10 replies to this topic

[nance]

MY NEPHEW WHO WAS INJURED IN AN ROLLOVER IN AUGUST OF LAST YEAR HAS BEEN HAVING EPISODES WITH AD, HE WAS RELEASED FROM REHAB DAY AFTER THANKSGIVING (NO EPISODES THE WHOLE TIME IN HOSPITAL OR REHAB) WE GET HIM HOME FROM THE HOSPITAL AND AFTER ONLY ONE WEEK HOME HE HAD HIS FIRST EPISODE AND THEY HAVE BEEN DAILY EVER SINCE. WITH THE FIRST EPISODE WE CALLED PARAMEDICS AND SENT HIM TO ER WHERE I HONESTLY THOUGHT HE WOULD DIE BEFORE THEY ATTEMPTED TO DO ANYTHING. HIS BLOOD PRESSURE GOT SO HIGH HE STARTED SEIZING AND THEN BECAME COMBATIVE, I TRIED TO TELL THE ER NURSES AND DR THAT IT COULD POSSIBLY BE AN EPISODE OF AUTONOMIC DYSREFLEXIA BUT THEY JUST IGNORED AS IF I DIDN'T KNOW WHAT I WAS TALKING ABOUT. I'VE DONE ALOT OF RESEARCH ABOUT AD AND HAVE LEARNED ALOT ABOUT IT, BUT WE JUST CANT SEEM TO FIND OUT WHY THIS KEEPS HAPPENING, IF THERE IS ANYONE THAT HAS EVER HAD EPISODES OF AD I WOULD GREATLY APPRECIATE ANY INFORMATION YOU MAY HAVE, WE HAVE ATTEMPTED EVERYTHING FROM STRAIGHT CATHING, CHECKING FOR IMPACTION, GETTING TIGHT CLOTHING OFF, HE HAS NO PRESSURE SORES, HIS URINE WAS CHECKED FOR UTI. IT'S SUCH A SCARY SITUATION WHEN THIS HAPPENS, AND WE CAN'T UNDERSTAND WHY NOW AT HOME AND NOT IN THE HOSPITAL. OUR FAMILY WOULD APPRECIATE ANY INFORMATION ANYONE MAY HAVE, ESPECIALLY IF YOU HAVE EVER EXPERIENCED IT FIRST HAND. THANKS ALOT AND GOD BLESS ALL OF YOU.

NANCE

[Kaz=1983]

Hello ... I'm not a Doctor or anything but being a C5/C6 quad I have had experience with autonomic dysreflexia, for me like most it's mainly been bladder problems that has caused it but I had a period were I was dysreflex everyday but it turned out I had stones block my mema-cath stent, it can be very tricky and take awhile to figure out whats the cause ...

Does he get dysrflexic whilst lying down?

If no, how much time did/does he spend in bed at hospital compared to home?

Have you seen any of the doctors who were the ones over seeing your nephew at rehab?

But honestly you need to go see or find a doctor you trust and has have expierence in this department and try to find the cause of all this.

Oh and make sure you go back to the same hospital everytime he needs medical attention, that way they will all his medical history on hand and hopefully will learn from the mistakes i.e. not listening to you when you're telling them it's autonomic dysreflexia ...

Edited by Kaz=1983, 07 January 2009 - 08:47 AM.

[Davey]

HI MY NAME IS DAVEY. I FULLY UNDERSTAND HOW YOUR NEPHEW MUST BE FEELING AS I HAVE BEEN A C4/5 QUAD FOR 21 YEARS, AND THE ONE THING I NEVER WANT TO EXPERIENCE AGAIN IS AN AD ATTACK. IF YOUR NEPHEW HAS NOT HAD AN AD ATTACKS IN REHAB THERE MUST BE SOMETHING UNDERLYING IN WHAT HE DO'S AT HOME. USUALY WHEN I THINK IM GOING TO HAVE AN ATTACK I TO A CHECK LIST IE: BLOCKED CATHERTER, BOWELS, TIGHT CLOTHS, POSISTIONING IN CHAIR, TIGHT SHOES AND THIS MIGHT SOUND A BIT STRANGE BUT TOE AND FINGER NAILS THAT ARE TO LONG. I HOPE YOU FIND THIS INFORMATION HELPFULL AND HE GETS SORTED SOO.N

[nance]

Kaz=1983, on Jan 7 2009, 03:45 AM, said:

Hello ... I'm not a Doctor or anything but being a C5/C6 quad I have had experience with autonomic dysreflexia, for me like most it's mainly been bladder problems that has caused it but I had a period were I was dysreflex everyday but it turned out I had stones block my mema-cath stent, it can be very tricky and take awhile to figure out whats the cause ...

Does he get dysrflexic whilst lying down?

If no, how much time did/does he spend in bed at hospital compared to home?

Have you seen any of the doctors who were the ones over seeing your nephew at rehab?

But honestly you need to go see or find a doctor you trust and has have expierence in this department and try to find the cause of all this.

Oh and make sure you go back to the same hospital everytime he needs medical attention, that way they will all his medical history on hand and hopefully will learn from the mistakes i.e. not listening to you when you're telling them it's autonomic dysreflexia ...

HI,

AS A MATTER OF FACT HE IS USUALLY ALWAYS IN THE BED WHEN HE HAS AN EPISODE WITH AD, IT WILL USUALLY EVEN WAKE HIM UP FROM A DEAD SLEEP WITH HIS HEAD POUNDING. THIS STUFF IS A VERY SCARY SITUATION AND HE'S EVEN SCARED TO GO TO SLEEP AT NIGHT BECAUSE OF IT, HE IS TO START OUT PATIENT REHAB TODAY AND WE ARE HOPING TO FIND HIM SOME GOOD DOCTORS, HE HAS ONLY BEEN OUT OF IN PATIENT-REHAB A FEW WEEKS AND WAS SENT HOME ONLY TO HIS PRIMARY CARE PHYSICIAN WITH NO EXPERIENCE WITH SPINAL CORD INJURIES, HE JUST REFILLS HIS MEDICATIONS FOR HIM WITH NO EXAMS OR ANYTHING. WE HAVE HAD ALOT OF PROBLEMS LOCATING SPECIALISTS FOR HIM BECAUSE OF HIS INSURANCE SITUATION, HE IS NOW ON MEDICAID BUT EVERYONE WE HAVE CONTACTED DOESN'T ACCEPT MEDICAID. OH AND BY THE WAY THE LAST HOSPITAL HE WAS IN TOLD US NOT TO COME BACK BECAUSE THEY WERE NOT EQUIPPED TO TAKE CARE OF SOMEONE WITH HIS INJURIES. (REALLY SCARY BUT TRUE). WE EVEN TRIED TO HAVE HIM TRANSFERRED FROM THAT HOSPITAL TO ANOTHER AND THE OTHER WOULDN'T ACCEPT HIS TRANSFER SO HE HAD TO STAY WHERE HE WAS IN ICU FOR TWO DAYS, AND THEN RELEASED TO US TO GO HOME AND WE HAVE BEEN DEALING WITH THE AD EPISODES OURSELVES. THANK YOU FOR ALL THE INFORMATION YOU HAVE GIVEN US AND IF YOU MAY THINK OF ANYTHING ELSE PLEASE LET US KNOW. WE ARE STILL LEARNING AND APPRECIATE ANY ADVISE OR INFO YOU MAY HAVE. THANKS AGAIN AND GOD BLESS.


NANCE

[nance]

Davey, on Jan 7 2009, 12:35 PM, said:

HI MY NAME IS DAVEY. I FULLY UNDERSTAND HOW YOUR NEPHEW MUST BE FEELING AS I HAVE BEEN A C4/5 QUAD FOR 21 YEARS, AND THE ONE THING I NEVER WANT TO EXPERIENCE AGAIN IS AN AD ATTACK. IF YOUR NEPHEW HAS NOT HAD AN AD ATTACKS IN REHAB THERE MUST BE SOMETHING UNDERLYING IN WHAT HE DO'S AT HOME. USUALY WHEN I THINK IM GOING TO HAVE AN ATTACK I TO A CHECK LIST IE: BLOCKED CATHERTER, BOWELS, TIGHT CLOTHS, POSISTIONING IN CHAIR, TIGHT SHOES AND THIS MIGHT SOUND A BIT STRANGE BUT TOE AND FINGER NAILS THAT ARE TO LONG. I HOPE YOU FIND THIS INFORMATION HELPFULL AND HE GETS SORTED SOO.N

HI DAVEY,

THANKS FOR THE REPLY, HE DIDN'T HAVE AN AD ATTACK UNTIL RETURNING HOME, I REALLY DON'T KNOW OF ANYTHING WE ARE DOING DIFFERENT AT HOME THAN THEY WERE DOING IN REHAB/HOSPITAL, WE KEEP HIM TURNED AND EVEN WHEN IN HIS CHAIR WE GIVE HIM PRESSURE RELIEF. HE IS TO START OUT PATIENT REHAB TODAY AND HOPING WE CAN GET SOME INFORMATION WHILE THERE. HE WAS RELEASED FROM IN PATIENT REHAB IN BIRMINGHAM DAY AFTER THANKSGIVING, THEY RELEASED HIM TO HIS PRIMARY CARE PHYSICIAN WITH NO SPINAL CORD INJURY EXPERIENCE AND I HONESTLY BELIEVE IT SCARES HIM TO HAVE HIM AS A PATIENT, HE HAS TRIED TO DROP HIM AND HE HAS NO ONE AT THE TIME WE HAVE BEEN SEARCHING FOR SOME GOOD SPECIALISTS BUT HAVE HAD PROBLEMS WITH INSURANCE SITUATIONS. WELL AGAIN THANKS A MILLION FOR THE REPLY AND IF YOU CAN THINK OF ANYTHING PLEASE LET US KNOW.


THANKS AGAIN AND GOD BLESS,

NANCE

[Kaz=1983]

nance, on Jan 8 2009, 06:58 AM, said:

HI,

AS A MATTER OF FACT HE IS USUALLY ALWAYS IN THE BED WHEN HE HAS AN EPISODE WITH AD, IT WILL USUALLY EVEN WAKE HIM UP FROM A DEAD SLEEP WITH HIS HEAD POUNDING. THIS STUFF IS A VERY SCARY SITUATION AND HE'S EVEN SCARED TO GO TO SLEEP AT NIGHT BECAUSE OF IT, HE IS TO START OUT PATIENT REHAB TODAY AND WE ARE HOPING TO FIND HIM SOME GOOD DOCTORS, HE HAS ONLY BEEN OUT OF IN PATIENT-REHAB A FEW WEEKS AND WAS SENT HOME ONLY TO HIS PRIMARY CARE PHYSICIAN WITH NO EXPERIENCE WITH SPINAL CORD INJURIES, HE JUST REFILLS HIS MEDICATIONS FOR HIM WITH NO EXAMS OR ANYTHING. WE HAVE HAD ALOT OF PROBLEMS LOCATING SPECIALISTS FOR HIM BECAUSE OF HIS INSURANCE SITUATION, HE IS NOW ON MEDICAID BUT EVERYONE WE HAVE CONTACTED DOESN'T ACCEPT MEDICAID. OH AND BY THE WAY THE LAST HOSPITAL HE WAS IN TOLD US NOT TO COME BACK BECAUSE THEY WERE NOT EQUIPPED TO TAKE CARE OF SOMEONE WITH HIS INJURIES. (REALLY SCARY BUT TRUE). WE EVEN TRIED TO HAVE HIM TRANSFERRED FROM THAT HOSPITAL TO ANOTHER AND THE OTHER WOULDN'T ACCEPT HIS TRANSFER SO HE HAD TO STAY WHERE HE WAS IN ICU FOR TWO DAYS, AND THEN RELEASED TO US TO GO HOME AND WE HAVE BEEN DEALING WITH THE AD EPISODES OURSELVES. THANK YOU FOR ALL THE INFORMATION YOU HAVE GIVEN US AND IF YOU MAY THINK OF ANYTHING ELSE PLEASE LET US KNOW. WE ARE STILL LEARNING AND APPRECIATE ANY ADVISE OR INFO YOU MAY HAVE. THANKS AGAIN AND GOD BLESS.


NANCE

Good luck with the fight ...

Edited by Kaz=1983, 08 January 2009 - 05:04 AM.

[eujei]

If you re pressure relieving him often, pressure is not the problem.. i believe pressure only givs ad atacks if youre standing in an open wound..

how are his bowels working?

does he have a permant cath?

did he fell recently? can he be injured internally in any way?

How does the ad attack stop?

[nance]

eujei, on Jan 8 2009, 05:02 AM, said:

If you re pressure relieving him often, pressure is not the problem.. i believe pressure only givs ad atacks if youre standing in an open wound..

how are his bowels working?

does he have a permant cath?

did he fell recently? can he be injured internally in any way?

How does the ad attack stop?

His bowels are ok, he wears a condom cath and if he hasn't voided enough to satisfy us we straight cath him, he has had no falls of any kind and as far as we know he is fine internally. He started out patient rehab yesterday and did well all day, when I put him to bed last night he had another attack, about five minutes after lying him in the bed, i sat him up at 90 degrees and gave him something for his blood pressure which had risen to 185/123 and a pain pill which started working immediately and brought his pressure down and relieved his headache. This has been a daily thing for about 3 weeks now, when we sent him out to the hospital with his first attack I thought they were going to let him die so we do what we can at home first.

[eujei]

have to try to lay him in bed during the afternoon?
does he have an ad attack if you do this?
you mention he has them usually at night.. does he had them sitting in the chair?

Edited by eujei, 11 January 2009 - 12:06 PM.

[Izziwhizzi]

Hi Nance

A couple of pointers from my AD experience over 25+ years.

I think my stronger/easier/more frequent AD attacks come when I am dehydrated. Heat stroke does it very easily for me (and I don't have to sit out in the heat/sun for long). I note you live in Florida. When its hot you have to keep up fluids - and this is not sodas - its lots of water. I can also get dehydrated enough to bring an episode of AD on from eating the wrong foods, such as a hot Indian. I call it Indian poisoning (I love Indian food) so I combat that with 2 pints of water before I go to bed.

You seem to be checking most usual things - bowels, caths, but has he got any ingrowing toe nails? that always sets me off. Think outside the box as much as poss when looking for an AD stimulus.

Also recently for the first time in 25 years + I've been awoken with AD headaches from a bad position in bed. I sleep on my side, foetus style, with a pillow between my knees, and sometimes my top leg spasms straight. For years this has been OK, but as I said its started AD off recently.

Also when you've had an AD episode you are weakened to it and somehow more suseptible to another turn with much less stimulus.

Lying down will also slightly increase blood pressure, but not up usually to those horrible levels you stated.

Have a read here and also take a look on the 'care cure forum' (google it) to see what other suggestions they have on AD too.

Good luck and please message again, if anyone can offer any help here I'm sure they will.

I xx

Edited by Izziwhizzi, 12 January 2009 - 10:37 AM.

[din]

Hi ,
My brother-in- law (lives in INDIA) met with a car accident in April 09,he has c5-c6 injury & now he is in rehab center in Delhi .....Last week while he was sleeping , he experienced shooting pain in his neck & then he had seizure they took him to ICU & they said he had AD.His BP was very high & he had 3 seizures ....
Now he is fine but his BP is not going down even after taking bp meds ....Doctors did EEG& MRI but still couldnt find out why his BP is going so high ...
Actually my sister is so worried about that episode ,she afraids if she takes him back to home ,how can she will take care of him if he will have again autonomic dysrexia & seizure...In India there is no 911 service
Any suggestions....
Please help...
Dini