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        New Message Board Archives >> Jan-Mar 2003 >> JILL
        
(Message started by: RetUSN on Jan 29^th, 2003, 7:34am)

Title: JILL
Post by RetUSN on Jan 29^th, 2003, 7:34am

Hey everyone. I took Jill to the ER for the second time in five days. She started getting hit about 4:30 pm yesterday with her usual ringing in the ears. So we grab our coats and out the door we went. After 2 hours of waiting they finally saw her and the reaction was she is a drug addict. :o Needless to say I went off on them quietly but firm and told them she was just here Friday night and they should really look at her paper work from then. Of course they say okay, but never do it. After she got her "shot" in five minutes she was her self again. Well, almost she was a little drugged out. :P The doctor and nurse then realized she wasn't an addict and that epidsode ended. Then the nurse wanted to talk to Jill alone. I went out and had a cigarette and called home. When I came back in Jill said they wanted to ask her where she got her bruises on her arm from. I think the answer surprised the nurse when Jill told her that they did it Friday night trying to do an IV. Nothing more was said and we left at about
9 pm. Jill did not sleep last night and she and Barb were in bed together this morning when I got up for work. They are now back in our bed and I hope Jill gets some sleep. Will call later to find out. Sorry this is so long, but I need to vent. ;D The doctor had know idea what a cluster headache is so I referred him to some websites including this one. I doubt if he'll read it. Jill was telling me last night how wonderful you guys are and how much you helped her. I told her we will all beat this evil together. I want to thank you again from Barbara and me how much we appreciate everything you did and for opening our eyes to just how bad these clusters really are. Jill is strong and with Marty, me and Barbara and of course all of you we will defeat this. ;D

Title: Re: JILL
Post by brain_cramps on Jan 29^th, 2003, 8:49am

Ralph:

Thanks for the update on Jill.

ER trips are never fun. It wouldn't be near as bad if there was always the same people working there, and you got to know them. (not to mention the long waits) Unfortunately, this is usually not the case.

Years ago, I always got the same response : "You're not bleeding and nothing is broken, so you must be here for the drugs." To say its frustrating is an understatement. I wish there was some way they could understand the pain, the fear/anxiety, and the frustration.

Its great that you let the doctor know about OUCH and CH.com. As to if he'll actually do anything, that is a different story. "You can lead a horse to water, but you can't make him drink." I guess the same holds true for doctors.

Hopefully, she gets some much-deserved help in S.D. I'm sure it means the world to her to have the support of you and Barbara.

Hoping and praying for a break for Jill,
Grant

Title: Re: JILL
Post by Svenn on Jan 29^th, 2003, 9:23am

Ralph:

Thanks for the update of Jill.

So sorry to hear that Jill still get hit.
I have learned one thing since i came here to Clusterville amd thats "Together we are stronger"
Just vant to wish the very best to both of you

I just wont to add my medications for breaking out of cycle.But remember that i`m not a doc,just another clusterhead from Norway

Verapamil Retard 120mgX5-7/daily during cycle
Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few secons after that you are almost painfree
Prednisolone in high doze for 10 days 80mg
then over a 3 weeks periode step down like 60-40-30-20-10-5mg /daily

This is the miraclecure for me,but i`m not a doc.just another clusterhead from Norway

The very best from Svenn in Norway

Title: Re: JILL
Post by CathiP on Jan 29^th, 2003, 11:25am

Ralph-
Another day, another ER- Jill seemd to know them all by now- maybe she could work with Zagats on an ER tourbook..... ;D
Funny how consistent the ER's are- first, jump to conclusions, then ignore the chart(they can SEE she has problems that are not drug-related...sheesh!)- THEN, they knock her out with the newest narcotic, then, they look for signs of abuse.........'course, in the bargain, they like to make her walk, look in her eyes-especially the one manifesting Horner's....I just don't get it!!
Perhaps Jill & Barb can get a long nap in this morning- and when Jill wakes up, she'll have that fantastic smile on her face.
I'm sorry to hear it's back to the ER with Jill- I'm glad you are there to help her, Ralph.....hope you, too, can catch up on your rest. Thanks for keeping us posted.
Cathi

Title: Re: JILL
Post by RetUSN on Jan 29^th, 2003, 12:26pm

Jill and I are headed to San Diego Saturday morning. I am looking forward to meeting the man that saved my daughters life. :) I told Barbara if I liked the warm weather I may take up the job offer I had and just send her the money for our mortgage. :) I can't write what she said, but I'm sure I can't fit California there. ;D

Title: Re: JILL
Post by Edna on Jan 29^th, 2003, 1:06pm

Hey Ralph, it's ok to write WHATEVER you want to here.........right jonny?? lol

Seriously, I am soooooo very happy to hear such great news on both Jill and you guys her parents. And even more so to hear that her and her mom were stealing those moments of peaceful sleep. You'll never know how much that means to me to hear.

Give Jill a huge, tight hug from me when she wakes. And remind her we are all still here for her and keeping tabs on her progress.

Hug yourself and Barbara too, you both deserve it for being supporters of Jill and her hell she is going through right now.

Remember, too, we are also glad to have you aboard here too........you're family as well, even though you yourself are not the sufferer. There's still room for ya!!

Thanks for the update, and well wishes to the three of you, well the four, Jill's puppy too!

EDNA

Title: Re: JILL
Post by ZAIRA on Jan 29^th, 2003, 1:25pm

Hi Ralph,
I’m afraid to read that you’re bad :'(.
I think of Jill every day and I pray because the beast leaves her. :D
If I can help, I take lithium an verapamil. I take lithium’s tablet 300 gr and then 1200 mg, plus verapamil until max 960 mg. My neurologist tells that the quantity of meds I take is hight, but I have to take them otherwise the cluster doesn’t leave me.
When I have shadows I suddenly do or O2 and if it doesn’t work I have imitrex/imigran, so that the attack is not so violent... this is my experience and it works for me.

Hi Jill from me, and thanks to you to have written something about her.

Zaira from Italy :-*

Title: Re: JILL
Post by Roxy on Jan 29^th, 2003, 1:49pm

Ralph,

I am so sorry Jill is being hit so hard :'( .....but, I am so happy she has loving and caring parents around her. This has to help her so much. When you are alone.....that's when it is bad. Be sure to tell her that we are thinking of her....and hoping for the best.

Thanks for posting, and keep us informed,

Tracey

Title: Re: JILL
Post by domm on Jan 29^th, 2003, 7:43pm

Ralph - thanks for the update. I hope Jill gets the relief she is desparately looking for. Having you there has got to be some of the best "medicine" she could get.
PFDANs
domm

Title: Re: JILL
Post by 9erfan on Jan 29^th, 2003, 8:11pm

Thanks for the update Ralph. Even though Jill's pain has not gotten better, it is 100% easier for her to go through this with the support of you & Barbara.

I think I missed something...is Jill moving to San Diego? Or just going for an extended stay?

Please let Jill know that I (along with a lot of others) am still praying for her and that she gets some relief soon. I understand what it feels like to be at the end of your rope with these things!

Safe traveling to San Diego... :)

Virginia

Title: Re: JILL
Post by OneEyeBlind on Jan 29^th, 2003, 9:39pm

Ralph, I am so happy to hear that Jill is getting the support that she needs from her parents as well as Saint Marty. It's really a challenge understanding something that you can't see. With a cut or a bruise where there is something to kiss away. With cluster headaches ... well, quite frankly ... my husband has only seen me in a few episodes. I would rather hide from the world than to let someone see me so vulnerable. Good luck to you guys in your search for Jill's "miracle remedy".

Title: Re: JILL
Post by Opus on Jan 29^th, 2003, 10:32pm

Good to see you post again Ralph,
Supporters need to vent too. Jill has filled pages on the board, your post didn't come close. Tell Jill we are still praying for her.
Opus :D

Title: Re: JILL
Post by RetUSN on Jan 30^th, 2003, 8:43am

9erfan,

Jill and I are going to San Diego and I am coming back on Thrusday, she is staying. She will be going to UCSD pain clinic. We are not sure how long she will be there. As long as it takes. I am going out there to be with her and take care of any problems with medical insurance and because I am going to miss her so much while she is gone. Will give an update when I come back.
Ralph

Title: Re: JILL
Post by SommelierCH on Jan 30^th, 2003, 9:33am

Jill, Barbara and Ralph,

All the best to you. You deserve it. Ralph, thanks for keeping us up to date, and feel free to vent.

Wishing you PFDAN, Jill,

David J.

Title: Re: JILL
Post by cerebus on Jan 31^st, 2003, 11:26am

geez....here goes a little rant of my own.

Jill ....much love and best wishes. Jill's Mom and Pop, .... One thing I have learned to dispise, is doctors with a God complex, yet seem to have absolutely no understanding or concept of pain. I can't figure out why it is that many doctors think that just because they have graduated med school they are gods and cannot be wrong, let alone suggestable to ideas that they might not know everything. The facts are in order to become a doctor one simply needs to pass medical school ( not that this is an easy feat by any means) but one CAN pass with minimal effort in just about anything.
Lets face it "out of sight out of mind" is a rule that can be applied to many aspects of life, and since doctors spend little time on the subject of headaces in med school and probably less time in clinicals treating them. many doctors automatically dismiss the CH as a migraine and or sinus problem. Also in big cities drug addiction can be a major issue in ERs around the nation, so it is understandable that they might regard something that they have had little experience treating, and even less success treating with conventional methods begin to get suspicious of ones behavior and as such "We" get labeled drug seekers. There is an actual proceedure for this and the end result carries over to othe hospitals and clinics in the area.
sorry I went overboard on the rant here but I couldn't help myself. Just notice sometime when you are in the ER how much more work the nurses do than the doctors.
You will basically find that nurses are responsible for carrying out the docs orders and the doctor relies on the inormation the nurses provide at triage for diagnosis. Does this signal a problem? I'd say so.
Sorry again you are experiencing difficulty, but things will always get worse before they get better. Keep searching for a doc that has, at least, SOME knowledge of CH and a good neurologist.
Many wishes for relief for you and Jill.
Cerebus

P.S. Doctors (especially ER docs) spend at length many hours (100+) working with little time for mental and physical refreshment. The A.M.A sometime late last year held a meeting to discuss limiting the amount of hours doctors can be allowed to work in the ER or surgery without time off. A minimal effort at best of improving the quality of care "we" recieve as patients. Wouldn't it be better to make the criteria for med school graduation more intensive and difficult to pass?

Title: Re: JILL
Post by fubar on Jan 31^st, 2003, 1:24pm

Hi Folks,

Imagine for a moment... you are a child. You are extremely intelligent, motivated and capable of achieving basically anything you want to do in life. You want to be a doctor. Sure, it requires the most education of almost any profession before you can start practicing, but the work required is worth it, you think. Someday, you'll be improving the lives of patients and families... maybe you'll even save some lives along the way. How cool would that be?

Well, what we have today is a country full of disillusioned doctors struggling to stay up-to-date with the new treatments, fighting constantly with insurers about what is and is not necessary. Paying un-fuckin-believable malpractice insurance rates that essentially eat all your supposed doctorly income. Then, to make it even better, you have a country full of litigous citizens, ready to sue at the drop of a hat. And ERs full of drug addicts trying to exploit the system to get one last injection of morphine or demoral or whatever.

Come on. Please. Let's give the doctors a little bit of a break. Yes, CH is horrible and not well known enough. Yes, ERs don't know how to deal with us when we arrive. What do you expect? This health care system is broken. It isn't the doctors who should take all the blame, or much of it at all.

If you KNOW you're going to end up in the ER someday with a CH, it might be a good idea to bring some info with you. Medical history. CH information. You get the idea. You just can't expect hospitals to accept you at face value when it's more than likely they saw ten people just like you who were FAKING pain in order to get meds! They get de-sensitized to your pain before you ever arrive, so you better make a good case for yourself when you arrive, or you'll likely be lumped in with the rest of the medicine seekers that don't deserve treatment.

I just think we expect too much sometimes when we show up at an unfamiliar ER. Be prepared. I have my full medical history in a folder. It stays with me. If I end up on my way to the ER, you can bet they are going to know everything they need to know, and I will get the treatment I need.

-Fu

Title: Re: JILL
Post by Charlie on Jan 31^st, 2003, 9:02pm

Sorry about Jill but at least things are better than they were and will improve more and more. Count on it.

I agree that doctors are often put in the position of having to be too wary. I do not agree that it's the public and lawyers who make it so. The insurance companies have found an excuse to screw another group. Only the extreme cases make the "news." The millions of more than reasonable outcomes aren't interesting to cable news. It's like child kidnapping. It's incredibly rare. Children are safer today than at anytime in history. Cable news skews everything.

Mean old Charlie

Title: Re: JILL
Post by fubar on Jan 31^st, 2003, 9:48pm

Charlie,

It surely isn't just the fault of the insurers. Why do you think insurance rates are so damn high? They have to pay (somehow) for the cost of healthcare. The cost of healthcare includes covering the cost of litigation and settlements. No country in the world has anywhere near the amount of litigation and huge judgements that we have here in the good old USA. For every single reasonable medical malpractice lawsuit, you can find 100 cases of 'speculative' litigation, where lawyers are fishing the deep pocket ponds of the insurance companies and winning... not because they are justified or reasonable, but because we have a large population that thinks the insurance companies owe them (it's an ugly cycle).

Almost everybody participates in this stupid circle of escalating medical costs and ruining the system. Lawyers. The public.

I feel sorry for the doctors. My GP used to be primarily concerned with health issues. Now it seems like the only thing they focus on is figuring out how to get paid by the evil insurance companies. I don't think it's the insurance companies totally at fault. They have to survive (or else we are all completely screwed). Their 'business-first' approach that they have taken in the last 10 years is a direct result of the financial peril they are in because of litigation.

It started with the insurance compainies deciding they HAD to play hardball with controlling costs (some were criminal at this, I'll concede) but that forced doctors and hospitals to play the same game.

-Fu

Title: Re: JILL
Post by Mark C on Jan 31^st, 2003, 10:05pm

Fu is right on...again ;D
Fuckin lawyers.
http://overlawyered.com/

Title: Re: JILL
Post by cerebus on Feb 1^st, 2003, 2:02pm

Fu,
I'm sorry if I wasn't exactly clear on what my point was, I DO agree with you for the most part.
I also live in a city with a HUGE population of drug addicts with an equally large medical community. So maybe I was basing my opinion on my own experiences. Doctors do take alot of heat for mistakes and they do pay huge $$ amounts for malpractice insurance. I do not wish to take too much away from the physician, Lord knows where I'd be without one or even insurance for that matter. But lets also face facts, not all doctors are created equal. For every earnest Dr. out there there are three others who barely scraped by med school and are still allowed to parctice. Partially due ,no doubt, to a lack of physicians in some specialties.
My whole point was expressing a greater need for attention to rarities, CH , moya moya, and other rare disorders that to those who have it is not so rare.
In my case , I was kinda lucky, my GP was well versed in CH and was actually the first thing he suggested upon seeing my medical history. THAT is the key....here though. MY current physician is the FIRST doctor I have seen that actually READ and Disscussed my medical history with me, everyone else dismissed me as a sinus case or (heaven forbid) a migraineur. And I feel as if many others are experiencing the same thing.
Paractices vary from place to place, city to city, and many are trying to squeeze as many patients in as possible, and others may make you wait for months to get an appointment, the office policies differ. Even with all the injustices doctors face in courts and with insurance limitations, when is it that we ( no matter what the problem is) get treated as individuals?
In the same fashion as you , I go to the ER well armed with my history, and I don't give a rats ass if they have had 1000 addicts come in before me "faking" the exact same symptoms, I am an individual and should be regarded as such. If I were "faking it" it would eventually show. Point here is that MOST addicts and hypocondriacs will not go to such lengths that I do to get myself to a hospital for treatment, of course, there is always the exception to the rule.
Not many addicts are going to have someone drive them 10 miles to a specific ER ( because of insurance) have themselves litterally dragged in by a co-worker and spouse, plop down a file four inches thick with info on his/her condition on the receptionists desk, produce and insurance card, and ask for specific medications to treat thier condition. C'mon.
All I ever asked for was individual considderation and regardless of "other" situations at the ER I don't think it is too much to ask. After all, there is a course in bedisde manner in med school.

I just want to be treated properly...Is that so wroong g? LOL!

Cerebus

Title: Re: JILL
Post by fubar on Feb 1^st, 2003, 5:53pm

no worries Cerebus... we agree 100% on all that. Every profession has burnout and incompetence. Doctors are in a pretty special position. In fact, I think it is this 'special position' status that is being so threatened by the changing face of healthcare. It used to be that doctors were so revered, nobody could question their orders for diagnostics or treatment. Now, every decision is second guessed from a business-only perspective, and the doctors are losing their independence and status as 'the last word'.

If you imagine how hard it was to get through medical school and everything else it took to become a doctor, just to have the doctors status reduced to what it is becoming... jeez, I'd be fuckin pissed too. Just imagine the student loans they have to repay, only to find out that being a doctor now is not much better net pay than a plumber in some cities. That may seem extreme, but it's not far from reality today.

My doctor has seen his client base go from a steady loyal group, increasing in size each year, to and endless wave of new or old patients based on which insurance plans have gone bankrupt or merged. It's all business now, hardly a second for chat. I will miss him when he stops practicing, because I know it will be near impossible to find another doctor who will even have the chance to really get to know me.

In a way I was kinda saying your right to be treated like a human when you show up at the ER has unfortunately become dependent on your ability to prove your case quickly and decively when they evaluate you. Faking pain is easy, so nobody should be surprised when some of these doctors are skeptical when all they have to go on is same maniac in pain.

-Fu

Title: Re: JILL
Post by Lori on Feb 8^th, 2003, 10:46am

Retusn..from reading this post, I believe you are Jill's dad. I am really happy to hear you all are there for Jill and all has worked out in that area. I have been out of touch with Jill since Dec 10th, something like that because of personal circumstances, so I didn't know what was going on with her. I just know she was suffering something terrible. I hope she finds the help she needs and pray that relief will come her way soon. I did send her an email a day ago but not sure she got or can even check email right now. Anyway, it's just great to hear things are moving in the right direction for her.

Blessings to you all

Title: Re: JILL
Post by SFChris on Feb 8^th, 2003, 8:17pm

Fu - thanks for the rant on doctors and lawyers. My late father was a doctor (Ob/Gyn) who had to pay huge malpractice rates, and had to change how he practiced medicine to avoid friviolous lawsuits. After he died, his estate (that'd be my siblings and me) had to continue paying malpractice insurance (over $100K per year) for three years just in case someone sued the estate. They had us over a barrel. Anyway, thanks for offering another side of the story.

Chris

BTW - Sending positive energy and good thoughts to Jill

Title: Re: JILL
Post by hdbngr on Feb 14^th, 2003, 9:18am

My sister is a nurse in the ER, and she works her tail off, and I think she is very nice, but she explained why so many of us get this kind of treatment. She said on an average night in a Texas ER, they would get 6-8 "headache sufferers" that come in crying and carrying on. She said some are excellent actors, and the Docs and nurses get jaded really quickly when someone is really cranked up while they are being examined, then they turn off the tears and pull out the book they brought along with them to read. When you have a CH bad enough to go the ER, do you guys feel like lying there and reading a novel? She said there are regulars, and those who switch from ER to ER so that they aren't seen too often. Many are drug seekers, so we get "lumped" into the category. >:(

My last ER visit was a year ago, there were two others there with "headaches", both lucid and carrying on conversations. Both ended up shot full of narcotics. I don't mean to judge another's pain, but they drove themselves there, got the meds, then drove themselves home. Is it any wonder the Docs are skeptical?

Title: Re: JILL
Post by kim on Feb 14^th, 2003, 4:37pm

First, Jill's DAD! Happy you and Jill and mom are all on the same page! Blessings to you all and well wishes for Jill!!!!! :)

With a trauma injury (such as car accident) the burden is on the facility. With clusters, most of the time the burden is on US!!! It adds insult to injury and is so very difficult to handle when you are suffering.

Title: Re: JILL
Post by Charlie on Feb 14^th, 2003, 6:23pm

One more reason for clusterheads to carry an ID of some sort; a doctor's ID, medications and a number to call would be good too. It may not always work but I'm willing to bet that it would improve chances of getting attention when it's needed.

Just reiterating my old thing.

Charlie