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Thanks for sharing Kelly! Didn't realize you were there already. Be well, and I hope you learn lots and meet some interesting people who will share their dysautonomia experiences.

Great topic. Am convinced going gluten free would help a lot of people with neurologic issues as well those with suppressed immune systems. I've been 100% sugar free for seven years, and eat a really 'clean' diet. Organic, and no processed foods etc... Want to go gluten free, but am not 'ready' to do it right. No cheating etc... My diet's so limited right now, and sometimes the only thing I want to eat is pasta. There's a gluten free vegan restaurant we love, and when we eat there I always feel like my body is saying 'thank you' all day long.

Katy, it's great that Verapmil is helping you. Am glad you found something. I researched it, and it has side affects that I already have with pots, particularly the flushing dizziness, lightheadedness, fatigue and nausea. Some possible side effects of the drug are headaches, facial flushing, dizziness, lightheadedness, swelling, increased urination, fatigue, nausea,ecchymosis, galactorrhea, and constipation.[9][10] And then it mentions this about calcium channel blockers: This has led to their use in treating hypertension and angina pectoris. I'm hypotensive, and you say you are too. Am confused. Here's the article. http://en.wikipedia.org/wiki/Verapamil Am really glad it's helping you! To be honest, I've finally begun to wonder if any drug is going to help me. Tried 2 bb's and Clonidine and ugh, they were all pretty awful. Seems like a lot of us are hyper sensitive to medications. Arizona Girl, Thanks for the information about Labatalol. Not sure how I'd respond to the alpha/beta combo, But something to keep in mind. I just found this from a website that quotes Dr. Grubb on this subject. Pasting below: In the hyperadrenergic form of POTS, patients often respond best to agents that block norepinephrine or its effects. One agent that is particularly helpful is clonidine HCI in either pill or patch form. We start the oral form at 0.1 mg PO 1 to 2 times a day and filtrate upward. The patch form of clonidine is quite useful because it provides a constant and continuous amount of the drug for up to 1 week at a time. The combined and β blocking drugs labetalol and carvedilol are quite useful in some patients as pure β-blockers may exacerbate symptoms (because of unopposed receptor stimulation). Methyldopa has been reported to be useful in some patients, as has phenobarbital. In addition, both the SSRIs and norepinephrine reuptake inhibitors are useful in select patients. I just researched Methyldopa, and wow...No thank. Too many side affects. Am wondering if any hyper pots people just do without meds for tachy and BP due to meds making things worse?

A very interesting link to histamines and mast cells, one I hadn't seen before. Am in the process of being worked up for Mastocytosis at M D Anderson by the chief of Hemotology/Oncology there, and there's some info here I haven't seen before. Ironically, the part about herbal supplements doesn't apply to me, (can't tolerate herbals...Shared about that in your post about Klonopin.) But this is a very interesting link about mast cells and histamine. Thank you for sharing it.

Amy, I know nothing about breaths per minute, but I agree...Biofeedback is amazing. Causes the brain to switch from beta to alpha waves, and the impact of that is more powerful than any pharmaceutical drug I've taken. Am glad for you. Does your insurance cover it? Soak it up. It's a powerful modality in the hands of a good practitioner. Keep us posted on your progress.

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Hi all, Am wondering who here with Hyperadrenergic pots has tried Clonidine and/or what meds you're taking for your tachycardia? I just finished a trial with Clonidine and had a bad and odd reaction. Worst was with the extreme high tachy episodes while sleeping and sitting, (not related to postural changes.) So I'm done with Clonidine, but had very high hopes for it. I had asked about Mestinon in another post, but am interested in any/all prescription medications hyper pots patients are taking. Thanks for your help with this. Am seeing my cardiologist next week. He's knowledgeable about all kinds of dysautonomia and is open to suggestions. I'd like to share some options with him to get my heart rate down, because this is a cardiologist who is very keen to start me on cardio therapy, and I'm wanting to start cardio therapy, but suspect he won't agree until we get my heart rate down! Any ideas or thoughts would be appreciated. Thanks! Hope everybody has a good day tomorrow.

the doctor explained that POTS is not really a diagnosis, as in a distinct condition with a clear treatment protocol. Rather, POTS is a symptom of autonomic dysfunction (I.e. dysautonomia) -- which can have many causes and take many forms. That's about as well stated as any definition I've read...well said.

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I'm due to start cardio rehab soon. My cardiologist explained that it takes a very long time to work, and it's done while your HR and BP are being monitored and with fluids etc.. He explained that for POTS patients it helps the sympathetic and parasympathetic nervous system adapt to postural changes. Another way is to say it helps with orthostatic intolerance. In many POTS patients the heart is atrophied due to de-conditioning, and if all so it will also strengthen the heart and make it larger, and 'conditioned. I'm looking forward to trying it, I have a lot of faith in the cardiologist I see. As for insurance, I have 40 sessions of physical therapy a year. I haven't checked to see if this falls into the 'physical therapy' category, but my insurance has covered everything thus far, so am assuming it will. Hope so! I'm looking forward to trying it, I have a lot of faith in the cardiologist I see. Here's a quote from Levine, (not my favorite Pots expert, but whatever) Here's what he says about cardiac reconditioning... Pasting: However in the chronic phase, the hemodynamics are dominated by the physiology of cardiovascular deconditioning - and the evidence is that when we reverse this pathophysiology, by increasing the amount of blood the heart contains and can pump with each heart beat, that HR goes down, sympathetic nervous activity goes down, and the patients feel better.

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You go girl..You can do this Issie. Changed my diet years ago, and as you mentioned our diet is in our control. Completely. After a few (or many months) of changing diet what feels like denial becomes a powerful sense of knowing that 'food, eating, diet and health' are all connected to a powerful sense of well being when we FOCUS on it. After a year or two I could taste organic fruits and veges from non organic and became a connoisseur of 'good' whole foods, and the most important thing I've done in terms of diet...Ever was giving up sugar and all sugar substitutes. Six years ago I cut all sugar out of my diet (cold turkey) and it's a powerful thing. I don't mean using 'diet' sugar products as a substitute or 'natural' forms of sugar...ALL sugars, sugar substitutes and the neuro-toxic diet sugars! Yep neuro-toxic. Lots of research on this, google the different forms of diet sugars. Here's just one example of natural sugar being toxic as aired on '60 Minutes' http://www.cbsnews.com/8301-504803_162-57407203-10391709/sugar-and-kids-the-toxic-truth/ I was a vegetarian for 15 years and didn't eat beef, chicken or dairy. I didn't feel better and didn't feel worse. Since going 'sugar free' I've felt a profound impact. No cheating and no wanting to cheat after the first few months. An easy start for people who like to 'ease in' to a new diet change is to get rid of all processed foods. If it comes in a box or a bag, it's processed. If the list of ingredients is long, but it back on the shelf. Eat Fresh! Whatever diet you choose, keep it simple. Try something new. Challenge yourself. Fat free, sugar free, gluten free, vegetarian or vegan. If you're craving something (dairy maybe) it means you might be 'sensitive to it' not necessarily allergic but it could be causing some immune problems. Whatever you 'think' might be an issue, try giving it up, or easing off it, and keep a food journal. Surprise yourself. This is an amazing opportunity to take your health in hand without a doctor. So do what you need to do but please consider your diet as a source of health and also as a way to improve your health and mood. Good luck and Happy Holidays!

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http://www.stars-us.org/files/file/Clinical%20papers/110912-Hyper-POTS%20Proof%20copy.pdf

Many hyper pots patients in this study. Here's the link http://www.stars-us.org/files/file/Mestinon%20UT%20final.pdf

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KellysavedbyGrace, meant to ask above if you have high dopamine levels?

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