cmruls

MM, If you don't mind me asking, Why do you take cozaar? Isn't that an antihypertensive med?

Try the netti pot or netti bottle rinse, available at most drug stores/walmart. I've had great results with it. Sort of weird to use.

I agree with you. Gluten(wheat), corn, milk(diary) and sugar all set me off. I believe these cause an allergic like reaction/intolerance. Try an elimination diet. Eat fish, fowl, meat, fruits and vegetables. More protein and less carbs/sugars. I feel much better when I make better food choices.

I am sensitive to most meds and I try to 'pill split' the smallest available dose but sometimes that is nearly impossible or it splits uneven. I found an old time pharmacy that will compound most any med into a suspension and then I can very accurately take smaller doses when measuring with a 1cc syringe.

Do you have any dairy products 2-4 hours before these events? Sounds like my lactose intolerance. I would have all those symptoms after a bowel of cereal or ice cream or too much pizza or a 'healthy' cheese omlette.

I too initially started low dose of 10mg 3 hours before bedtime, and then added 10mg in the am. The am dose was hard for the first few days as it made me tired but that was better after a week on it. I deffinately sleep better at night. After 6 months my evening dose was increased to 25mg. I was told that this is to help suppress the ANS, I'm not sure if it was the sympathetic or parasym, which is active nuring the night. Part of my treatment is to get a good night sleep and rhythm.

I used to have 'stuffy' ears all the time. I felt like I could never 'pop' them and they felt full of fluid. I did two things that really helped. I used the Netti Pot, actually the netti bottle rinse, and after a few days my nose and ears were much clearer. I don't know it it was chronic allergens, allergies, or what but they felt better. The other was after I started treatment for my dysautonomia with coreg and amitriptyline at about 2 months all of a sudden my ears were open after many years of ear fullness. I whould try the netti pot from drug store or walmart.

Too much water drinking will cause your sodium to also go low (hyponatremia) So how safe is water?

I like that "Dysautonomia which is the mother umbrella".

Sugar, gluten and dairy will make me worse. I'll watch tomatoes and peppers and citrus and see what they do. Thanks.

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.

I can't find any consistent dose recommendation. I take 100mg. daily.

I have read that these are different names for the same disease called 'Dysautonomia'. Depending what is the major symptom and what type of doctor diagnoses you, accounts for the different names. If pain is the major sx and you see a rheumatologist you get diagnosed with fibro. If major sx. is tachycardia and you see a cardiologist you get dx'ed with MVP, inappropiate sinus tachycardia, palpitations. If sx is dizzy and orthostatic tachy you are dx'ed with POTS. It seems so confusing. So many names for the same one underlying disease process.

My doc says that coreg(carvedilol) is one of two that act centrally, the other is bystolic (?crosses the blood-brain barrier)to help reset the ANS dysfunction and help control HR and BP. I initially took midodrine for 1-2 months and then it was stopped- I didn't need it anymore. How long have you been on the propranol?

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.

You want to go to ?what from propranol?

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.

Which BB's is everyone using and what dose? I use carvedalol (coreg) 6.25mg BID.

Not healed but healing. If this is just a remission, which I hope not, I am feeling better and I will hopefilly see a measurable improvement at the end of june when I retest. Don't misunderstand me, the breathing exercises are only part of my treatment (maybe it is expermental or research related but it is easy enough and breathing is harmless )and I only started it after 4 months of tx when my parasym response was under better control. My KP actually improved way before the breathing exercises were started. I have talked to others who had this same KP improvement as well as eczema and psoriasis improvement. I do think that the KP and other skin changes are an external manifistation of an internal problem i.e. dysautonomia. The skin is the largest organ in the body and is under some direct control by the ANS. I do disagree on your take on the ansar. I originally doubted it as a measure of ANS function (like how can you actually measure this) but after reading all about it I felt more comfortable and confident with it as a test. It is just that, a test. It unfortunately might be marketed by the sales dept to physicians as an revenue producer, but it is a great tool in the hands of someone who understands dysautonomia. The science is real and it is a shame that they don't emphasise the science and treatment over the money. My doc says that the ansar cost $40-50k for equip and 5 year license agreement and and insurance reimburses about $170 for the test when they do pay which he says is less than 50% of the time. He doesn't bill for the test if it is not paid for by the ins. co. Without going into my past health and workup, it is too early in the morning and too long of a story, I'll get to it later, but my workup has been extensive. In particular the ansar test is the only test that I know of that actually quantitatively measures the sym and parasym nervous system. It is a dynamic, realtime test which measures your ANS response to stimulation and how it settles and returns to a baseline. No other test that I have found can measure this. I am not biased but I do understand the science and mechanism. I could do without the test as a measure because I can tell myself how I feel but it is good to see the numbers and test results improving. Sorry for the rant, off to do errands. I will get back to my story and history later when I have more time. Everyone have a great day, it is so beautiful out today. Cindy Marie

I am satisfied with my ansar test as a measure of following and guiding my treatment and improvement. It is interesting that over these last several months I have had improvement in other areas also. I have had real bad Hyperkeratosis Pilaris on my arms for most of my life. I have seen numerous derms, docs and have tried so many treatments all to no improvement. After about 1 month of tx it has completely cleared 100%. My sleep is better and I am more rested. I stopped 1 HTN med and stopped 1 Diabetic med. My cholesterol dropped 38 points and my HDL and LDL and TG all improved. My chronic nasal congestion has improved the best it has been in years. I am told all this improvement is because so many organ systems are under control of the ANS. Cindy Marie

I've had anxiety for as long as I can remember but when I look back now I think that I had dysautonomia all along. My docs just put my on klonipen and other antidepressants and all gave me diagnoses along that line. I hate being on klonipen and tried to get off it many times and had too many withdrawl sxs. I hope now that I am more balanced that I can do it. My doctor had a local pharmacy compound the klonipen into a liquid so I can go down by 0.1mg every 3-4 days. Breaking the pills was just too hard and imprecise. I don't fully understand the breathing thing and I don't think it is 'the cure', but it is just one more thing in many that may have an influence. So I continue my treatment and breathing and weaning and hope each month continues to improve. He told me a realistic timeline is 1 year. Cindy Marie

Link doesn't work? Thanks. Cindy Marie

Part of his treatment is the breathing exercise. This is to stimulate the parasym and then the sym nervous system. You need to do both together so as not to only stimulate one side and not hte other. I don't know if it works but it is simple enough and my test results are improved. Sit relaxed in a chair, feet on the floor. Breath normally, then take a very deep breath in and breath out slowly where expiratory take 2X's longer than inspiration. Then relax and breath normally and after about 30 seconds, do it again. Repeat for 4-5 times. This stimulates the parasym system. Then while breathing normally, at the end of a normal breath, do short bursts to blow out the rest of the air in your lungs, initally maybe 5 little puffs but with practice you can do more. Then normal breaths and after 30 seconds, do it again and repeat 4-5 times. This stimulates the sym nervous system (sort of a valsalva). This cycles the ANS by stimulating one then the other. Kind of wierd, but he said that like in Yogo where you only take in the deep breaths, you are only stimulating the parasym and not the sym NS and if your parasym is all ready high, this can put you more out of balance. It seems natural enough, simple and easy to do and I do feel better. Sort of a Yin-Yang thing I guess Cindy Marie.

I just had my 2nd ansar test after several months of treatment and my parasym. response is much better (not so exagerated as before) and I do not drop my bp when I stand and my HR is under better control. My doctor said to continue my med treatment and now that I am under better control I can start to wean off of klonipen 1mg BID by 0.1mg every 3-4 days and to be off it completely over the next 30 days. I can't wait! I am also doing some breathing exercises he told me about to also try and balance my ANS. I will be retesting at the end of june to see my progression.

Coreg works best for me. Propranolol was the worst.