nomdeguerre

Well, interesting development. I sometimes think I may be a bit too persuasive with my doctors in advising them about what is going on with me. Since I had read about others having this "coat hanger" pain AND my next door neighbor, a physician with PAF who also has it this type of pain, I was convinced it was because of the dysautonomia. An infection never occurred to me...or my doctors. I ended up in the ER because of severe pain in my mid back. An MRI and blood tests revealed an osteo myelitis in my C5-6 that had eaten away the disc and a significant amount of bone on each vertebrae. No wonder I had so much pain. So, I've been in a cervical brace for 2 1/2 months. 2 more weeks to go before I see my neuro surgeon for X rays and a decision about what to do next. The pain, however, is now down to a very manageable level. Whew!

I’ve had PIC lines, a port, and now a tunneled catheter. The PIC lines were fine, but had to be replace annually. The port I thought was going to be the answer. But because I needed to access it daily, the huber needle had to stay in place. Evan though it was changed weekly, the dressing created abit of pressure on the needle insertion point. That led to a small necrosis which necessitated the removal of the port. The tunnelled catheter was inserted 3 years ago and I have had absolutely no issues with it whatsoever. just my experience. Personally, I would never, by choice, go back to a port.

It’s been a long while since I posted, but I have also had worsening autonomic dysfunction during the last month or so. I had been plodding along on a plateau more or less successfully managing symptoms, but then I had a debilitating left temporal headache. I’ve had a daily headache for 9 years, but it has been “manageable” with botox. GI and GU symptoms are jumping in now as well. last week I got my first severe “coat hanger” pain up my neck, across the shoulders, into the rhomboid. I was bed ridden for days. Nausea and vomitting. This sounds like what you’re describing. what is helping? My doc gave me a supplemental set of botox injections into my traps, rhomboid, and occipital. Also gave me 3 days of steroids. I just starting to feel my pain level subside. Ondansetron helped my nausea. The sudden worsening of the rest of my autonomic symptoms concerns me. I haven’t done a lot of reading about recent research since I thought I was sort of stable. I’m thinking a conversation with your neurologist may be helpful. When new symptoms appear, or familiar ones suddenly and inexplicably get worse, this is new unchartered territory. We’ve battled and managed these issues a long time and know when something has gone out of whack. i felt blessed today to have a doc who knows me well enough to absolutely believe me and work with me to give me some relief. i wish the same for you with all my heart.

Sorry for the delay. I haven't been on-line since I posted. I'm not sure the articles would still be relevant since they would be over 8 years old at this point. I was diagnosed in 2011. There was less known then, and doctors weren't arguing as much about the efficacy of IV saline. Now they are worried about the risk of infection and clots, etc. Since IV saline it has been so effective for me and kept me relatively stable for years, there's little incentive to mess with a successful regimen. Also, I was an OR nurse for many years, so it was easier to convince them I knew how to maintain sterile technique. During my very infrequent travels, the home health agency writes a letter so I can take the IV bags and syringes with me and administer them at my destination as needed.

I've been on IV saline for about 7 years. I currently have a tunneled central line that has been in place over two years. I run 1 or occasionally 2 liters of saline a day and this has kept me stable for these 7 yrs. without one episode of syncope. I do take droxidopa which successfully maintains my bp better and more evenly than midodrine did. Being a former OR nurse also helped me be able to do some of the research and talk the talk with my physician. If he hadn't been willing to be a partner in my care, he wouldn't have stayed my doc. We both had suggestions and ideas and had to listen to each other. When we were discussing, I brought only one or two of the best, most current, well researched scientific articles I had found on Google Scholar. I highlighted who had done the studies, when, results, and maybe two or three relevant sentences. We did a trial to see if IV saline would help before we made the decision to place a PIC line.

You've had good suggestions for heart rate. My main problem was getting an accurate bp when standing. I have not found an automatic bp monitor that doesn't give an error message when my bp gets low enough to cause presyncope. (30-60 mm systolic.) I had to purchase a stethoscope and a manual bp cuff to be able to get a more accurate reading. When I was trying to get diagnosed, I kept a chart with my bp and pulse lying, sitting, and standing for 3min, 5 min, and 10 min. (This was early in the process when I was still able to stand for 10 min.) I kept this for about 2 weeks and brought the data with me to my doc. He, like most doctors I know, likes to have data and felt I was a reliable source. Good luck in getting your diagnosis. It can be a real battle. I got a lot of information from reading various posts on this website. It was enormously helpful.