[loretta]

Does anyone have suggestions for syncope or pre syncope. It happened again this morning-it happens so fast I bearly got to sit down. I took my blood pressure and it was 86/51 pulse 61 I didn't pass out this time-- start sweating, lose hearing, get nauseous I've had as low as 60/40. Four hours later it was 127/70 pulse 71
normal for me. I have totally passed out-paramedics couldn't find pulse or heart rate- was in icu 4 days. This was in 05. It happens at home, at friends house, in the mall, in restaurant --never know when. I went a long time with it not happening, but last few months have had several spells. My doc says vasovagal syncope.I did go off lorazepam and vicodin. a year a go. I also can go the 'other' direction with blood pressure and heart rate- 185/110 pulse 112 I'm on blood pressure med and heart rate med and usually it stays good. It is the surprises in both direction that is hard to deal with.
I did have a heart attack a year ago. I'm 64-rsd since 96-now generalized and full body.
I understand the rsd autonomic part-just wondering if anyone this happens to has any suggestions???
Thanks ahead for any responses. Take care, loretta

[Angelina55]

Originally Posted by loretta

Does anyone have suggestions for syncope or pre syncope. It happened again this morning-it happens so fast I bearly got to sit down. I took my blood pressure and it was 86/51 pulse 61 I didn't pass out this time-- start sweating, lose hearing, get nauseous I've had as low as 60/40. Four hours later it was 127/70 pulse 71
normal for me. I have totally passed out-paramedics couldn't find pulse or heart rate- was in icu 4 days. This was in 05. It happens at home, at friends house, in the mall, in restaurant --never know when. I went a long time with it not happening, but last few months have had several spells. My doc says vasovagal syncope.I did go off lorazepam and vicodin. a year a go. I also can go the 'other' direction with blood pressure and heart rate- 185/110 pulse 112 I'm on blood pressure med and heart rate med and usually it stays good. It is the surprises in both direction that is hard to deal with.
I did have a heart attack a year ago. I'm 64-rsd since 96-now generalized and full body.
I understand the rsd autonomic part-just wondering if anyone this happens to has any suggestions???
Thanks ahead for any responses. Take care, loretta

I am so sorry you are going through this. I wish I had some advice for you! But all I can offer is that you are in my thoughts and prayers! I hope you are feeling better and that you get some good advice soon!
Angelina

[loretta]

Hi Angelina,
Thanks for your thoughts. I just thought I would put that post out there. We always learn from each other right!!
I really don't think there is anything to be done. I always get to a sofa-bed and put legs up. (read that) Even did that at a restaurant (embarrassing) and at the mall-or at stores. Always have to find a place right away or pass out. Sometimes, it doesn't matter-pass out anyway. It happens so fast.
How are you doing? Hope you have found a 'Dr. to be charge' that is knowledgable and you like.
Take care, loretta with soft hugs back

[catra121]

Well...I had issues with passing out and frequently have dizziness and light headedness that will come on me very suddenly and I need to sit or grab onto something to steady myself. When I was stuck in a wheelchair and couldn't stand or walk (when my RSD spread in 2011) that was when it all started. Even when I was getting "better" and able to walk with physical therapy I still felt trapped because I did not feel safe to drive. These episodes were happening ALL the time and would last anywhere from a few seconds to an hour or so. In fact...my first episode of passing out came shortly after I got RSD and prior to the diagnosis...but we all just blamed it on a sudden spike of pain (which I still think it was).

At any rate...this was a huge problem for me and one of my primary focuses for my treatment...even more so than the pain because it was keeping me from living a "normal" life even once I started to get more of the function back. We tried a lot of different meds and nothing really worked. Then I went on clonidine patches and now my episodes are few and far between (and usually related to spikes in pain or me doing too much).

This was something I read about on the RSD Puzzles and for me it worked and was the solution to my problems. Apparently the "spells" were caused by sudden changes in my blood pressure and the clonidine regulates the blood pressure so that doesn't happen. Because...you know...blood pressure is something controlled by the sympathetic nervous system which goes all wonky when you get RSD. I like the patches because they are easy and I just put on one for a week and change it out every Sunday (rotating locations because if you keep putting the patch on the same spot it will irritate the skin).

Not sure if this will help you or not but it did help me. I actually printed out the RSD Puzzle and brought it in for my doctor to review. We had already tried a bunch of things and tried one more before we moved onto the clonidine patch...nothing to lose at that point and it kept me hopeful through the trial and error process that there was another option to try. We also ruled out other potential caused for these issues because neither me or my doctor like to instantly blame the RSD for everything goes wrong with me and potentially let something else go undiagnosed or untreated.

Take care and good luck.

[mrsD]

Loretta, I have to ask what blood pressure drug you take.

The reason is that I had a severe reaction recently to a long time medication for me... lisinopril.

I was having a severe reaction to it and didn't realize it. One of the symptoms was this "going to pass out" feeling...and a strange rush of lightheadedness when I sat down after walking around.

This was due to excess bradykinin levels, which dilate blood vessels, when they dump into the blood. All ACE inhibitors have this potential... and it doesn't matter if you appear adjusted on them over time. So are you on an ACE inhibitor? People vary in how efficiently they can remove the bradykinin from the body.
Those with slow metabolizing systems, can have the bradykinin build up and a "spell" can occur.

I also developed a drug induced lupus, which affected my joints.
Never underestimate therefore drugs that seem common, like heart medications and blood pressure drugs. Many of them can cause drug induced lupus. The lupus is an inflammatory reaction to certain drugs.

http://www.lupus.org/webmodules/weba...=377&zoneid=17

[Angelina55]

Originally Posted by loretta

Hi Angelina,
Thanks for your thoughts. I just thought I would put that post out there. We always learn from each other right!!
I really don't think there is anything to be done. I always get to a sofa-bed and put legs up. (read that) Even did that at a restaurant (embarrassing) and at the mall-or at stores. Always have to find a place right away or pass out. Sometimes, it doesn't matter-pass out anyway. It happens so fast.
How are you doing? Hope you have found a 'Dr. to be charge' that is knowledgable and you like.
Take care, loretta with soft hugs back

We do learn from eachother. I have been so busy I haven't been able to call my neurologist that I see for migraines yet. But I do think you are right about getting a blood pressure monitor. I will feel umm weird, i just know my blood presure is droping. I can really feel my heart beat and it seems not right. and I will get light headed. And only want to sleep or lay down. It is such a weird feeling. My blood pressure has been low lately and really low for me. I am usually very high.
I hope you find your answers and don't give up hope just yet. And don't worry about what other people think! You just do what you have to do!
Angelina

[ali12]

[Do you know if you are hypermobile
I didnt know for many years after getting CRPS
When I started fainting it could happen up to 25 times a day and I was having convulsions. I had to wait until I was 16 to see a cardiologist as my PM didnt think it was linked
The cardiologist diagnosed me with POTS and said its quite common in people with Hypermobility or Ehlers Danlos
Testing has confirmed it all and its all linked into autonomic dysfunction
Knowing what the problem was and most days I can stop the faints with a few simple compression exercises or sitting, pacing and watchin how I stand.... basically POTS means your heart rate and blood pressure has a problem catching up with you when you change posture
Hope this helps and maybe mention it to your MD
Alison xx

[BraveGirl]

My daughter also has problems with syncope (she has CRPS as well). Her doctors describes it as a problem with not enough blood getting to her brain, so she gets dizzy and sometimes passes out. The main strategy has been to increase her blood volume, using the following measures:
1. 4000 mg salt per day, using Thermotabs (but some docs say to not use salt tablets and increase dietary salt)
2. Fludrocortisone
3. 1 liter of water/day

Obviously, you would need to do #s 1 & 2 under the care of a doctor, but #3 you can try on your own.

The other thing that was recently added that has helped a ton is compression stockings: http://www.brightlifedirect.com/jobs...-15-20mmhg.asp

They keep the blood from pooling in her legs, so there is more available to get to the brain. Some insurance plans will cover them.

All of these measures were put in place after my daughter was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), which was diagnosed primarily w/ a tilt table test, however, I think the same measures are used for a variety of similar autonomic dysfunctions. Good luck!

Lori

Originally Posted by Angelina55

We do learn from eachother. I have been so busy I haven't been able to call my neurologist that I see for migraines yet. But I do think you are right about getting a blood pressure monitor. I will feel umm weird, i just know my blood presure is droping. I can really feel my heart beat and it seems not right. and I will get light headed. And only want to sleep or lay down. It is such a weird feeling. My blood pressure has been low lately and really low for me. I am usually very high.
I hope you find your answers and don't give up hope just yet. And don't worry about what other people think! You just do what you have to do!
Angelina

[rafiki123]

I also was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) in 2009 after spending weeks flat on my back, not able to stand up without my bp dropping extremely low (unreadable on home machine) and heart rate raising over 30+ points just standing. It came on after a bad ear/sinus infection. Dr. said I had probably had it since childhood (have always been prone to faint) but the illness kicked it into overdrive. I was put on Midodrine and it was a wonder drug for me. I was able to go off the med after about 6 months and am ok. Still prone to faint with pain and have to wear HR monitor when exercising, but almost normal.

This episode occurred about 5 years after my RSD went into remission and I always wondered if there was any kind of connection.

Hope you can get your fainting spells figured out. As others have said, drink lots of liquid, increase salt, ( I drank low cal drinks with high sodium in them), and compression hose might help. They usually use a tilt table test to confirm diagnosis.

Deb

[SheilaW]

Along with salt tabs, fludrocortisone, increased water intake and compression hose, my doctor gave me this simple tip: Always lie down or sit with your legs raised.

Also: I'm not positive but I don't think chronic low blood pressure is a cause of POTS. The problem is a sudden drop in bp so the blood pools in your feet, not something blood pressure med would help.