7 replies to this topic

[bethluv]

Hello I’m new to the message board but not new to SCI. I’ve been paralyzed since 2000 from a motor vehicle accident. I am a c7 complete quadriplegic. I am now 29 years old and just had a baby boy 2 months ago. I have a serious problem that I feel is a life or death situation and I hope there is someone out there that can give me some insight. I have never had autonomic dysreflexia since my spinal cord injury until 2weeks ago. It all started after having sex with my boyfriend and then the next day during digital stimulation from my bowel program, and even transferring to the couch to watch a movie and now rolling on my side to get dressed in bed. I went to the ER when my blood pressure was 156/104; the headache was excruciating… the worse pain I ever felt in my life. I stayed in the hospital for 3 days and had the following tests done: MRI, EKG, urine culture, blood tests, pelvic examines, renal ultrasound, and an abdominal x-ray (for stool impaction). Finally they released me because they couldn’t find anything wrong. So now I have headaches all day long and get the pounding headaches and raised blood pressure from what I explained earlier. My doctor prescribed me Nitro paste, I used it during my bowel program and my blood pressure was 183/126. However, yesterday I fainted because bp was too low (this was without using the nitro paste). Good thing I wasn’t holding my infant at the time. I went down the list of causes for autonomic dysreflexia and haven’t found my cause yet. I can’t imagine living the rest of my life like this. I just don’t feel right and I’m afraid of having a stroke or heart problems due to the dysreflexia as it just won’t let up. Therefore, I have a few questions such as: What else should I look for? Has anyone else had this problem? If so what was the cause? What should I do?

[nomis]

hi bethluv

This is a real bummer for you. The obvious recent change in your life is having a baby and no doubt you've taken that into your deliberations. So much about AD is unknown so I'm hoping it's to do with readjusting after giving birth and that it'll soon settle down and you can get on with the important job of mothering your baby. Let's see what experiences others here have.

[Murray]

Never gave birth... but had a nasty crash in my w/c a while back, broke my right hip. Didn't know it, of course, until that night - leg swelled up like a stuck pig and I had my first - hopefully last - AD attack. Geesch! It was like postponed shock - had violent upper body shakes, crazy chills and fevers. Nasty. BP couldn't make up its mind what to do - high one minute; low the next. Lasted 1 to 2 hours, then left me alone. Haven't had any trouble since. The hip's comin' along fine. No pins or plates - just lettin' it fix itself. Have to be a little cautious with transfers, etc. Good luck to you -Lynn

[noles1984]

I've had quite a few in 34 years but nothing serious. Had a bowl blockage create a bladder situation where it wouldn't empty. Worst headache in my life. Had to convince my attendant it was bowel related. I've had much milder attacks with blocked catheters. I had an infection where my bp was 60/46 this year. I don't know what causes yours after 8 years. That seems unusual. I'll do more thinking. Could be a few things. The bp going up really high and going really low is somewhat common in newer quads.

Edited by noles1984, 22 December 2008 - 03:59 PM.

[Scribbler]

bethluv, on Nov 25 2008, 04:59 PM, said:

Hello I’m new to the message board but not new to SCI. I’ve been paralyzed since 2000 from a motor vehicle accident. I am a c7 complete quadriplegic. I am now 29 years old and just had a baby boy 2 months ago. I have a serious problem that I feel is a life or death situation and I hope there is someone out there that can give me some insight. I have never had autonomic dysreflexia since my spinal cord injury until 2weeks ago. It all started after having sex with my boyfriend and then the next day during digital stimulation from my bowel program, and even transferring to the couch to watch a movie and now rolling on my side to get dressed in bed. I went to the ER when my blood pressure was 156/104; the headache was excruciating… the worse pain I ever felt in my life. I stayed in the hospital for 3 days and had the following tests done: MRI, EKG, urine culture, blood tests, pelvic examines, renal ultrasound, and an abdominal x-ray (for stool impaction). Finally they released me because they couldn’t find anything wrong. So now I have headaches all day long and get the pounding headaches and raised blood pressure from what I explained earlier. My doctor prescribed me Nitro paste, I used it during my bowel program and my blood pressure was 183/126. However, yesterday I fainted because bp was too low (this was without using the nitro paste). Good thing I wasn’t holding my infant at the time. I went down the list of causes for autonomic dysreflexia and haven’t found my cause yet. I can’t imagine living the rest of my life like this. I just don’t feel right and I’m afraid of having a stroke or heart problems due to the dysreflexia as it just won’t let up. Therefore, I have a few questions such as: What else should I look for? Has anyone else had this problem? If so what was the cause? What should I do?

Hi bethluv,

I had a period of AD so I know how excruciating the headaches can be. I've no idea what caused my bouts of AD but they just disappeared. Maybe its to do with your recent childbirth, your hormones will probably be all over the place. I hope things improve for you soon and that you can enjoy Christmas.

Good luck

[Texas Angel Ang]

I had a friend that went through the same thing that you are describing after giving birth. When she would get up she was constantly having to tilt back because of the dysreflexia.

In fact they did a documentary on her "paralyzed and pregnant" she was an online friend, I haven't spoken to her in a while, but her body eventually readjusted -- it took a while though.

I have never given birth, but I do get a severe case of dysreflexia before/during my menstrual cycle! So more than likely it's your hormones readjusting and your body is reacting... maybe the other women can help you out that have actually given birth though.

Congratulations by the way! I hope you get to start enjoying motherhood without the dysreflexia very very soon!

[araitn]

Texas Angel Ang, on Dec 22 2008, 02:53 PM, said:

I had a friend that went through the same thing that you are describing after giving birth. When she would get up she was constantly having to tilt back because of the dysreflexia.

In fact they did a documentary on her "paralyzed and pregnant" she was an online friend, I haven't spoken to her in a while, but her body eventually readjusted -- it took a while though.

This is odd...... I just finished watching that documentary right before I got on here. I've had it recorded for a week or two and just now got around to watching it.

Yeah, that lady had a rough time before the delivery and after. She couldn't sit up straight without passing out. So she had to stay in bed (or reclined in her chair) for eight months leading up to the birth of her son. The show actually ended with her still having problems with AD, so it's good to know she is better.

I'll have to say she has a great husband. I felt sorry for him because he had to do everything for the newborn and take care of her while she was readjusting.

Bethluv: I hope things get better for you soon!

[Texas Angel Ang]

Yeah, they still play it A LOT, I'll e-mail her right now actually and find out how she's doing. She used to send a lot of pictures and updates of family. It's been a while since I've heard from her -- hopefully everything is okay.

I wouldn't feel sorry for him -- he loves her a lot -- "for better or for worse"

araitn, on Dec 22 2008, 02:56 PM, said:

Texas Angel Ang, on Dec 22 2008, 02:53 PM, said:

I had a friend that went through the same thing that you are describing after giving birth. When she would get up she was constantly having to tilt back because of the dysreflexia.

In fact they did a documentary on her "paralyzed and pregnant" she was an online friend, I haven't spoken to her in a while, but her body eventually readjusted -- it took a while though.

This is odd...... I just finished watching that documentary right before I got on here. I've had it recorded for a week or two and just now got around to watching it.

Yeah, that lady had a rough time before the delivery and after. She couldn't sit up straight without passing out. So she had to stay in bed (or reclined in her chair) for eight months leading up to the birth of her son. The show actually ended with her still having problems with AD, so it's good to know she is better.

I'll have to say she has a great husband. I felt sorry for him because he had to do everything for the newborn and take care of her while she was readjusting.

Bethluv: I hope things get better for you soon!