Katybug

I'm sharing this because MS is a differential dx for dysautonomia and/or an underlying cause in some cases. http://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(16)30169-6.pdf

My BP runs low after surgery. Also, pain meds may also lower your bp if you are taking them post-surgery. I am living on a low dose of hydrocortisone and prednisone as I can barely function without it. One thing that happens without it is my bp tanks. So, I haven't been prescribed just for surgery but for the long term. I have an endocrinologist that actually works with several of my POTS neuro's patients. He says sluggish adrenal function is common in the POTS patients he sees. Hope things continue to improve. Katie

Welcome aboard!

I can't really comment on the rest but here's the most comprehensive MCAS paper I've ever found. It's l9ng but w9rth it and the tables and figures are full of information. give you some idea if it's something you should look at with your doctor. http://www.wjgnet.com/2218-6204/full/v3/i1/1.htm

Have you thought of having her evaluated by a neuro that specializes in neuromuscular disorders? Again, it's a rare subspecialty but might be worth it to rule out anything more insidious.

Nice to hear from both of you! So glad you are so improved!

My cortisol used to run at the high end or just a point or two over the high end of the scale. Now it runs at the low end or just a point t or two below it. Not what any doctor would diagnose as Addison's. But, luckily my endocrinologist is familiar with POTS and the fact that many of us end up with adrenal fatigue. He also is someone who believes that there is an art as well as a science to medicine and that you have to treat the whole patient, not just the lab results. So, in that, respect, I think I'm lucky because I'm disabled completely without the steroids.

The main treatment for adrenal fatigue is corticosteroids (hydrocortisone or prednisone. ) There are some alternative medicine treatments but I don't know how successful anyone has been on that note. I used to be up and down the adrenaline roller coaster. Now, I'm mainly down and have to take steroids to mimic a circadian rhythm or I'm toast.

Hi Rick, There are people that do recover from dysautonomia. You probably don't see much here from them because they tend not to linger on the forum once they feel better and can get on with their lives. I personally believe that finding and getting good treatment for the underlying cause is one of the keys to resolving the dysautonomia. It sounds like you have a good start on that. Take care, Katie

Yup. Every eye exam, any over bright lights, flickering lights like a fluorescent bulb about to die or driving through trees when the sun is shining through them, various panning scenes on the tv, driving at night and suddenly having oncoming headlights (which is why I avoid night driving if possible.) My POTS neuro, who is also a certified headache specialist, says it's more related to my migraine syndrome than POTS itself. However, he also openly admits that there is a strong connection between dysautonomia and migraines that they don't understand yet. So take that all for what it's worth. All I know is that certain visual stimulation can make me deathly ill and extremely disoriented. It can trigger acute migraine pain, nausea up to and including vomiting, presyncopal episodes, vertigo and some other disoriented feeling that I can't quite describe. Also, loud or particularly high pitched or repetitive noise can intensify these effects and/or cause them. I have hyperacusis, so this part may be particular to my issues. I have found that the "HDVision" sunglasses can cut down on some of this effect both day and nighttime and even viewing electronics. Also dimming the brightness on computer screens, using lamps vs. overhead lighting when possible.

I can have it when I'm not acutely presyncopal but it's one of my warning signs to get to a prone position soon or I will be presyncopal at some point in the near future.

Nice! Thanks for posting!

Can she arrange the timing of her doses and nap so the nap happens right at the end of the morning dose? Then she could take her second dose when she wakes up. Or some variation of that arrangement so she delay a dose by 1-2 hours while she naps at the end if the prior dose. Or she could try napping with her upper body propped up significantly. I used to have to sleep like that due to GI issues and it takes a few days but you can learn to adapt to sleeping like that.

I get the speech issues too when I am presyncopal. I always think people are going to think I'm drunk because that's what it feels like. Sometimes when I feel like I'm slurring, I have mentioned it to my mom or roommate and they have said they can't hear it, but there have been a couple of occasions when they brought it to my attention too.

Yes, the Inspire forum is the one associated with EDNF. I have heard of prolotherapy but don't know much about it. I actually heard of it on the Inspire forum. If you do a search on there, you should find some info/feedback on it.

I didn't know about the tethered cord. That's a big EDS complication too and often comes along with people with spinal instability. And while we're talking about it, this is all making me wonder about chiari malformation as well. So, one big question would be, can you get a doc to give you a script for an UPRIGHT MRI with views in flexion and extension of the neck, not a regular mri. (They have to specify that they want regular, flexion, and extension views.) It's the gold standard for diagnosing cspine instability and chiari. Many docs will say it doesn't give significantly more info. My mri looked completely different from my upright mri. And it makes sense because gravity and the weight of your head and body completely change the posture of the spine when you are upright. Have you joined the forum at www.ednf.org? They do not have a published physician list on their site but they are pretty organized behind the scenes and have people that run support groups and maintain physician lists by area of the country and also for other countries as they are international also. If you get on their forum and ask for doctor referrals in your area, they are good at getting information to you. You might find someone who can help more with this issue. If that fails, you might ask Dr. Jaradeh if he will consult with Dr. Clair Francomano (geneticist, Baltimore, MD) or Dr. Fraser Henderson (neurosurgeon, Greenbelt, MD or Chevy Chase, MD). They both specialize in treating EDS patients and are sought after internationally for their expertise. Of course, that's all if you feel like you need more than you are getting from this doc.

Hi Lucy D, Ha e you checked out the physicians list on our site? You can search by state. Here's a link! http://dinet.org/index.php/physician-list?view=physicians

Has she been evaluated for C-spine instability by a really knowledgeable EDS specialist or neurosurgeon familiar with EDS patients? If the chiropractic adjustments made that sort of difference, it may be something to check out. Spinal instability, especially in the cervical spine, is very common in EDS patients.

MomtoGiuliana ' s post reminded me....(sad that I wouldn't have remembered this all by myself ) I have developed fine tremors in my hands mostly, although occasionally in my lips and arms. They definitely fluctuate with the severity of my POTS symptoms. Some days I don't noticeably have them, while they can be quite obvious when I am having a bad day, up to and including not being able to hold utensils safely or being able to hold a cup to my mouth unless I use 2 hands. I have sent spoon fulls of food flying across the kitchen. I realize it's not quite the same thing you are describing but it is somewhat similar. I pass all neuro exams and it has been attributed to my POTS.

Hi Tom, It was just suggested to me that I have my neurologist evaluate me for occipital neuralgia as a differential or comorbid diagnosis to my migraines because of the pain I now experience at the back of my head. It may be something for you to look I to for your daughter, if it hasn't been already. This is a link to a thread I have going on the topic. In the thread, there is a link that explains the Co dition.

My only suggestion is an evaluation for Ehlers Danlos Syndrome. Although you don't exactly describe a typical set of symptoms, it can have some strange presentations because it can affect any and all connective tissue which is 85% of the body. Two of my most debilitating EDS symptoms I have are chronic tendonitis and bursitis. I just saw a new rheumy last week and he said some of his EDS patients have "joint" pain just as severe as his RA patients specifically because of the tendonitis at the tendon attachments and the bursitis in the joints.

Okami, Sorry you are struggling with so many aspects of life. I think the suggestions above are a good place to start. Do you have a disability attorney work g for you? The reputable ones do not get payed if they don't win your case. If they do win your case, they take a percentage of the backpay that will be awarded by SSA, so it's still not money you have to pay up front. Take care, Katie

If you go on YouTube and search for POTS spasms or something similar, there are videos of POTS patients who experience spasms in their body some of which are quite severe. I don't really have any info on them and I watched them so many years ago I don't know if there is information in the videos but it's worth a try.

It doesn't surprise me that a PCP would not prescribe an ADHD drug for POTS. I have only ever heard of POTS specialists giving those scripts because it is an off label use of those drugs. I know it has been successful for some POTS patients, so it is worth pursuing but my guess is you're going to need to be under the care of a POTS specialist to do it. Also, they may want to try more traditional POTS treatments first as many of the more standard drug treatments can improve cognitive symptoms and it may be hard to get insurance to approve the ADHD drugs without trying the more traditional routes first. Hang in there.

Lynda, Is another name for what your daughter has "Pure Autonomic Dysfunction "? I haven't heard of what you are calling it but I'm in the USA and I have found that there is sometimes a difference in what things are called between here and the UK. I know there are a few members here with Pure Autonomic Dysfunction. It's not as common as POTS but we do have a few. Also, I might suggest you take a look at information on Ehlers Danlos Syndrome which is often found as an underlying cause of autonomic dysfunction. The Hypermobile type is the most common and can cause anything from mild to severe joint pain. A good resource to find good accurate information for EDS is www.ednf.org . Welcome to our community. Hopefully others will chime in. Katie