Dysautonomia (Autonomic Dysfunction) Community
What is your treatment? How well controlled are your symptoms?
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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

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?
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28 Comments Post a Comment
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499148_tn?1211441916
I take Midodrine 4x daily.
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499148_tn?1211441916
I have Neurocardiogenic Syncope.
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313143_tn?1239386479
I have mild autonomic dysfunction (Hyperadrenergic Sensitivity/Inappropriate Sinus Tachycardia) associated with my CPVT (Catecholaminergic Polymorphic Ventricular Tachycardia).

I can't take Midodrine or Florinef due to my arrhythmia, but my symptoms are somewhat well controlled with Sectral.
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255722_tn?1333378910
My dysautonomia is diagnosed as vasovagal syndrome (aka neurocardiogenic syncope).  When on the tilt table it took <11 minutes for me to pass out and my heart rate plummeted to 11 beats/min.  This was in 1993 or 4.  The doctor prescribed a small dose of Norpace aka dysopyramide to regulate my heart rhythm and prevent the bradycardia.  This succeeded in preventing fainting spells.  Thank goodness, because their next step was going to be a pacemaker (at 19 this sounded like a death sentence).

After about a year, I stopped taking the Norpace.  There was a lot of talk about the dangers associated with the drug, and since I was told that the syncope was benign (as long as I didn't smack my head on the way down) I thought that the tradeoff might be too much.  

Later in life I was diagnosed with PVC's and SVT.  I was given a small dose of Prozac and Metoprolol to depress the sensations and it seems to work.  Unfortunately, the beta blocker lowers my BP and Heart Rate and therefore make me more prone to fainting then I have been for years.  

All in all my situation has improved as the years have progressed.  I was able to carry and have children naturally and I usually faint due to stress, trauma or after the adrenaline rush of some sort of "event" like one that would require me to carry out first aid, etc.  When my kids get hurt I take very good care of them...then I pass out :-).

Have a good day all..
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492869_tn?1285022533
I've tried many different medication cocktails over the years.  My current treatment includes: Toprol XL, Theophylline, Ritalin, Prozac, and supplemental oxygen.

This treatment has reduced my fainting episodes from about 4x per week, to more like 2x per month.  I still have some symptoms in between times, but with the fainting under better control my life is feeling much more predictable.
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511019_tn?1214340923
How do you deal with the falloff effect of the Midodrine?
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511019_tn?1214340923
I guess I'm lucky, my POTS never esculated to the point of needing a pacemaker.  I'm easily controlled by the Florinef, and a high salt diet.  I used to take Atenolol in combination with Florinef, but I don't even need the Atenolol anymore.

My daughter hasn't been so lucky.  A pacemaker has been brought up to her about a half dozen times, but she wants no part of it.  The cardiologist suggested that she have an implantable loop recorder first to be sure she needed the pacemaker, but she wouldn't agree to that either.

Two years ago she finally agreed to a PICC line.  The hydration therapy has made her symptoms much more manageable, but I am sure the pacemaker will come up again at some point.  What are the dangers of Norpace?  Is it a good alternative to a pacemaker?
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511019_tn?1214340923
Your dysautonomia sounds a lot like my daughter Julie's.  Do you have seizures or nausea with your episodes?
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255722_tn?1333378910
For information about disopyramide see the following link.  http://www.rxlist.com/cgi/generic/disopyr_ad.htm

I had to be hospitalized for the first 3 days of treatment to make sure that none of the serious side effects would occur without immediate assistance.  Honestly, I had NO IDEA how serious it was when I was going through it.
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Avatar_f_tn
When I was first diagnosed they just recommended a lot of salt for my neurocardiogenic syncope and IST.  Then that wasn't really working so they tried Florinef, but it made me feel AWFUL, so I just went onto Atenolol to slow down my heart and to try to prevent the PAC's I occasionally have.  Once I got to college the stress of everything made the syncope a lot worse.  I never actually pass out, but the sensations I get when the blood starts to pool (pulse irregularities, palpitations, lightheadedness, weird chest sensations) makes me freak out, and the adrenaline rush turns into a panic attack.  I was constantly weak and fatigued, waking up in the morning meant instant tachycardia, and my sleep was being disturbed from the anxiety so I told my doctors that I wanted to try an SSRI.  So now I take a low dose of Prozac along with the atenolol and now I'm doing much better.
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492869_tn?1285022533
Yes, I have both fainting and nausea/vomiting.  After fainting episodes, I occasionally have seizures/seizure-like activity.  Prior to my Neurocardiogenic Syncope diagnosis, I was treated with anti-seizure medication.  Since my seizures only occur in response to dysautonomia, the anti-seizure medication was basically useless.
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499148_tn?1211441916
I used to take Midodrine only 3x daily.  Now I take 4x daily.  My Midodrine wears off at bed time, so I just go to bed.
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Avatar_f_tn
Hi!  I have POTS and Neurally Mediated Hypotension.  I'm taking Florinef, Lyrica, Norpace, Prozac, Ritalin, and hydration through my PICC.  I've had dysautonomia symptoms for the past 13 years.  My symptom control has varied over the years, but I've recently gone 4 months without a fainting episode.  While I've been doing pretty well, I'm still not able to work.  I get tired very easily, and struggle with my independence.
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511019_tn?1214340923
What is Lyrica?
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Avatar_f_tn
Lyrica is a drug that helps with nerve pain.  I sometimes have nerve, muscle, and bone pain associated with my POTS and NMH.  I didn't treat the pain for the first couple years since it wasn't constant or severe, but finally it became annoying enough that I didn't want to just deal with it anymore.  The Lyrica is working well for me.

Anyone else have the rare pain complication with their autonomic symptoms?
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492869_tn?1285022533
I have bone pain, and musculoskeletal pain.  It's usually mild though, and I've only taken Tylenol for it.  I'm going to talk to my doctor about it this week though, just to make sure there is nothing else going on.
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Do you have constant nausea 24 hours a day?
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183202_tn?1219857259
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.
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492869_tn?1285022533
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!
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Avatar_n_tn
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.  
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492869_tn?1285022533
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?
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612876_tn?1355518095
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
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612876_tn?1355518095
Oh, I forgot to say, my symptoms aren't very well controlled.  I still require a excessive amounts of sleep, have severe memory problems, have syncope every week, have seizures every month, and suffer daily symptoms that keep me home on SSDI.  I'm hopeful that things will start to improve now that my doctors are starting to figure out my diagnosis and everything.  I just started the fludrocortisone recently.
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Avatar_f_tn
My daughter was diagnosed with POTS and has been prescribed (at different times)Florinef, Midodrine, Metoprolol, Ritalin and high salt diet.  None of them seemed to be working as her symptoms fluctuated without any seeming relation to meds.  After researching on-line I found a table that lists meds that work for different types of POTS.  We really now think hers is the hyperadrengeric type of POTS which is not helped by any of the meds she had been prescribed.  
She was just started on Cymbalta which does help with this type of POTS and we are hopeful that it will help her.  Apparently the seratonin is an issue with this type.  She just started taking it last night but I will post again as to how it helps.
It's great to be able to see what treatments are out there since so many doctors just don't know that much about POTS!
I hope more research can be done to find better treatment options to help people lead a normal life!
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612876_tn?1355518095
I was just hospitalized for a week, and they added Metoprolol to my "cocktail" for the tachycardia.  It seems to be working (for that particular symptom only) right now, but it has only been a matter of days, and since the symptoms tend to come and go randomly at times on their own, it might be too soon to say for sure.
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705182_tn?1228760221
I don't know all the medical words. I have a real hard time retaining information have my whole life. as I look back now I have been like this forever. I was finally told I have nmh and pots.
none of the meds they have tried have worked for me. I have been allergic to all of them. my doctor is starting to bang his head.
im always tired,sick and headaches and so on.............................
I dont know what will happen next. can anyone tell me thru their experiance?
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Avatar_f_tn
Tomorrow it is back to the GP for my daughter. The cardiologist (EP) put her on midrodine which she took for a couple days and felt so bad she refused to continue. We have both been diagnosed with "Severe Exercise Induced NCS", however the symtoms (symptoms) are daily and neither of us pass out.  I think we both have POTS.  Toprol and Atenol made me feel terrible so I have refused to take meds.  I did find some relief on SSRI's which my GP gave but she then moved across country without fully explaining what was going on with me or providing a diagnosis.  

Hopefully I will tie this up soon.  I control things naturally by eating small and frequent meals, watching carbs and anything artificial, drinking liquids, drinking coffee after meals to keep my BP up, taking vitamins which include extra B's cal/magnesium, fish oils and herbs which support the endocrine system.  I have also recently started taking St John's WOrt again (although I think 5HTP is better for me - it is more expensive) and recently read about avoiding garlic and nitrites (have noticed that I have a hard time drinking wine).  I also avoid gluten which has helped a lot!  My main problem is fatigue and that is something I have not found a way around!  It is also the most debilitating part of this whole thing!  Anyone have suggest on the fatigue aspect?  
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Avatar_f_tn
My daughter will be seeing a Neurologist next week as someone on this forum let me know that Hyperadrenergic POTS (the type we now believe she has) is better treated by Neuro's than Cardiologists.  I was also told that Sleep Disorders are often a problem for those with this form of POTS and we are going for a sleep study tonight which we hope to be of some help.
None of the meds prescribed by Cardiologist helped my daughter.  She was given Florinef, Metoprolol, Midodrin, Ritalin previously.  
There are some helpful articles by Dr. Blair Grubb that give some insight.  There is also a table on one of them that lists meds and which type of POTS they may help.
You can google his name and find his articles.
I will update after Neuro appt.

take care,
Lynn:)
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