Autonomic Dysreflexia or Not?

[tskushi26]

I just posted a new blog. I could REALLY use from feedback, especially from the ladies, here on CC. I don't know many women, with high level SCIs & need to find a few, to pick their brains. If you fit that description, or know someone that might be able to share some insight, I'd really appreciate it! Thanks :)

http://lifeparalyzed.blogspot.com/2011/03/autonomic-dysreflexia-or-not-autonomic.html

[tskushi26]

still no replies? :(

[Emi2]

If it is period related - i.e cramp pain, does taking pain relievers help? you should not take b/c due to blood clot risk but could consider mirena iud - it has helped my friend who suffers from painful endometriosis by stopping her period.
what kind of sanitary supplies do you use? pads or tampons? maybe they hurt you?

[tskushi26]

The thing is, I don't feel anything directly related to my period, such as cramping, or the actual moisture/flow. I usually just wear Depends those days. It's easier than messing around with pads, especially since I can't even dress, or clean myself. If I am experiencing cramping, I don't know, but thought maybe it's triggering AD like symptoms. I definitely feel more flu like, during those days. No pill that I've tried for pain (Tylenol, Advil, aspirin, & Aleve), has helped, or lessened the symptoms (fevers, chills & cold sweats).
My main question is if my symptoms are AD related, since most of the time, there's no change in my blood pressure.

[Scaper1]

Would you consider an ablation? That may reduce some of the symptoms, at least it did for me when I ran into similar problems about 10 years post-injury.

[marycsm77]

The thing is, I don't feel anything directly related to my period, such as cramping, or the actual moisture/flow. I usually just wear Depends those days. It's easier than messing around with pads, especially since I can't even dress, or clean myself. If I am experiencing cramping, I don't know, but thought maybe it's triggering AD like symptoms. I definitely feel more flu like, during those days. No pill that I've tried for pain (Tylenol, Advil, aspirin, & Aleve), has helped, or lessened the symptoms (fevers, chills & cold sweats).
My main question is if my symptoms are AD related, since most of the time, there's no change in my blood pressure.

tskushi,

while i do not have an answer for you about the AD, as I dont have it. I have myelopathy from spondylosis. I am not in a chair, i have difficulty walking and other neuro deficits. But what I wanted to tell you is regarding the flu type symptoms you experience during your menstrual cycle. I have ALWAYS had these same symptoms you describe and still do (although to a lesser degree). Everytime I get my period, i am very weak, exhausted, feel as though I am "coming down" with something, sometimes run a low grade fewer. There were many times I had to call out sick from work, I just could not function. People would look at me and think i was going to pass out. Nothing I take helps either. I am not anemic, although my ferritin (think of it as stored iron) was at one time extremely low, it was 2. During my period i try and take as good care of myself as I can, plenty of supplements, hydration, rest, etc. It always had to just run it's course, which was about 2-3 days of feeling really crappy.

I hope you find a way to manage it, if you dont find some concrete answers.

mary

[tskushi26]

Scaper- I'm not sure what you mean by that. Could you elaborate?
Mary- I am anemic. My Dr. just came by today & wants to start me on iron supplements. Of course, he warns it could have the negative result, of constipating me, so now we're going to have to play around with my BP meds (again) and see if it helps. He admits, it doesn't account for everything, but it's something. Thanks for your insight.

[tskushi26]

Scaper- I googled ablation & don't think it'd be appropriate in my case. Although I don't feel it, I know from what my caregivers & nurses tell me, that my flow is pretty light. It seems ablation is more for women that experience heavy bleeding, which I don't. Thanks for the tip though.

[marycsm77]

Scaper- I'm not sure what you mean by that. Could you elaborate?
Mary- I am anemic. My Dr. just came by today & wants to start me on iron supplements. Of course, he warns it could have the negative result, of constipating me, so now we're going to have to play around with my BP meds (again) and see if it helps. He admits, it doesn't account for everything, but it's something. Thanks for your insight.

tskushi,

Just to let you know, I was taking ferrous gluconate which although I believe has less elemental iron then sulfate and fumarate, it also produces less gastrointestinal side effects. So with constipation and BP being a concern, you may want to discuss this with your md. I never had a problem with the gluconate, ever. Never had any constipation or GI upset of any kind. This was recommended to me by my physician at the time with dosage etc. Maybe discuss which type of supplementation may work best for you.

Just as a side note, I have never had a heavy period either, and yet still had all of the symptoms that I mentioned, similar to yourself.

Oral supplementation is not going to be a fast solution and is going to take some time.

Also, if you ingest some Vitamin C with your supplement, it is said to help absorption. Also look up foods to avoid taking with your supplement, ie milk, caffeine, etc.

[Scaper1]

Scaper- I googled ablation & don't think it'd be appropriate in my case. Although I don't feel it, I know from what my caregivers & nurses tell me, that my flow is pretty light. It seems ablation is more for women that experience heavy bleeding, which I don't. Thanks for the tip though.

The no-more bleeding is the main benefit, but some (most?) women also experience a reduction in the other pre & post menses symptoms. I did, anyway, especially the gross cold sweats that never quite became full-blown AD. I would hazard a guess that it may also ease your iron deficiency. Anyway, it's a half hour out-patient procedure with very few downsides and may be worth trying given your suffering.

[RoboPixie]

The thing is, I don't feel anything directly related to my period, such as cramping, or the actual moisture/flow. I usually just wear Depends those days. It's easier than messing around with pads, especially since I can't even dress, or clean myself. If I am experiencing cramping, I don't know, but thought maybe it's triggering AD like symptoms. I definitely feel more flu like, during those days. No pill that I've tried for pain (Tylenol, Advil, aspirin, & Aleve), has helped, or lessened the symptoms (fevers, chills & cold sweats).
My main question is if my symptoms are AD related, since most of the time, there's no change in my blood pressure.

Hey Tskushi, I tried to reply on your blog but it wouldn't let me. Your symptoms may very well be AD. I get a lot of really weird AD symptoms before, during, and even after my period. All without my blood pressure changing. My legs spasms get worse, I wake up with migraines, I'll get dizzy at times and I generally just feel like crap (flu like symptoms). I think the leg spasms are because I'm having cramps but can't actually feel them. Try taking midol or something similar and eating dark chocolate if you can. Those help me a bit. It doesn't get rid of all the symptoms but it does make them tolerable. Also, I don't recommend taking any kind of birth control that limits the number of periods you have due to high risk of blood clots.

[tskushi26]

Thank you both! I'll mention these ideas to my doctor & see what he thinks :)

[tskushi26]

Thanks pixe. Yeah, I'm extremely hesitant to try birth control. That's a great point, about the blood clots. I never even thought of that! I was just worried about the weight gain >_>

[MillsWheels]

I have dysautonomia aka autonomic dysfunction and POTS (postural orthostatic tachycardia syndrome - ie my HR on my Tilt table test went from 80-150 immediately and stayed that way throughout the entire test. I can easily have hr's of 170 from standing and walking a short distance...hence my wheelchair. I need it for many other reasons too but thats another story. POTS patients usually have orthostatic hypotension too)

AD is very similar, but is generally considered to be quite dangerous, whereas POTS is not life threatening, just can cause you to be in bad situations (pass out suddenly and hit your head..be unable to sit up at all for days weeks months or even years at a time...)

Yes to have any type of dysautonomia (autonomic dysreflexia, POTS, neurocardiogenic syncope, orthostatic intolerance, just to name a few) you have to have dysregulation of your autonomic nervous system. your ANS controls you blood pressure, HR, temperature, fight or flight response etc...

you said in your blog you don't have BP problems but on here you mentioned you're on BP medications, so that confused me a little bit.

Keep a close eye on your vitals and don't dismiss your symptoms - hang in there!

[Liz321]

Thanks pixe. Yeah, I'm extremely hesitant to try birth control. That's a great point, about the blood clots. I never even thought of that! I was just worried about the weight gain >_>

BC pills caused my clot.

[swh2007]

Consider hypo glycemia also. It can cause things that seem like AD. It is also dangerous.