sue1234

A great doctor is hard to find. Congratulations for one that takes you seriously!

http://hyper.ahajournals.org/content/66/Suppl_1/AP064.short

FINALLY!! I have had POTS for 10 years, and the only thing they have tested for as a specific cause was the Mayo Panel of Autoantibodies. They were all negative. So, I've just followed the research as it came out to see what has been newly found. Well, this is what research I found 2 months ago, and then made an appt. with a local doctor that had written a study about it in Pubmed. Median Arcuate Ligament Syndrome, or MALS I had read where some of Dr. Abdallah's patients (Virginia) were testing positive for it, and then had surgery to fix it. Some of them found their POTS went away or lessened significantly, and their stomach issues were fixed. I also saw that Dr. Suleman in Dallas was testing his patients now for it, and finding some of his patients were positive, too. So, I had the extensive ultrasound for it today, and apparently it was positive. I don't know the specifics of it, but will request a copy of the report tomorrow. The doctor (a cardiologist) told me he wants to schedule me for a CT scan of the abdominal arteries (MRA?) to get it confirmed by a radiologist. He said he right away wouldn't recommend surgery for me because I don't have the main symptoms, stomach pain and vomiting. But, from what I've read around on it, around 20% don't have those symptoms. I have the awful gastroparesis and bloating that can be associated with it, along with some other out-lying symptoms. So, this could be my answer! Well, maybe or maybe not. But this is the first time I've had a "positive" on something that could contribute to POTS symptoms. I just found this January article by Dr. Suleman on the subject: http://hyper.ahajournals.org/content/66/Suppl_1/AP064.short

Your fingers curling up into your hands sound like a carpopedal spasm to me. Usually that is from low calcium. Maybe try upping your calcium to see if that helps that symptom?? I can't imagine why they are not concerned with your blood pressure! Do you have another doctor you can ask? I HATE steroids, and most likely would have all those symptoms, too! I haven't taken them in about 15 years because of the adverse reactions I get. I hope it goes away quickly for you!

Happy New Year! Let 2016 be THE year that we hear something helpful from research!!

Bumping up as I've had a change in my cortisol/ACTH pattern. I will explain in another post.

Merry Christmas! And hope whatever it is doesn't last too long!

And yet I am short and about 15 lbs. overweight. I feel I have NO room in my abdomen for all my organs and intestines! Maybe being short is causing a similar problem (if I even have this).

Lewis, I forgot to come back and say thank you for your story! I cannot wait for my upcoming appt. to check for this.

Mold is prevalent in a lot of homes across the globe. I don't know if I see the POTS-like effects in a great number of people. And, thinking about the genetic tendency to react to mold, I think you would see family clusters coming down with it because of the shared genetics. I wonder how many of us here have at least another family member that has POTS(and not due to EDS or other known genetic/metabolic reason) (I am the only one in my family) Ks42, I think your group IS an anomoly, and most likely pointing to something environmental, such as pesticides, etc.

Thanks, Katy.

Same here, what you both describe. BTW, fish bowl sounds like a perfect description!

The first time my magnesium level was tested was about 8-10 years ago. It at the absolute top of the normal range. Every test since (every few years) still has it at the absolute top of the range. Today it was tested again, and it was actually over the top at 2.6 (1.8-2.4). I admit I do take Milk of Magnesia these last few years, but that doesn't explain the 6-8 years prior that were highish also.

I feel like I have too much of something in my head. I just had a TTT that also measured cerebral blood flow. My flow reduced by 4% during the tilt, but I don't know if that is significant or not. But, very often, I feel like my head is just "full". I have low aldosterone, which makes me lose fluid, and I've always wondered if possibly too much fluid in the head makes my brain sensor think that I have too much fluid pressure, so it is trying to get rid of fluid. Of course, I think too much!

I have NO idea if it is bone pain or pooling causing the issues. I cannot wear high compression, as it makes my chest feel "full". I tried just putting the compression stockings on my feet the other day, and that worked for a few hours until the compression hurt my feet and had to remove them.

Science Girl, I still have that problem after around that 2-hour stand up time. Since that post, I have continued to build my vitamin D up into the normal range, but I seem to still have the pain. Maybe I still need to get it up higher. I'm glad your pain went away!

Great!

I am on my 4th neurologist. The first 3 did labwork that was relevant, like autoantibodies, heavy metals, and other weird things. All were normal or negative. But, after labs, they did absolutely nothing else. I don't think they knew what else to do. This 4th one is part of a dysautonomia clinic, so should be able to address the POTS more. I am still in the diagnostic phase, so don't have recommendations yet on what to do.

I have been feeling "off" for the last 3 months. It started with fatigue more than normal for me, then in October I felt like I was sick. I felt achy and that malaise you get when sick, but I never had a fever. It lasted 2 weeks, and I got over that. But since then, I have been feeling weird, with a full head feeling and, as some one else mentioned, a detached feeling. I've had about 3 appointments during all this to see if someone could help me, but not one doctor could figure it out. I get moments where I can think straight, like now, so wanted to let you know it ***** to be sick and no doctor can figure it out. I am 10 years into POTS and these last 3 months have been the worst and have left me unable to do hardly anything. I don't even want to do Thanksgiving by just visiting with my grown kids. That sounds awful, but my brain is not into conversation right now. I hope this antibiotic helps!

Thanks, Corina. I'm not liking this at all!

Just checked back, Lewis, and see you just posted! Can you give us a little story of what symptoms it cleared up, and maybe what led up to the diagnosis? Thanks in advance.

I have always had trouble with heat, but colder weather was fine if I didn't have to stay outside in it too long. Well, this winter when it drops to the 40s outside, and my house is under 73F while I'm up for the day, my fingers are turning white(raynauds, I guess) and my head feels funny. I am much slower in my thinking process. Even with my heater turned up, it takes hours for me to get to my normal. This is scary!! Anyone else? And why do we have this?

Why are we not talking about this? CLICK on the tab that says "watch here" and it will go to the video This is a video where Dr. Abdallah in Virginia is talking about impingement of the celiac artery/celiac plexus by the median arcuate ligament in some of his POTS patients. They are having surgery, and some of them (according to a post on another forum) are now free of POTS. The main symptoms are nausea, pain and vomiting after eating, but that's not all, or someone could have just gastroparesis or shortness of breath when exercising. Read the "vegetative" symptoms on page 16 here (it's a download, so may have to open it) https://l.facebook.com/l.php?u=http%3A%2F%2Fu.jimdo.com%2Fwww400%2Fo%2Fs83452f7d9097b8db%2Fdownload%2Fm1684de4f7f67e0bb%2F1413965147%2FThe%2BCeliac%2Bganglion%2B%2528artery%2529%2Bcompression.pdf&h=AAQFz-Nod I made an appt. with a cardiologist that has some experience with MALS, and I'm going to find this lecture on a printout somewhere. I haven't found it yet. Could it be something this simple? And I'm NOT saying this is THE answer to POTS, but maybe it is for some.

Rich, I'm not at home right now to look at the report. But, I had pads attached to my chest, upper shoulder/back, each temple, lower stomach and on one calf. I had a blood pressure cuff on my arm, and I had a finger-type cuff on two fingers. I had NO blood drawn. Somehow he gets all this from the graphs coming from the leads. I did have my blood pressure go up, at one time but not sustained, to around 184/140. I think that's how he judged that I have a lot of adrenaline kicking in. I had a baseline while lying down for about 10 minutes. Then I was upright for 30 minutes. Then, lying down again for 10 minutes. I had this done at the Dysautonomia Clinic associated with UT (University of Texas) in Houston. I had found that they had a Dys. Clinic last spring, and wanted to get in it so I could be an established patient. That way, as any new research comes out with possible treatments, I have access to physicians that most likely are aware of the new treatment. Hopefully, anyway! Besides my normal feelings I get when standing through a TTT, I had a "hollow" feeling in my chest that made me a little air hungry. During the test, I mentioned that, and said it feels like I don't have enough resistance in my chest when breathing. He said he could understand, and later said I apparently don't have enough volume in my chest when upright. I think upping the blood volume will maybe prevent the adrenaline from kicking in. I think. He didn't say so, but I think if there is adequate volume circulating, then there is no "emergency" for my adrenaline to shoot out to fix.

I had my TTT 2 days ago. First off, I had to fast (food and water) for 4 hours in advance for my late-morning test. I found out not getting my fluid in in the morning made me feel worse by the time I had to walk in just to go to the test! I need to fluid load in the mornings! I found out that my Stroke Volume decreased to 41 cc, which was only 35% of my baseline. If anyone can explain what that may suggest, please feel free. I don't understand stroke volume enough to know if that is a normal reading for a POTS patient or what. He said that I lose a lot of my fluid from the chest area. The doctor said I have a lot of adrenaline. I knew that! I am a ball of adrenaline, but without the energy from it!! Basically, my heart rate and blood pressure rise the longer I stand, which I knew. My feet and hands turn purple/red, and they itch like crazy. When upright, my cerebral perfusion went down 4 points, and my leg perfusion went down like 73 points! I'm not sure if the 4 points is significant or what, as I don't know of where to find any research to compare it to. So if anyone has anything on that, I would appreciate any info. Basically, I am supposed to start Propranolol and Florinef. I have not wanted to try Florinef in the past, because occasionally I get super bloated in the upper abdomen, and I'm afraid retaining fluid could exacerbate that. I guess I'll just have to try it anyway and see what happens. I was diagnosed with "moderate autonomic dysfunction". This report was going to my neurologist, who is supposed to oversee my treatment.