What is your Dysautonomia Treatment?

[halbashes]

Last year, a member of our community started a thread called "What is your treatment?  How well controlled are your symptoms?"  It was quite interesting!  I'd love to learn more about the current medications and/or treatments our community members are using successfully.  What is working for you?  Please share if you will like!

[rjfairweather]

Are you still taking Provigil?  Why or why not?

[Heiferly]

Sorry, it appears that you've found a very outdated thread. In fact, I know for certain there is a more recent thread where a group of us listed our med regimens like this as an example for others. It's probably preferable to either start a new thread like this if you're looking for one, or find that most recent one if it isn't already too outdated.

The reason we emphasize currency for many topics/threads isn't to keep reinventing the wheel but because information changes so rapidly and we want to make sure people are getting current, accurate information. Drugs may be taken off the market, new drugs discovered, new applications for old drugs approved, contraindications noted, etc. Plus content that is unique to the members who posted it here may become outdated as their health or treatment plan changes.

Here's a link to one of the more recent treatment discussion threads, but it's not the one I had in mind; I'm still looking for that one.

www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/medicine-or-drug-free/show/1322689

Ha! Finally found it, and it only took me half an hour (blame that on the pain meds I'm taking post-surgery).

http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/What-medications-are-you-on-and-are-they-helping/show/1367189

That one is likely current enough. I know that I personally have had several med changes since then, but I can't think of any that are particularly relevant for anyone else to know. We'll probably be due for a new one of these in a few months.

Let me (or the community at large) know if you have further questions,
Heiferly.

[mrjn]

thank you all for the lists.. my daughter has been on the same 3 meds for years. I think it may be time to try some others

[somemonkey]

At the moment: Mestinon, Metoprolol, Prozac, Theo-Dur, Concerta, and an anti-epileptic that I forget the name of for migraines. My medication changes a lot though.

[halbashes]

Like Heiferly, I won't list every medication I am taking, but will try to list everything relevant to my Dysautonomia treatment.

- Pyridostigmine: (Orthostatic Intolerance, Muscle Weakness, and Gastroparesis)
- Theo-24: (Vasoconstiction, Respiratory Stimulant, Asthma)
- Ritalin: (Vasoconstiction, ADHD/PDD-NOS Behaviors)
- Zonegran: (Headaches, Seizures)
- Toprol XL: (Dysautonomia, Borderline LQTS)
- Liquid Potassium: (Hypokalemia, Borderline LQTS)
- Fluoxitine: (Dysautonomia, General Anxiety)
- Zofran: (Nausea, Vomiting)
- Multivitamin
- B-50 Complex, C, CoQ10, Acetyl-L-Carnitine
- Supplemental Oxygen, Cooling Vest, Compression Stockings (30-40 mmHg), Pedialyte, Powerade Zero, Nauzene, Glucose Meter, Pulse Oximeter, Thermometer, Heart Monitor, Automatic Blood Pressure Monitor, etc.

I'm definitely able to maintain consciousness more reliably on my current medication, but I still experience daily Dysautonomia symptoms.

[Heiferly]

I guess I'll start since no one else has.  I'm not going to list every med I take; however, I will try to list meds that are peripherally related to dysauto symptoms or commonly comorbid conditions, as these may be relevant to others.  Yes, I know, I'm on a lot of meds.  

Fludrocortisone-   Orthostatic Intolerance
Midodrine-   Orthostatic Intolerance (Taken every 6 hours, including overnight.  I do   not get supine hypertension whatsoever, and the benefits are that I can get up to use the restroom in the middle of the night and don't have to wait on a morning dose to kick in to start functioning when I wake up.)
Promethazine-   Nausea; Antihistamine
Famotidine-  GERD
Polyethylene glycol 3350- IBS-C (PRN)
Bisacodyl- IBS-C (PRN)
Depo-Provera-   Eliminate Menstruation
Lorazepam-   Anxiety
Topamax-   Migraine Preventative
Maxalt MLT-   Migraine Abortative (PRN)
Trazodone-   Sleep
Provigil-   (Narcolepsy)/Brain Fog
Premarin Cream  -Won't get too personal, but dysautonomia can effect your reproductive system too
Multivitamin
Baby Aspirin
Folic Acid
Klor-Con M20-  Hypokalemia
Calcium+D

*Waist-high 30-40 mmHg compression hose, worn infrequently due to difficulty getting on and off
*Cane for added stability when legs are weak OR
*Rollator walker for stability and also to have a seat at the ready if I feel syncope about to occur and can sit down in time to avert it; one of my biggest helps!
*Shower seat and slide bar hand-held shower head (These shower heads add great flexibility for using a shower seat at a low height, having other members of the household shower standing at full height, being able to hold the nozzle or mount it, stop the flow from a button right on the shower head rather than trying to reach the knobs on the shower wall from your shower chair--they're great, and not to pricey either!!  Here's an example picture if you're not sure what I'm talking about:)
http://www.americanbathind.com/showerhead.jpg
*Powerade zero, salt loading, avoiding triggers
*Home blood pressure cuff and continuous heart rate display watch (the kind you have to wear the chest band with) for home monitoring of vitals

I would say my symptoms are not necessarily well controlled if by that one means that they are prevented or cured by the medications/treatments I use.  However, realistically speaking, by combining medications with adaptive equipment and lifestyle changes, I have been able to take better control of my illness.  A huge part of that has been getting home health care.  (By the way, if anyone has questions about home health care, I'm happy to answer as much as I can.)

[TomJesKat]

myself-
NCS
Florinef, IV hydration, Klonopin, vitamins, Reglan, Topamax, Theophylline, Airway clearance therapy, Asmanex, pacemaker, Phenergan prn
Im feeling really well most of the time

wife-
FD
Atenolol, Clonodine, IV hydration, Mestinon, vitamins, Klonopin, Phenobarbital, Physical therapy, Paxil, Zonegran, EGCG, Methylcellulose, pacemaker, Diastat prn
She is having problems with her eyes and high blood pressure but feeling well

sister in law-
FD
Florinef, Bisoprolol, Mestinon, Clonidine, egcg, IV electrolytes, stockings, Gastrostomy tube, Methylcellulose, Airway clearance therapy, Phenobarbital, Topamax, coq10, Physical therapy, Paxil, oxygen, bipap, cooling, wheelchair, pacemaker, Diastat prn
She is having anxiety cognitive troubles and high or low blood pressure and problems with feedings with many crisis episodes