[kennyren]

HI
DOS Any one suffer with Autonomic Dysreflexia when haveing ther bowels done or haveing sex i do is ther any thing you can take for it

[hillarymcarter]

If you stay on a regular bowel schedule, you shouldn't suffer from dysreflexia due to bowels.
As far as sex, if you ejaculate I think it is just going to be something you gotta live with.
Are you on any blood pressure medication. My hubby takes a low presser every morning which helps with dysreflexia. I think he takes metroprolol...I'd have to check the bottle but that looks right.

[Simon]

Hi
Dysreflexia shouldn't afflict you during bowel management, if it is somethings wrong.
Its a sign of overstimulation of the nervous system through irritation. It could be you suppositories, the manual technique or constipation (this is the most likely). You need to find the cause AD can kill you, it nearly killed me. You should at least have gtn spray on hand for attacks as this lowers your bp.
During sex, it seems normal on ejaculation, no that I've ever gone this route because I was advised not to by my consultant because of the AD risks.
Simon

[russ1]

I think it's all a question of scale. I get dysreflexic symptoms as my bowels move all the time. I get all the tingly feelings I get very flushed and very very occasionally I get the headache for a moment or two. I've been told not to be concerned as long as it's only a very short term effect.

HTH

Russ

[mttb14]

Hi Simon,

I wish you were a doctor you seem so knowledgable on so many subjects to do with SCI. My husband has been told that he is showing signs of AD due to not voiding fully when he urinates, he doesn't leak, he goes into retention. The more severe his pain is the less he gets the feeling he needs to urinate, he mostly knows he needs to urinate when his bladder is feeling full and hurting him. He has low dose blood pressure tablets to take and they seem to help regulate his bp but it does fluctuate when he needs to urinate. I keep on at him about trying to urinate every couple of hours to at least see if he can force some out, the problems seems to be partly linked to medication as well as SCI, but it is the devil or the deep blue sea. Chronic pain versus medication versus urinating, what are you supposed to do for the best!!!!!!!!!!

Twice in the past he has been hospitalised due to sky high blood pressure and on both occassions we said he was having trouble urinating, but no-one put 2 and 2 together and the problem was not really dealt with. A spinal consultant we saw recently insisted on referring John to a Urologist and now he has been told that he is going to have to learn to self catheterise because of the serious risk of AD. The urologist told us in no uncertain terms that AD can kill you or cause a stroke.

I don't know which is most frightening the risk of UTI or AD. Isn't SCI fun. He is an incomplete SCI with injury at C5 and C6. Thank you for sharing your knowledge with us, this site is wonderful. I have learnt more in 3 months from this site than in the past 8 years off the doctors who are responsible for looking after John.

Maria.

[keps]

I have found ad the most frightening aspect of my injury. The first time it happened I thought I was going to die.

I get the beginnings as soon as my bladder fills to about 500mls. The hairs on the back of my head and neck go up, and I feel shivery and yacky. If I fail to act quickly enough and my bladder starts to empty, the headache will come in.
Do manual evacuation can trigger a pounding headache. I have to wait for the pain to decrease before doing any more.

My GP gave me some GTN spray, on the advice of my siu. I have always managed to resolve the cause of subsequent attacks of ad, so have never used it. However, it is a great comfort to know it is there.

[Simon]

Hi
The urologist is right on 2 fronts actually re the self cathing. One, as he says, to avoid the AD which can kill you, it nearly killed me 6 months into my injury when a district nurse left me constipated by not doing my bowel management properly. Fortunately, it was a home visit pre hospital release and got AD when in physio there, my bp was 220 plus and I had an epileptic fit as a result. I was lucky to live.
Two, if your hubby has a high residual then he will get urinary reflux back into his kidneys which will damage them. I have the same issue - get this my residual when sat is 600mls!!!!!! This is with a sphincterotomy hence the self cathing (well my wife doing it anyway) as often as possible in the chair because I have hydronephrosis of my left kidney which may only be functioning at 25%, fortunately my right is okay at present.
Incidentally, a lot of my knowledge is thanks to my wife who was the nurse in charge when I had my epileptic fit and that was he first day in charge on the unit - she hadn't even hear of AD! Within a short time she was almost an expert.
I would still check out the bowel routine btw, its normally the bowel irritating the bladder which sets off AD.

[Bookjunky]

Only if my catheter tubing gets kinked and I start to back up.

[Simon]

What medication do you guys have for AD? I have GTN (spray not tablets as they only have shelf life of 6 weeks) and in event of bad attack Captopril as its short acting but longer acting than GTN.
After my initial episode decsibed above 6 months into injury which took months to rtify to stop just leaning on my abdomen setting off AD I didn't have an attack for 10yrs or more. Then it hit one night when being put to bed on a day I had not drunk enough. Of course, no frigin medication! Ever tried to explain AD to a locum GP who is doubting I even had a high bp (it had taken him 2hrs to get to the house)? Ambulance crews (not even paramedic crews) carry GTN we discovered and they said don't even bother going to casualty!
Fortunately, it subsided itself (bp only 160ish at worst)
Since then always had GTN Spray around. Never been used though yet!

[keps]

Simon, on Apr 30 2006, 04:57 PM, said:

What medication do you guys have for AD? I have GTN (spray not tablets as they only have shelf life of 6 weeks) and in event of bad attack Captopril as its short acting but longer acting than GTN.
After my initial episode decsibed above 6 months into injury which took months to rtify to stop just leaning on my abdomen setting off AD I didn't have an attack for 10yrs or more. Then it hit one night when being put to bed on a day I had not drunk enough. Of course, no frigin medication! Ever tried to explain AD to a locum GP who is doubting I even had a high bp (it had taken him 2hrs to get to the house)? Ambulance crews (not even paramedic crews) carry GTN we discovered and they said don't even bother going to casualty!
Fortunately, it subsided itself (bp only 160ish at worst)
Since then always had GTN Spray around. Never been used though yet!

Eek Simon! I didn't know GTN tablets had such a short shelf life. That would explain my doctor's reluctance to prescribe them over the spray.
Funnily enough, when I went to casualty twice last year, after my first two attacks of AD, I got the same doctor. Amazingly, he knew what AD was, as he had a quad friend! I had actually resolved the cause of the attacks before I went to hospital (full bladder), but went anyway as my head was still killing and I was terrified. But, this doctor was understanding, which helped enormously.

I've had the GTN spray since shortly after that, but never used it yet (Had to have a test squirt - in mid air - to check it worked ok, though!).

My highest recorded bp was 186/90, but that wasn't the worst attack (usual bp is 100/60).
I never go anywhere without the spray. It is always on my mind that I might have an attack when out, and not be able to solve the cause quickly.

[In The Wind]

Talk about a smack upside the head. I’ve had AD attacks that I swear my teeth rattled. Some of the worst set off by someone’s voice (?),

No problems with bowels though and have yet to experience sex since injury, my AD problems have tapered off considerably in this past few years… I’ve developed more f a reflex bladder than I can mostly control and empty…

[mttb14]

Hi,

No one has mentioned this spray to John, the first time he had AD even though we and no one else twigged that was what it was, 5 days in hospital and fluctuation bp. When he was rushed in his bp was 220/165 and I thought the GP was going to pass out, he was redder in the face than John was. He was in the High Dependancy ward for 2 days and then moved to a ward, but still no one mentioned or suggested AD. He was sent home and we just had to deal with the situation as best we could.

I understand the treatment received in the Canary Islands as the was a language barrier, but to be honest he did seem to have better treatment there and they got his bp down and it stayed down, they gave him several drips as we think he had dy-hydrated due to heat.

Have you seen the card you can down load from the AD sight which describes AD and states the medical treatment you require, I have printed one off and laminated it for John to carry in his wallet. I'm also going to print a few more off and carry one in my purse with his name on it and one in each of our vehicles, I've shown it to all of our family, just in case it happens when John is with them.

I understand you when you say you thought you were going to die, John was with our sister in law and she was bringing him home and she thought he was going to die in the car and she asked him to explain as best he could how to rescusitate someone as he was a first aider in work years ago.

She drove whilst he explained to her how to do life saving first aid. I took him straight to GP surgery and told the receptionist that my husband was in the car and I thought he was dying, he was struggling to breath, he had chest pains, his head was exploding, he was sweating, but freezing. In fairness a GP saw him immediately and phoned A&E and said I was taking him there, but still no-one mentioned AD.

We now understand why the urologist was so annoyed that John had not been to see him previously, 4 years ago when the signs of AD were first showing. He went back and for the surgery complaining of sinus problems, really pounding headaches, high bp, problems with urinating and a funny feeling like butterflies in his chest near his heart. All signs of AD, why don't they teach doctors about something which is so complex and life threatening.

We are going to have to ask about this spray, what is it and when do you use it.

Maria

[Simon]

So where on earth was John treated for his spinal injury you should have been briefed in AD?

[mttb14]

Hi Simon,

John was working as a butcher and his boss was putting a walkway on the top of a refridgerated lorry trailer unit. John had to pick up the 8 ft x 4 ft sterling chip boards from the ground, lift them up andthen push them up to the men on top of the fridge, they weighed about 60 pound and he wasn't allowed to lean them against the fridge to push them up the 10 or 12 ft, as his boss didn't want his fridge scratched. He did the first and then whilst doing the second he felt his neck pop and was in immense pain.

He thought he had pulled a muscle and hope it would get better. when he saw a GP he was told it was spondulitus, even though the GP didn't even examine him. He was popping pain killers all the time and after 6 months I changed his surgery, when he went to the new surgery he was sent for x-rays and an mri. It was then discovered that he had slipped discs, but they were pushing in not out C5 and C6 where the main problem discs, but there was slight changes at C4 and C7 also.

This went on from 1998 till 2002 when he progressively got worse and the neurosurgeon called him in after new mri scans showed he was borderline quad according to the medical reports we have seen, but no-one has really explained anything to us. We knew he was having trouble walking and the tendons in his arms and behind his knees have been giving him terrible problems with pain and spasticity. October, 2002 he had a decompression and it was then reported in the medical reports that he had lesions on the spinal cord.

Still at this point no-one told us what to expect or explained anything to us. University of Wales hospital, but they never really spoke to us about anything, and we certainly never knew or realised that things were this serious. When they operated they told us that if they damaged the spinal cord he would end up quad, but they never told us that he was on the verge of it anyway. Luckily, it is only the left side of the cord that is damaged, so he is an incomplete, but the problems he has with chronic pain, spasms and spasticity are really bad.

Luckily we have through a claim for compensation been to see a spinal rehabilitation expert Dr Baker, and it was him that told us what was going on and that John should have been under a spinal hospital, but when we went to Rookwood Hospital in Cardiff, they saw him once, examined him and said that his problems were more associated with pain and discharged him, so that was a waste of time. Dr Baker cannot believe that they have discharged him, John has been told that his injury will get progressively worse and so far each year it has, and he has been told he will be in a wheel chair some if not all of the time in the near future.

This Dr Baker has been our saviour as it is because of him that John was sent to see a Urologist due to problems voiding, we did not know how serious that was either. As previously mentioned twice he has been rushed in with what we know now to be AD, but nobody linked it to his neck injury apart from Dr Baker at a much later date and now the urologist. The urologist was well pissed off that John had not been referred to him in 2002 when the first signs of problems with urinating showed up.

We have asked Dr Baker if we can see him privately after the Court case is over as he is the only one we trust, and he emails and phones us at home, he is and has been really concerned about John.

Hope that answers any questions, this site has answered more questions in 3 months than we've had in 8 years. Nobody told us that C5 and C6 incompletes have problems with legs and arms, John has been made to feel really stuppid when he has been trying to explain to doctors in the past the problems he has with tendons in elbows and knees going so tight that the pain is unbearable. They just look at him stuppid.

Now you can see why all of your knowledge and answers written in english means so much to us.

Maria

This post has been edited by mttb14: 05 May 2006 - 06:29 PM

[mttb14]

Hi,

Do any of you know how long it takes under the NHS in the uk to send a catheter nurse to see you when a Urologist wants you to be shown how to do self catheterisation.

The Urologist told us that this was really important to avoid AD, but we still haven't heard from her, it is now two weeks and I know that is not long, but John keeps preparing himself and then we don't hear anything, so he has to prepare himself all over again.

Thanking you in anticipation of your answers.

Maria

[In The Wind]

Oh my God. Does that story not scare the hell out of ya? Yea, Doctors my ear!

Mttb, I have a manual given to me by the Shepherd Center in Atlanta, GA. It’s where I went for rehab and it’s something that every patient gets called “The personal care manual”. It covers everything you must know to live with SCI. I can convert it into pdf and email it to you. The entire book is maybe 150 pages and will take time to scan in, I think I’ll start on that today, I’ll pm ya,

[mttb14]

Thanks in the wind, we would really appreciate it.

This site is where we have picked up our small knowledge and believe me we have learned more in 3 months than 8 years.

email address:- mttb14@lineone.net

Thanks again.

[Simon]

Hi Maria (mttb14)
Have you got the SIA's moving forward publication? Very good. If you need further help just PM me
http://www.spinal.co.uk/publications/defau...&step=4#forward

[sandyrun]

Be aware that the sprays also have expiration dates.

[Simon]

Hi Sandy
yes they do but if unopened its unlikely they will loose their therapeutic values.

[kennyren]

In The Wind, on May 5 2006, 08:35 PM, said:

Oh my God. Does that story not scare the hell out of ya? Yea, Doctors my ear!

Mttb, I have a manual given to me by the Shepherd Center in Atlanta, GA. It’s where I went for rehab and it’s something that every patient gets called “The personal care manual”. It covers everything you must know to live with SCI. I can convert it into pdf and email it to you. The entire book is maybe 150 pages and will take time to scan in, I think I’ll start on that today, I’ll pm ya,

WHAT IS A PERSONAL MANUAL IS IT YOUR BOWELS

[In The Wind]

It covers just about everything

[In The Wind]

OK, the entire manual is online Here

I hope this helps everyone...

[mttb14]

Hi In the Wind,

I've printed some pages off and saved it to my favourites listunder health.

I'm sure that will benefit more people than just John, so a big thank you.

Maria

[jamesgirl]

AD is normal when your bowels move, learn to concentrate on your breathing to get through it. Have the person that's doing your program be less aggressive during your program. Focus the discomfort on something. While having sex maybe back off a bit on the motion that's causing the AD. For example if you are having AD when the head of your penis is rubbed then move down a bit to a part of your penis that's less sensitive.

Good Luck!

kennyren, on Oct 30 2005, 07:14 AM, said:

HI
DOS Any one suffer with Autonomic Dysreflexia when haveing ther bowels done or haveing sex i do is ther any thing you can take for it

[Irenec]

Simon, on Apr 30 2006, 01:57 PM, said:

Hi
The urologist is right on 2 fronts actually re the self cathing. One, as he says, to avoid the AD which can kill you, it nearly killed me 6 months into my injury when a district nurse left me constipated by not doing my bowel management properly. Fortunately, it was a home visit pre hospital release and got AD when in physio there, my bp was 220 plus and I had an epileptic fit as a result. I was lucky to live.
Two, if your hubby has a high residual then he will get urinary reflux back into his kidneys which will damage them. I have the same issue - get this my residual when sat is 600mls!!!!!! This is with a sphincterotomy hence the self cathing (well my wife doing it anyway) as often as possible in the chair because I have hydronephrosis of my left kidney which may only be functioning at 25%, fortunately my right is okay at present.
Incidentally, a lot of my knowledge is thanks to my wife who was the nurse in charge when I had my epileptic fit and that was he first day in charge on the unit - she hadn't even hear of AD! Within a short time she was almost an expert.
I would still check out the bowel routine btw, its normally the bowel irritating the bladder which sets off AD.

Hi Simon
Reading the last line of this post- In what way can the bowel irritate the bladder setting off AD.
Thankyou
Irenec

This post has been edited by Irenec: 06 April 2008 - 10:23 AM

[Simon]

Simon, on Apr 30 2006, 01:57 PM, said:

Hi
The urologist is right on 2 fronts actually re the self cathing. One, as he says, to avoid the AD which can kill you, it nearly killed me 6 months into my injury when a district nurse left me constipated by not doing my bowel management properly. Fortunately, it was a home visit pre hospital release and got AD when in physio there, my bp was 220 plus and I had an epileptic fit as a result. I was lucky to live.
Two, if your hubby has a high residual then he will get urinary reflux back into his kidneys which will damage them. I have the same issue - get this my residual when sat is 600mls!!!!!! This is with a sphincterotomy hence the self cathing (well my wife doing it anyway) as often as possible in the chair because I have hydronephrosis of my left kidney which may only be functioning at 25%, fortunately my right is okay at present.
Incidentally, a lot of my knowledge is thanks to my wife who was the nurse in charge when I had my epileptic fit and that was he first day in charge on the unit - she hadn't even hear of AD! Within a short time she was almost an expert.
I would still check out the bowel routine btw, its normally the bowel irritating the bladder which sets off AD.

Replied via email to you but you can and should carry ready to take take / have at all times GTN spray or tablets. Its short acting and should only be used when you get a headache from AD and once it goes spit the tablet out immediately. You can always have another if it returns but its just as dangerous to have low bp as high.
Your gp can prescribe it but spray is best as the tabs efficacy wears off in only a few weeks, the spray retains its medical effect until its use by date.
Simon

[qbounce]

I had a tear in my inner bowel region (due to an overly enthusiastic caregivers dig-stem). I was perscribed Lidocaine jelly, to be put in the nether region. It numbs the area for approx. 45min, while evacuating and no AD to be felt!! Of course, before I went to the doctors my headaches from AD were so bad I thought my brain would EXPLODE!!!

Anyway, Lidocaine is a great sensation supressor too!!

[Mario]

wow... i'm so glad i found this site and forum...

i'm a C6 quad. and i've been worried for years about AD, but not 1 of my doctors, nurses, therapists ever told me what it was, how to prevent it or how to treat it... now i know, through personal experiences, what it is -- but ive had 2 near fatal episodes... and i still dont have and "emergency" quick treatment/medication plan to use during an AD attack... i dont even know where to begin, but heres my story:

i was paralyzed in a high school football game when i was 16yrs old, nearly 23 years ago.. i am now 39. i have AD symptons every day, but mostly the "mild" variety -- sweats on forehead and shoulders, opening of nasal passages, mild tingly feelings, slight slight head throbbing (not really a headache), flushed. these come when i urinate mostly but also when i sit too long in one position. i do have more severe AD during my bowel program when im manually stimulated sometimes with sweat dripping off my head and upper arms/shoulder, but still manageable pain-wise... and by no means dangerous pain or headaches or high blood pressure.

however during my initial hospital stay, at the start of my rehab approx 3months after my injury, i had my first AD attack. and 12years into my injury, i had a second AD attack. during both of these attacks my blood pressure rose to approx 250/180. my first attack, i believe, was caused by a full bladder... i was being intermittently catheterized every 2hrs at the time, and i was never told a cause (i was 16 and newly paralyzed, and i didnt really have parents around to help me ask the right questions). the AD attacks lasted for a day or 2, and when they went away no one ever even told me what i was going through or why.

12yrs into my injury, i had a severe AD bout that lasted for nearly a week every time i urinated (now i was wearing an external catheter. i have a spastic bladder that voids completely with no residual). this 2nd AD attack started when my wife was doing my bowel program. im pretty sure she was being too aggressive and tore or ripped something near/on/around my prostate because i only got attacks during urination for about 1week after the initial attack that occurred during the bowel program. this set of attacks was so painful, it brought me to tears every time i could feel it coming.. and my head throbbed with the most violent pain id ever experienced in my life, bar none.

i went to the hospital, but they ALWAYS know less than i do and i always feel like i have to teach them what AD is. i did see a urologist after this 2nd attack. he put me on a medication (minipress also known as prazozin) to be taken 3times daily. but didnt know of any meds i could take during a dangerous attack, only this minipress to take as a preventative measure.

i have experienced AD during ejaculation... but sometimes my AD feels good to me. when i get the "mild" AD during urination or ejaculation it feels good. yes, the actual low low preliminary AD "feelings" or symptoms feel good to me. however, if i manage to ejaculate more than once per sex session or drink alot, and therefor urinate alot, i begain to feel painful AD.

my main concern is that i will one day die from an AD attack because no one, including my doctor, will know what to do or how to relieve the attack immediately. im reading here of Captopril and gtn spray/tablets (both of which ive never heard of in my entire life as a quad, and apparently my doctors havent either since they never mentioned). but can you guys lend me some guidance? obviously i need an "emergency" plan that not only includes one or both of those medications, but also i need to educate my family and my doctors.

any help/info you guys can further pass on would be greatly appreciated.

[nomis]

Hi Mario
As you've no doubt noticed from this thread that you're by no means the only one to become a victim to ignorance in the medical profession re AD. You have the opportunity now to help fill in your doctor's education.

I'd suggest you print out the article on this page and take it along to your doctor to read. If he follows the common apparently worldwide reaction of doctors he will pretend he knows all about it and hopefully will look it up for further info (probably after you leave).

Also check through the thread and write down the name of any meds people say they use. The one I'm familiar with is Nifedipine which treats high blood pressure and is commonly taken by people with ongoing angina.

This post has been edited by nomis: 20 May 2008 - 12:14 PM