westernmass

Love it! Glad to see this posted Jackie feel free to PM me any questions...I get acupuncture regularly and am getting my masters degree in acupuncture and chinese herbal medicine

I'm currently getting my masters degrees in acupuncture and Chinese herbal medicine the only reason I tried and fell in love with it is because I got sick with dysautonomia and western medicine seems to continue to have no answers for me! Acupuncture is great for acute and chronic issues- I see more success with acute for me personally. For instance if I go in with a migraine, or severe muscle pain, or coming down with a cold- I leave without those symptoms. I haven't had that experience (yet!) with dysautonomia, although I remain hopeful and it definitely helps me MANAGE my symptoms, even if they so come back. Through a couple people in the acupuncture community, I have found someone who has supposedly treated pots (what!? I was shocked someone would even know it by name!) and am working on getting in contact. Prices will depend on geography, but the $50-150/treatment seems accurate. If cost is an issue for you, try a "community acupuncture" place-3 to 8 people are treated at once in the same room, and costs roughly $10-25/treatment. I have also found Chinese herbal medicine to be my best bet with my digestive issues, so may be worth finding an acupuncturist/herbalist. Two more points: make sure you find a liscenced practitioner! (ie NOT just a physical therapist who will stick needles in you- that is NOT the same!) and treat it like any other doctor- you may need to try a couple people before you find one who "gets" you and can treat you effectively For those in the north east us who feel like waiting 3 years (LOL): I want/plan to figure out pots/Dys from the traditional Chinese medicine perspective so I can help all of us heal

For me it seems the day I got sick with POTS, I became hypersensitive to medications, even those that I had previously used. As far as food- depending on the doctor it's food sensitivities, intolerances or gastroparesis, so I'm unclear on that.

I just want to second chaos' statements. I also struggle with neck pain and one sides headaches. So frustrating! Where are you located? I'm in the northeast (us) and the seasonal change is definitely messing with me- hot cold hot cold. Hope you get some relief soon! Fwiw I get some neck pain relief (and therefore headache relief, they are related for me) by taking a muscle relaxer and using a heat pad on my neck.

Dude. I feel the same way. I've been so off the past couple days!

I have always said l-lysine is worth trying for anyone who has problems with any of the herpes viruses. I used to get shingles/cold sores horribly badly, but a friend suggested lysine (OTC at any whole foods or health/supplement store) and anytime I feel either coming on, I load up on it. For me it's a miracle! Always check with a doc., etc. I believe (can't remember where I heard this) it can be a little rough on the stomach and/or cause slight constipation...I usually take magnesium and have both with a meal and it's generally fine.

Also inspiring she got to where she did and is able to do so much!

Obviously stinks that she has POTS, and that she got eliminated, but it's nice it's in the news! I actually really wish she'd been more able to speak up for POTS while on the show (vs after being eliminated). Several years ago, there was a contestant (did she win the whole show? Can't remember...) who was quite sick with lupus, and I think it really helped get the word out.

Have you had your back/neck thoroughly checked out? I have no idea what is causing your symptoms, but since both times it was spurred by lifting something heavy, perhaps there is something to do with nerves in the upper back area that would control breathing, etc...perhaps they were injured or compressed or somethig like that? Sorry you are dealing with this! Good luck

Nothing for advice, but wanted to pipe up and say I also am often bradycardic at rest.

I do/did. I responded badly to the courses of antibiotics. I also have fructose malabsorption (both dxd with the breath tests) and the GI says the issue is small intestine motility, neuro says gastroparesis... The GI system is basically one tube LOL and the problem in my case is the food not moving/digesting correctly. Of course all three issues can be causes or effects of each other, or of autonomic dysfunction. Feel free to message me. I'd be curious I hear more of your story as well.

My neuro calls it "Autonomic Dysfunction" vs pots or dys. I agree a better name would be helpful. People (doctors, friends, etc) don't get an idea of the full picture because of the focus on postural orthostatic tachycardia... Although that symptom is often the one (or one of a few) we all share.

1. My primary care doctor! When I first went to him with my POTS symptoms (dizzyness, fainting, chest pain) I was saying things like "I'm sure it's just anxiety" and HE told me no way, this was not anxiety, it was something physiological, and sent me to the cardio who then diagnosed the POTS. He has been there every step of the way, and even though he doesn't have a lot of experience with POTS is always willing to run tests, refer to specialists, etc. 2. My neuro. She is really the first doctor who I feel knows more about POTS/Dys than I do, which is reassuring. She is also very kind, like my primary, and never makes me feel like it's in my head. 3. My acupuncturist! Has given me the most symptom relief and inspired me to start master's degree in acupuncture and TCM. I hope to be able to help people like us

I don't.

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Green smoothies are a huge part of my diet, so look into those! Also soups and stews... Especially in a crock pot or slow cooker so everything is very cooked by the time you eat it! Mashed potatoes, rice, sweet potatoes. I am on a similar diet- as "soft" as possible. Basically trying to avoid the liquid/baby food diet which is the next step for me. As you hinted at, the hardest part for me is resisting the urges to eat my favorite, "normal" foods- and every time I slip up it's so painful. It's a really horrible process, but it's possible to do in a healthy way. Sorry you are also going through this! Good luck!

I do! Probably tmi to share that LOL hit wanted to be a positive light in this discussion! Of course depending on the day/days and what my symptoms are like...it doesn't always happen. But I've been in a long term decision, before getting sick, and so far we have maintained ok . Should mention that at this point I don't have serious respiratory issues and even when I'm tachy, for me it isn't usually at a "dangerous" level

I take with a lot of water and make sure I eat something

About six months ago I developed "vertigo" which I only get while reading or laying flat (feels like everything else I spinning, body feels almost like on a boat) which is different from my presyncope dizziness. No answers yet! Hope you find some

Charlotte- I recently read the same article. Plus salt has been linked to so many other health issues. In my experience: I avoided salting for the above stated reasons until about two weeks ago (I've been sick since feb 2012). My new neuro really insists on it... I'm prescribed 3 grams of salt tabs (1g 3x/day). For the past week I've only had one or two per day... I have such a mental block about it. Plus my BP isn't super low, and lately has been fluctuating a lot (hypo then normal then hyper, lol). Anyway, she insists so starting today I am upping to 3g/day. In addition I have been salting my food. I don't really notice anything yet... Possibly some nausea/bloating, possibly helping retain fluids, but not sure yet.

Alex-- thank you for all the links! I'm making my way through them. Chaos- interesting stuff about b12. Since our issues are so complex and affect so many organ systems, it is overwhelming to try to figure out what is causing what, where it all starts, and what treatments to attempt. There are so many possible directions to go... Hanice- yes, definitely dysautonomia, lol. I've been sick for a year and a half now. I had a very sudden/acute onset, but I do seem to be gradually getting worse although mentally/emotionally am doing much better than when first diagnosed. And yes, yay for good doctors hopefully something good will come out of this. I'm new to the salt and compression stockings. Not a fan of the salt but I seem to be tolerating it ok. Anyways, I know there are old posts about GP so off I go to search through those ...

Since I've been taking Anatomy & Physiology as prerequisites for my grad program, I've recently learned about how intertwined the endocrine and nervous systems are. Epinephrine, NE, aldosterone, ADH, etc. etc....there seems to be so much overlap and all related to dysautonomia. It makes me wonder if I'm missing out on something. Has anyone seen an endo and had success? What issues seem to be common with POTS/dys? What sorts of tests or treatments are available? Has it been helpful (or a waste of time?)? Just curious I think it's important to approach our issues from as holistic a viewpoint as possible since it's all connected. Would love to hear experiences and opinions!

Hello everyone I FINALLY had my appointment with a (FINALLY!) knowledgable, helpful, nice neurologist who treats several POTS patients. After my last experience with a "specialist", I was dubious, but she turned out to be really great. Yay! Finally someone who seems to know at least as much as I do about POTS, if not more (lol), who has a game plan, and who is familiar with the newer research and treatment options. I have some updates/questions, I would really love some help with. She is running some basic blood work, I am monitoring BP/HR for two weeks, and based on that stuff will determine a path of further testing/treatment options (potentially genetic testing for mito diseases, EDS...some other stuff I am brain fogging on). 1. Unfortunately, she confirmed my suspicions about gastroparesis being the root cause of my GI issues. She said she is totally confident I have GP, that the majority of her Dys patients have it, and that it wasn't even worth doing the gastric emptying test (which my GI is reluctant to do) because it is toxic, and to just assume I have it and treat accordingly. This means an even more restricted diet (also dealing with fructose malabsorption, most likely caused by the SIBO I have, both most likely caused by GP). Questions: I have visited G-Pact, but does anyone have any other good GP resources? Any diet advice? Does anyone know about taking probiotics (it seems that if I have SIBO, adding more bacteria to a slow moving GI system could make it worse?) Does GP get better? What I've read is pretty depressing... 2. I am showing (early) signs of neuropathy in my hands and feet. We are hoping this is caused by vitamin deficiencies/malnutrition again due to the GP (this seems possible; I've noticed lately my skin is dull, have serious bags under my eyes, my nails are brittle and breaking) and if I am low in iron or b12 or something that could cause symptoms of neuropathy, I could supplement and "fix" it. Questions:Who has experience with this? If this is NOT caused by a deficiency, is this a sign my POTS is progressing? 3. I've noticed since getting on oral birth control back in the early spring, my blood pressure is much higher than it used to be (used to be 90-110/50-75) and I'm seeing a greater range in BPs. I've had everything from around 100/70 to 124/90 (and while in the ER several weeks back due to reaction to antibiotics, clocked in at 155/95!). The high end of this is new to me, should I be concerned about this? Sometimes it drops on standing, but more often it's been raising on standing. My HR seems to be doing whatever it wants, relatively regardless of BP (sometimes it's brady, sometimes it's normal (60-70 for me), sometimes it's high (80-90 for me) while resting, and sometimes it will do the POTS thing and jump 30+ bpm on standing, other times it drops 10+ bpm, other times it stays within 10 bpm. Questions: Does this seem like "normal" POTSy behavior? I am not monitoring at exactly the same times each day, sometimes it's before/after eating, with compression socks or without, having taken salt/not...could the variations be due to that? What does hyper-POTS look like? Are those BPs and HRs MUCH higher? My HR generally doesn't go extremely high (but does generally jump 30+bpm from my resting). Thanks everyone, I know this is a ton of update/questions. I really, really appreciate any input.

That is horrible!! I've had shingles definitely once and I sort of think I have it now (but also have poison ivy atm) but anyway- sorry! Just as an FYI- the supplement l-lysine really really helped make my shingles go away.

There is a facebook group called "Athletes with Dysautonomia", and I believe a few of the people in the video are from that group. It's a nice group if you are into fitness, working out, and/or sports. I was hesitant to join since I'm not an "athlete", but was told anyone with pots/dys who is working out (or working on working out!) is an athlete! It's a nice and supportive group for anyone who's interested.