Meanwhile I have to have lung treatments and I have a home nebulizer - I didn't need something else to worry about!  But I am still flying up to Portland this coming weekend for my mother's 80th birthday - I promised her I would bake her a cake and sarcoidosis and migraines or not here I come!  I just flew for the day to LAX and lunch in B. Hills to meet with our screen writing manager so I know I can fly and my Drs. gave me the okay.  So I hope you are feeling better! We are in the weather when every day is 100 plus so it's hot!  Can't keep the dogs out of the pool - I can't spend too much time in the pool because I have a fentanyl patch for pain and it gets a little loose.  Thanks for writing - I'm seeing a lot of aura so I better stop.  Thanks so much for thinking of me

hugs

Ian

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