What is your treatment? How well controlled are your symptoms?

[molly0]

My daughter Julie's dysautonomia is being treated with Midodrine, Florinef, Ritalin, and IV hydration therapy through her PICC.  Her symptoms become dramatically worse every evening as her Midodrine wears off.

My dysautonomia is closer to a mild POTS, and is well controlled with Florinef.  My faints are down to about 2x per year, with only mild symptoms in between.

What is everyone else being treated with?

[Heiferly]

I have the internal loop recorder, and I would recommend it to the girl who was putting off the pacemaker.  It has really helped my cardiologist get a TON of information.  The model that I have sends its information right out over our phone line to the manufacturer's monitoring center, and they send reports to my doctor, so it's no hassle.  (This is my second ILR, and the technology has REALLY improved.  Long story on why I went for a second one after getting my first one out.)  The surgery is not very invasive.  

I am also really having increasing problems with pain and nausea.  However, my pain is primarily from out-of-control headaches and migraines and from skin pain.  I thought I was losing my mind on the skin pain, but I finally found what I was experiencing online and it is a real thing.  The medical terms for it are allodynia and hyperalgesia, and apparently it can be associated with migraines.  But I swear I have it way more often than I have migraines; anyone else have severe skin pain??

I have been variously told I have Inappropriate Sinus Tachycardia [IST], Vasovagal Syncope, and POTS in addition to Migraines and Epilepsy.  However, the seizure medicine is not stopping my seizures at all so I am really wondering if they are actually part of the dysautonomia instead.  

Meds:  Topamax, Midodrine, Fludrocortisone, Aspirin, Maxalt MLT, Flovent, Benadryl, Glycolax, Lorazepam, Pepcid, Albuterol, Trazodone
and I drink bottles and bottles of PowerAde Zero to stay hydrated

[halbashes]

To those of you receiving IV hydration therapy -

May I ask?  How did you decide between a PICC or a PORT?  Have you found either to be better than the other?

[sparkysmom]

My daughter has severe dysautonomia.  she is being treated w/ a pacemaker/defillibator IV hydration through a port-a-cath.  she take multiple medications including florinef, midoridine, solatol, digoxin, magnesium oxide, potassium, cortef, phenergan (IV), benadryl (IV), zofran (IV), and many more medications.  The IV hydration has been one of the most helpful treatments.  the pacemaker has been great, keeps her heart rate from dropping too much and helps control the tachycardia.  

[halbashes]

I definitely have frequent nausea, but not constant nausea.  Does your nausea result in vomiting as well?  Perhaps you can ask your doctor about an anti-nausea drug called Zofran.  I hope you feel better soon!

[DragonTU84]

I have MVPD, or MVPS as it is also called. I suffer from panic attacks, tremors, seizure-like symptoms, photosensitivity, chest pains, POTS, lightheadedness, head and body electrical surges, tingling, knot pains, spike headaches, body parts going numb, etc. I use a combo. of Lorazepam for the seizure-like symptoms and panic attacks and lightheadedness and Toprol XL for the chest pain and other physical manifestations. The combo work well in sync together to help alleviate my symptoms. I also get depression/stressed out easily and am overly sensitive to a lot of thing, and hate taking meds. and am overly sensitive to certain meds.

[buffy2]

Do you have constant nausea 24 hours a day?