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cmruls

What Is Your Treatment And Are You Better?

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I was dx'ed with dysautonomia and started tx with carvedalol and amitriptyline along with supplements and eating more protein and very little wheat, corn, sugar, milk and aspartame.

I am sleeping better, no dizzyness, no palpitations, overall feeling much improved.

Last summer I have a tachy episode which landed me in the hospital and they gave me meds to slow my heart and put me in complete heart block. My ANS doctor changed me to bystolic and cymbalta and I have been fine since.

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I take many many supplements. My doctor directs me after blood testing every 3-6 months. I have a schedule, three times a day.

I love Carniclear (liquid Carnetine), Co Q10, Andrecor, Lipoic Acid Supreme, D Ribose, many vitamins and things that improve my immune system like Maitake Mushroom Drops, AHCC, Thymic Protein Powder. I am balanced with compounded hormones and Thyroid.

5htp and SAMe are good too.

It depends on what you need and the symptoms you have.

Supporting your body and immune system is very important. I also eat healthful foods, I get good sleep now that hormones are balanced and POTS is better, and I eat Gluten free foods.

I also make a VERY healthful smoothie daily with many good foods and Greens powder and protein powder.

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My story goes like this: Diagnosed with Dys in Summer 2010 by a cardiologist who happens to care for a large group of Dysautonomics. He sold me this book & told me to read it http://www.mitralvalveprolapse.com/

After reading it and increasing my water intake by ALOT (4L or more a day) I started feeling slightly better. Then he started me on Inderal (propanolol) on an extremely low dose and told me to go really slow with it. He didn't give me any other med as he states Dysautonomics are too sensitive for that. Once the beta blocker was in my system, I felt a little better. However, I could not go any higher a dose than 5mg in am & 5mg in pm and sometimes I feel like even that is a little too much. If I start having a crisis, I'll take an extra 5mg of the beta as it calms my nervous system. Through all of this time I had extreme abdominal pain along with nausea & diarrhea....cardiologist put me on extremely low dose of celexa (I take 2.5mg in am). It immediately helped my pain. However, it's been a little over 2 months now and the pain is returning (as well as chest pain). So I'm not sure what's going to happen next but with water, Inderal, & Celexa I feel like a human being again. So far, I've been happy with my results but this pain has got to stop. I'm seeing my doctor again in a week or so with my fingers crossed.

I hope you feel better and get the answers/treatment that you need. This forum is a great place to get information and support!

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And I also drink a lot of water or poweraid zero but NO gatorade (too much sugar). I did take midodrine for the first two months when I started tx. then stopped it.

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I'm more functional with: compression hose, heat avoidance, cooling vest, 3-5 liters of fluids/day, 6-10 gms sodium/day, and the meds listed below. I also try to stay upright and walk as much as possible, depending on how I'm feeling each day. My pain is a bit better and my BP/HR issues aren't as severe, but mostly this regimen allows me more activity.

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My neurologist didn't want to use tricyclic antidepressants (like amytriptylline) for me because they could actually worsen orthostatic intolerance. Listed among the side effects were hypotension and tachycardia. Just an FYI.

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good question--interested to read the responses

fluids: i try for 3--5 llitres daily ; helpful--but difficult to balance "intake" and :"outflow"

electro light mixture: powdered form : helpful

supplementation with: raw multi vitamin; vitamin D; magnesium/calcium; flax oil; omega 3; b 12

armour thyroid: less fatigue now

antibiotics: when i am taking antibiotics--i feel appreciably better

previously butcher's broom--very helpful in combating hypotension (dev problems w/ tachy and random hypertension so discontinued)

horse chestnut: helpful--aided in temporarily reversing hypotension

stress reduction/meditation/guided imagery: very helpful

compression stockings: helpful especially in warm weather. i use a lighter weight brand

rest, rest, rest : helpful and necessary

heat avoidance--this is crucial

ice cold water rinse for legs--at the end of every shower-- minimizes the effects of showering

no prolonged standing; sitting

low carb diet/organic foods: very helpful

SCRABBLE

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I was told that meds have different side effects at different doses. My doc says that at my low dose of amitriptyline, that it will not cause tachycardia and orthostatic intolerence/hypotension as a higher dose (like depression treatment dosage) would cause.

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I was told that meds have different side effects at different doses. My doc says that at my low dose of amitriptyline, that it will not cause tachycardia and orthostatic intolerence/hypotension as a higher dose (like depression treatment dosage) would cause.

My cardiologist has the same idea. He told me once that I may have to take neonatal or pediatric doses but no more than that...just depends on me! He also chose Inderal as my beta blocker b/c he says it's mild and a much older (well tested) drug.

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I avoid things that aggravate my illness - exercise, physical activity, over-work, lack of rest, high-carb foods; flying, extreme heat or cold, being on my feet for too long.

I'm aware of (and use) the things that soothe my illness - rest, particularly laying flat (including two months of scheduled rest each year); sleep; physical inactivity; low-carb diet; regular fluids (I have no thirst, so I schedule my fluid intake); compression stockings.

I take active measures to stay cool when the weather is hot, and to stay warm when the weather is cold.

I treat the symptoms that are treatable - gentle bodywork for my neck soreness and soreness at the back of my head (I see a neurological physiotherapist and a cranial osteopath); infant ibuprofen for night sweats (when they recur); peppermint and ginger for nausea; a one-off quarter-dose of lexapro if I experience night-time respiratory symptoms or chest discomfort that doesn't resolve with rest; lexotan as needed for anxiety and panic attacks.

I listen to my body - I no longer ignore signs that I'm going downhill. If my condition is worsening, I go back to basics, managing my illness intensively and eliminating any new medication, food or approach that might have caused the downhill slide.

I always heed my anaemia - when it recurs, it is the clearest sign from my body that I need to lay down.

I no longer fight my illness - I have high levels of endurance, so I can keep going long after I should have gone onto bedrest but, 27 years after my first exacerbation, I understand that endurance is punished with symptoms that are more intensive and prolonged.

I'm as patient as possible following an exacerbation or any kind of infection - my recovery tends to be very, very slow, but my functioning returns if I persevere with all of the above.

When I tend to all of these things, most of my symptoms sleep or are significantly reduced.

Finally, I understand that the people most likely to get on top of their illness are the people who source their dysautonomia to an underlying cause - I continue to look for the underlying cause.

With best wishes

Dianne

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I take Midodrine for my POTS and orthostatic tachycardia syndrome.

It help a lot, although I still get episodes where I get light headed and my heart beat goes fast and irregular, but not as sevre as it is when i'm off my meds.

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Great to hear that you've found something that's working for you ...

I'm treating my CFS/ME/FM with orthostatic intolerance (OI) with the Paleo / low carb / low oxalate diet and supplements.

Most of my symptoms are gone and I'm working on the OI now. Oh and I still have PEM (post exertional malaise) but I think it's due to my OI.

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