Help Needed! Sudden unexplained Autonomic Dysreflexia- need Dr. Wise/Nurse or Advise

[sherocksandsherolls]

I have had two attacks of AD Autonomic dysreflexia is the last week four days apart. First was after a swim, had to pee as usual?transferred to toilet and had a sudden quick rectal spasm?and fast onslaught of huge waves of head pain?throbbing in temples..typical AD headache but really bad and so fast onset. Tried to finish peeing, transferred to chair, and went to get my nitro paste..put on and called 911.

They did brain MRI, ct of head and neck, xray of stomach. All good except stomach xray showed constipation but no impaction. I told them constipation is not abnormal for me?rather and I never get severe AD from it..have gone days without going and have been bloated, and full many times in my 30+ years and never had this type of sudden swift AD episode.

I am 49 c 6-7 incomplete Asia B injured at 18. I have had AD before but with slow progressive headache which is resolved via Tylenol, rest and valium if not tempered.

I am accustomed to mild AD with sweating and chills when I had to pee badly or during Bowel program (enemeez).

First episode They discharged me with:

Baclofen (as needed) for spasms Spasms are normal for me and do not cause AD or need medication..

new nitro paste- for use for another AD crisis (it saved my life the last time as my normal BP is under 90/40 and it was 140/? When medics arrived after two doses of nitro I administered myself before they arrived.

Butalbital APA ?caffiene tablets 50-325-40mg to take with nitro paste for headache -severe

Naproxen Sodium Tablets ?said to take if I had the start of a normal ad headache..not a crisis.

Second attack happened 2^nd day after discharge from hospital, with no meds onboard my system as I had no pain or symptoms to need them. I simply got in my chair in the morning?had a normal and customary strong legs spasm..the kind that will lift your butt up off the chair while legs are on foot plates?these can be rough and give chills, but this time..BAM?another quick headache onset?waves of throbbing pain. Grabbed the pills above. Took one of each as I was scared and confused and put the nitro paste on my chest?called 911.

This time the headache was less severe when they arrived and bp was only 114..still high for me.

They did abdominal and pelvic ct and abdominal xray. No constipation, no anything abnormal they could see. All labs were perfect. No infections.

They gave me Baclofen and Toradol on top of what I had already taken before arriving.

Even though I still had a slight headache?and leg spasms and increase in headache upon touch to mid section?they discharged me as they said they had no apparent cause and no emergent issues they could detect.

They discharged me with a rx for Toradol and valium, but told me not to take for more than 4 days due to possible kidney/ urine issue.

I am better now?but of course on meds and still having strong leg spasms?

I can?t live on Pain meds, muscle relaxers and valium to prevent AD . I need to be able to work and function and find out WHY the AD is suddenly occurring.

I feels like it is coming from my mid section and I have hyper sensitivity in that region. First time in the anal area and lower back, this time in general stomach and particularly when he squeezed my waist and lower rib cage. Not sure if this is all just rebound pain and sensitivity.

But there is nothing they can pinpoint.

I should have had my period by now, but haven?t and went into first episode very swollen as I have really been struggling with severe swelling in legs and body prior to this. I am not swollen today so that should not have played a role in this 2^nd episode.

I am not pregnant.

Please advise what steps I should take to figure this out. I am terrified I will have another episode, which seems highly probable at this time.

In the meantime, since I am alone most of the time, I have gotten life alert, printed out AD cards and keep medicine with me for any new episodes.


FYI for anyone reading not aware of AD:

Autonomic Dysreflexia
Autonomic dysreflexia (AD) is a potentially life threatening condition that can be considered a
medical emergency. It mainly affects people with injuries at T-6 or higher. Although rare, some
people with T-7 and T-8 injuries have developed autonomic dysreflexia.
AD requires quick and correct action. Serious AD can lead to a stroke. Because many health
professionals are not familiar with this condition it is important for people who are at risk for
AD, and the people close to them, to learn about it. It is important to know your normal blood
pressure numbers and check your blood pressure often. If you see a big increase in your blood
pressure this may be a sign of autonomic dyreflexia.
What to do
The first thing to do if AD is suspected is to sit up, or raise your head to 90 degrees. If you can
lower your legs, do so. Next, loosen or remove anything tight. Most importantly, locate and
remove the offending stimulus, if possible.

The signs of AD include:
? High blood pressure (higher than one?s normal pressure)
? Pounding headache, flushed face
? Sweating above level of spinal injury
? Nasal stuffiness, nausea
? Slow pulse, lower than 60 beats per minute
? Goose flesh below level of spinal injury

[Donno]

Wow, very scary! The only thing that I can think of is that the spasms are somehow triggering the AD, and your fear is sending your BP up and causing a positive feedback loop. Could this be the onset of menopause, and spasms in the legs triggering a spasm in your uterus? Might be the cause of the positive feedback.

When you can't tell what is wrong, it is difficult not to let fear take over and your imagination run wild...

[SCI-Nurse]

What areas did they scan in your abdomen? Did they include the pelvis as well? I am assuming they included your uterus and ovaries, as well as your gall bladder and all areas of the intestines? Was this done with or without contrast? Have you made an appointment with your PCP for further evaluation of possible causes?

(KLD)

[sherocksandsherolls]

What areas did they scan in your abdomen? Did they include the pelvis as well? I am assuming they included your uterus and ovaries, as well as your gall bladder and all areas of the intestines? Was this done with or without contrast? Have you made an appointment with your PCP for further evaluation of possible causes?

(KLD)

thank you kld and Donno for your reply. The did ct of pelvis as well but no contrast. I have requested appointments for follow up but wanted to know your opinion of meds/ tests needed.

Thank you Just took baclofin and toradol but wondering if this is best to hold off new attack ?

[Curt Leatherbee]

Wow, sounds scary. I don't think it was mentioned, but did you get a urine sample in for a UTI, that is probably the most common thing in us SCI that can case a/d due to bladder irritation. Depending on the bug, the pee is not always cloudy or smelly but can irritate the bladder bad enough to do what you describe at times. Other things that come to mind is a pressure sore, but I'm sure you must have been checked closely for that. Your blood pressure did not sound real high, but high enough. Your not going to get really messed up until it hits over 180 on the top #. It could also be the constipation causing the trouble, maybe take stool softener, the cranberry pills I take (Solaray D-Mannose with Cranactin) seem to serve a secondary of helping keeping me not constipated. I wonder if what your experiencing too could be the start of menopause and hot flashes? SCI Women can start menopause more early. Just some thoughts.

[sherocksandsherolls]

Thanks curt. They tested for uti. Like I Said I have been constipated before and worse so...and was but had no impaction and had gone that morning. I think the menopause may be possible. I hope that doesn't cause this! My Bp was very high for me and that was after first dose of nipro paste to lower it. My head was exploding the pain was so bad and sudden. I was so sick I even threw up three times but that could be from iv pain meds. I will take softeners and cranberry too

[tumbleweeds]

Thanks curt. They tested for uti. Like I Said I have been constipated before and worse so...and was but had no impaction and had gone that morning. I think the menopause may be possible. I hope that doesn't cause this! My Bp was very high for me and that was after first dose of nipro paste to lower it. My head was exploding the pain was so bad and sudden. I was so sick I even threw up three times but that could be from iv pain meds. I will take softeners and cranberry too

I wonder if you might have something going on inside your badder. Can you pee on your own or do you IC, or? I used to have a supra pubic and the balloon would irritate the wall of the bladder and cause AD. It also caused polyps which had to be cut out or they'd get wrapped up in the catheter and tear out. Maybe see a urologist and get scoped?
With bad bouts of AD I'd get blurry vision and throw up multiple times too.

[Sue Pendleton]

I would check in with your GYN. Not so much menopause but possibly a benign tumor that has grown enough to push on something and cause AD and/or spasms. It is also some of the faster tests for ruling things out.

[lynnifer]

Chronic constipation can cause trouble. I can't think of anything else other than menopause.

[sherocksandsherolls]

Menopause...if so...then I need to treat it?

the only other thing that i different is I am in a new wheelchair...maybe the change in seating positioning is bringing it on...was good yesterday, today woke up with goose pimples when I move in my legs. and sensitivity in back sides.....so took two motrin and trying to move gingerly...so not to cause another spike of AD.

[SCI-Nurse]

Just to clarify, you are not yet in menopause, correct? To be in menopause, you have to have not had a period for 24 months. You may be peri-menopausal if you are starting to have irregular or skipped periods, but your physician would need to confirm this. Many women have painful periods (cramping, etc.) during their peri-menopausal time, and may find that the few periods they do have are very heavy. What is your sensory level? The uterus is innervated at T10. You mentioned you were late for your period. Did it start yet?

(KLD)

[sherocksandsherolls]

Hi again KLD.

I am c 6-7 incomplete so I have hand function...no core.

I still have no period.

Motrin helped the goose pimples when i move, but till feel waist down strange sensations. Bp was down to 97 / 88

I did not do ct with contrast...do you think that should be done?

[SCI-Nurse]

I would want some more studies done to your pelvic area, including the uterus. For example, you could have a ovarian cyst, fibroids, low grade PID, or other cause of possible pelvic "pain". Have you seen a good GYN for a work-up of these issues??

(KLD)

[Sue Pendleton]

I was thinking ovarian cyst too. They can grow and you don't know until suddenly, if your AB, you might have big UTI symptoms. It's hit a few friends. All so far have been benign but one friend went from fine to needing to pee every 10 seconds and pain. Turned out hers was the size of a lemon. That could cause sudden nasty AD.

[sherocksandsherolls]

I would want some more studies done to your pelvic area, including the uterus. For example, you could have a ovarian cyst, fibroids, low grade PID, or other cause of possible pelvic "pain". Have you seen a good GYN for a work-up of these issues??

(KLD)

I have an appt on Tuesday with GYN..so I will bring these test/possible issues up..

Still no period. weird. still goose pimples when I move, especially in morning...taking Ibruprofin seems to help... gets better as day goes on...wondering if I am just not sore from new seating/chair.

How long does it take your body to adjust to new wheelchair break in..??