Cyclic Vomiting Syndrome Message Board
Sign up Calendar Latest Topics
 
 
 


Reply
  Author   Comment  
scooky1

Registered:
Posts: 132
Reply with quote  #1 
So because really don't know what to say at all but this may be my own fault because I really over worked myself.
I am 65y/o male and have been working on a project that takes me about 5 hours a day of hard labor and it's not too bad but hard on old bones!
If you have followed my post's about "Aimovig" and the other couple meds I am trying in combination with a bunch of other ground breaking stuff, well it was about the suckiest week in a long while! I went to the ER 5x and it was messy, there are 2 hospitals here, one in Bend, Or.
and one in Redmond, Or. They are each approx. 20 miles from my home so the EMT's asked where do I want to go I said "Redmond" I had not been there in a couple of years and thought I would give it a try.
I had never had a good experience at Redmond because the usual ER Doc Syndrome I call it "ERCVSDOC" Syndrome. Yea that's it!
one time I went there when I had been having a string of attacks (all on her computer) and this ditz nurse had the nerve to ask me how many ER's and urgent care's had I been to that day, inferring I was going all over town looking for a fix, the Dr. was standing right there, I asked him are you really going to let this girl talk to me like this? He had a stupid smile and said nothing.
Well this time was no different except the first time I got there after doing everything I could to abort the episode (took everything I had) got in hot bath and waited as long as I could and knew it wasn't going to go away, So I dialed 911, it was going to happen and I knew I had waited long enough.
Got in the ER and the meds I took at home Kicked and I thought it was going away, I told the RN what was going on and went home.
Back the next day everything the same (different Dr.) but I was told by this ER Dr. "we don't use those kind of narcotics on people like you! "what do you mean by that" I asked?
She walked away and said there would be somebody right with me.
I tried going to Bend hospital the next night and ran into "Dr. Peoples" holier that thou, always says very first thing "still smoking pot?" never listening for the answer. I said NO! he just walks away. but somehow a nurse came in about an hour later and gave me dailaudid and sent me home.
It has been OK for the last 2 days but every morning early I end up in hot bath and taking meds to stay down but it seems to be going away I think.
Sorry guys about the ranting but I don't think I have yelled about that kind of stuff for a while, it seems the monster is still scratching at my door every morning this month and I am just so tired.
Tune in next time for the rest of the story!
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,750
Reply with quote  #2 

I took a look at "Let Down Effect" and maybe you are going through this.  Your stress hormones kicked in because you were excited your new meds seem to be working.  This is major and I can imagine the cautious hope you have.  You do more, get more tired, keep working because you are not sick, get more tired, feel "off" but keep going.  

What I read was to not let down all at once.  

So even though you are cycling and almost cycling, maybe doing less of what you were doing, keeping your brain busy if your body is not busy, keeping as regular a sleep cycle as you can despite being exhausted, keeping as nourished a possible, maybe some of this might be helpful?  This in effect keeps some of those good or bad stress hormones working and you gradually decrease them. 

I am sorry about the crappy ER care.  We need a good mnemonic for ERCVSDOC.

My first ides is ---Especially Rotten Certainly Very Scary Dreadful Official Care--  any suggestions?


__________________
ginny CVSA Moderator
0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 1,092
Reply with quote  #3 
This was a struggle point for us too.. Just when things were going well, my son would have a big attack. Can the Dr that is prescribing you the meds help you at all? Have a direct admit? 

To me, it just seems like the ER car overall, for any condition, is a struggle point. I was there a couple weeks ago for chest pain and a migraine that looked like a stroke. Everytime my heart beat, my left eye closed. Even with an abnormal EKG, excessively high blood pressure and stroke like appearance, I wasn't seen for 7 hours. I was given benadryl for the pain and only AFTER those first 7 hours. 

I have gotten involved with the US Pain foundation and their platforms for chronic illness and opioid use for chronically ill patients. It has become a struggle point for any one with chronic pain. Too much so. I can also say that CVSA knows that this is a problem. First we have the challenge of being an underrecognized condition, when we finally gain some ground, we get grouped in and confused with CHS, an even harder battle to fight. 

The president of CVSA has a son that is an adult and struggles to get help in the ER. So she knows and is working on this. She has engaged the American college of Emergency Physicians on several occasions. She has also address the hospitals that her son goes to. When he is not in an episode. Anytime there is a challenge, she has used it as a teaching mechanism. 

I would suggest the same to you. Approach the ER department head about the condition and need for you to be given medications that work for you to stop the episode. Take info about CVS, info about CVSA, and ask how you guys can work together to make sure that you can be treated with out the added stress of feeling like you shouldn't go due to your treatment by the ER staff. 

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,750
Reply with quote  #4 
Steve, all helpful suggestions by Blynda.  I keep thinking about the cost of rescue you must endure in order to even get to the ER.

Are there any volunteer organizations in your area that you might be able to call for transport?  Here there are volunteer drivers for cancer patients.  I work with one man who drives to pick up patients and deliver them back home after their treatments.  Just an idea if you do not need critical medical care while rescue preps you for transport or during transport.

__________________
ginny CVSA Moderator
0
scooky1

Registered:
Posts: 132
Reply with quote  #5 
Thanks Guys

Yes it was a let down, 
Not as bad as my first broken heart when I was 18 y/o BUT! I'm not done yet with those meds! I am so dumb that I am going to rationalize this as "it may have been my fault" and I did this to my self.
Or, am I afraid to stop taking them ? Oh well I'm too busy to think about it right now, CVS is such a pain in the ass u-no I can't have a pet since I live alone the pet would be too much to look after and then those mutable night stays at the hospital.
Pretty frustrating but I think there may be something good to come of this, Oh yea! the first night when my meds kicked in and I went home, I had to wait for a taxi back home and met a nice girl who is the security guard at the hospital.
Really! should have seen this small woman in uniform with a COP type belt with hand cuffs and the works, super cute so yak yak for a while till my cab showed up, got her phone number and everything, smooth ha?
I'll let ya know what happens there.
So I think I will give it a little more time maybe it's working and I just don't see it right now, yet ,pretty soon.
What's going to happen if I get Alzheimer's? will forget I have CVS, maybe that's the cure just forget about it.
OK OK OK! this is getting wierd and believe me when I say "I know wierd" so I'll get back to you guys on all this pretty soon. 
                                                                   Thanks ,Steve

0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 1,092
Reply with quote  #6 
Steve, you seem to be in much better spirits. Glad to hear it!
__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
scooky1

Registered:
Posts: 132
Reply with quote  #7 
Oh Yea!
And another thing, That security girl I met at the ER! turns out she wants to meet my sister and not me! the story of my god dam life! and I am pretty sure she has no need to be saved from that kind of life by me! 
like they say at the barber shop "next" wonder what will come first, the Girl or the next trip to the ER. Hope it's a girl! and not one waring scrubs.
                                                  Sorry Guy's, kant stop the rant!
Be over it soon
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,750
Reply with quote  #8 
She might become a good friend for you!  romance comes and goes but friends can last a lifetime.  Sorry it did no work out for you.
__________________
ginny CVSA Moderator
0
scooky1

Registered:
Posts: 132
Reply with quote  #9 
Dear Ginny
Happy Mothers Day!
You sound like such a good girl. I am a 65 y/o male with CVS with a port-a-cath in my chest who spends more time in the hospital than anyone you have ever known except all these sickies on the board.
I was just kidding, not looking for love any more and can never have too many friends.
Thinking about getting Michael Jackson Dr. after he get out of jail.
it would be nice to have a Dr. come to the house and stop it at home in your bed.
It would be so much cheaper for all just Dailaudid on demand or maybe a drive thru!
                                              Uh-Oh starting to rant

 Happy mothers Day all!
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,750
Reply with quote  #10 
Hi Steve, I just responded to you on the other thread.  I am thinking about what might happen to improve things for you.

I know the whole thing with narcotics is coming back to bite people after being overprescribed for years.  Those who truly need the narcotic are having trouble getting it and then there is the lawsuit against manufacturers and the lack of inventory.

A doctor friend once told me that "for every problem there is a solution".  We just need to isolate the exact problem and then search for the solution.  Not easy but everything is doable.



__________________
ginny CVSA Moderator
0
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.