StayAtHomeMom

I would never say that. But if you already smoking it doesn't hurt to change to vaping. And a glass of red wine has been one of those debated thing for decades.

When I feel crappy and salt load it usually feels like 30 minutes or so and I feel a little better. I am not sure if that is accurate for everyone but that is how it is for me. Usually I just make sure I am eating enough salt and when I start craving salt I give in to it.

If you have vasoconstrictor problems have you tried a dilator? The only one I can think of is alcohol. And I recall someone telling me a glass of red wine a day can help up your blood volume. I am sure there are others but that is the only thing I can think of. BTW if you have never smoked I would get the low nicotine doses. Smokers develop a tolerance and can handle a lot more nicotine than the average person. I think 0.6% is as low as it goes. 1.8% is roughly the strength of a regular cigarette. Just as an FYI.

Since I have gotten better I have tried cappuccino. I never liked regular coffee unless it had lots of sugar and creamer. I can not tolerate a cappuccino. It makes me tachycardic and jittery. That being said I can drink 3 bottles of Mt dew and it not bother me. Doctors seem the vary on their opinion of coffee. Most say black is fine for most health issues. I think you just have to experiment. It might have been just that day was a bad day to try considering I had already had Mt dew. I just don't miss it that much at this point so I don't bother. That being said every morning I have a 16 oz. bottle of Mt dew to help jolt me awake. Without it I feel dazed and out of it for hours after I wake up.

Just wanted to say congratulations. I am excited for you that you got the help you needed in order to feel better. 🎉

I prefer the Garmin over the fitbit. The Garmin is waterproof and I have swam, showered and did dishes with it. I have had it for a year and an half and just noticed the band is starting to break last night. So I am ordering a replacement band this week, but also thinking about upgrading to the most recent one ($130) because it has a built in O2 sensor as well as the HR monitor. The only draw back is the HR monitor checks HR every 2 minutes. Sometimes I have spikes it misses. But other than that the HR is pretty accurate as far as I have seen. I even bought the same thing for my sons so I can track their information as well (I suspect my oldest has POTS as well as me). Definitely a game changer for me.

I say run the tests as far as the doctors are willing to. I agree with you and feel it is just part of dysautonomia but maybe you will get lucky and it isn't. Have they did a nerve conduction study yet?

I think a lot of us worry about the damage having tachycardia could have but so far mine is fine. I haven't seen anything about it causing issues in the long run.

I wonder if there is a genetic commonality between hashi's, RA, and Lupus. My mom has RA, 1 sister has Hashi's, and another sister has Sjogren's and Lupus. I know they are all autoimmune but I wonder if there isn't a genetic mutation that causes some autoimmune and not others.

I ask because when my mom got menopausal that is what she would do when she would hot flash and when her BP was on the rise due to her high blood pressure.

If part of your letter is making you anxious I would contact your doctor. Some of my doctors have a portal and it makes it very easy to just shoot them an email and they get back with me in a day or less.

No emotional or hormonal changes for me but I do get that. It is like I can't lift my feet higher than an inch to try to walk, but at the same time I feel like they won't hold my weight. The last time it happened I took my midodrine and it cleared up. Not sure if it was just a sudden drop in blood pressure or what. It does not happen often for me. It is those once in six months kind of symptom. I would try your normal dysautonomia doctor and see if they have any insight. Emotional struggles and stress like what you are going through can cause dysautonomia flares. Sending positive vibes your way.

Not sure if you can buy it but a read an article a few years ago about an iron fish that you can place in your food while it cooks and adds iron to it. I guess it would be similar to cooking with cast iron pans.

I ask about the sun exposure because I get it half of the year. If I go outside it will bother me sometimes a week or more. It is kind of a weird thing. Was diagnosised with Polymorphic Light Eruption a few years ago. Mine is itchy and burns when I itch like a sunburn. But is a raised bumpy rash. Do you take any medications that could cause redness? Or have hot flashes? Or high BP?

Have you seen a doctor or dermatologist about it? I get rashes but not just redness. In fact last week my dermatologist just did a biopsy on my collarbone area. Could your redness be from sun exposure?

Anemia can cause low O2. Has her B12 been checked? Also some people run a little lower. Has she seen a pulmonolgist?

It sounds like your experiment is working. It will be interesting to see if it keeps it up. I know nicotine ups HR and BP so be careful with the up of HR.

My mother in law is really heavy and I have watched her diet a few times over the years. Over the past year she has lost about 100lbs on the keto diet. She raves about it so I have decided to try it. It is very restrictive, but I feel better without carbs anyway so I figure it is worth a try. Spoke to my doctors and they are OK with me trying. Right now I am trying to find some supplements to prevent the keto flu (to me it looks like a POTS flare-up). I am looking forward to losing this weight. And I hope it will help my body feel better. I was not built for my extra weight. My PCP actually asked me earlier this year if I quit smoking because of all the weight I gained.

I am wondering if my weight gain hasn't made me a little worse. I gained about 30 lbs in the last year or so and I feel like the "little" symptoms are worse. Starting a diet soon to try a shed some of it.

Have you tried different things for the caffeine? I can do a certain amount of soda but no coffee. A bottle of Mt dew a day helps me considerably.

Personally I smoke cigarettes ( I have for over 15 years) and I notice it helps some of my symptoms most of the time. That being said if you don't smoke I wouldn't pick it up. It is a nasty expensive habit that is hard to break. When I first got sick I was using an e-cigarette. But when my breathing issues started I thought it could be from my e-cig (I had just changed the delivery system and I was going through soooo much juice. I was smoking the equivalent of like 8 packs a day). I went back to regular cigarettes and was smoking very little. But like I told the doctors the cigarette would help. They looked at me like I was crazy and said that is what is causing your breathing issues. I have done some research and nicotine helps some people with POTS. It is a vasoconstrictor. (It is why smokers can handle standing outside in the cold for their cigarette). It is not a cure all. And it doesn't work all the time for me, probably because I am a addict. But it does do interesting things to the body. I would not recommend anyone picking up smoking (e-cigarette or otherwise) but if someone already smokes, e-cigarettes are a good alternative.

Medical Marijuana has different strains. The different strains can affect how much pain relief you can get and not be as high. Depending on your state regulations, you might be able to find a dispencery that can help you find the strain you need. Honestly if you need it, take the pain med. If you have a headache most people take the over the counter meds and don't even think twice. They just want relief. Same with your leg. If it hurts take the meds. If I remember correctly you go to a pain clinic. And they don't prescribe the pain meds they did without trying other stuff first. My friend swears by CBD lotion for her pain. It is not perfect but she is allergic to a lot of medications so she tries a lot of alternative stuff. If it makes more you comfortable try other stuff that may help. Just make sure you check with your pharmacist and doctor so there is no contradicting medications.

Walking causes my heart rate to jump. A few months ago I was sweeping my back patio and I jumped to 170 and stayed like that. Through my Beta Blocker. I wear a Garmin and when I don't feel good I will do a quick HR check. It tells me when I need to go lay down. Any kind of exertion cause cause a spike. My BP stays pretty normal. Hydration levels can effect my symptoms. When I am slightly low on my hydration little things can freak it out. For instance, tonight I am playing Diablo 3 on my Xbox with friends and my heart palpitations are going haywire. I am also slightly dehydrated due to overworking and not enough water. It is a constant balancing act. I would try to get a TTT as soon as possible. That way the doctors can start treatment for whatever they find. At the very least you have something "funky" going on.

Have you tried seeing a chiropractor?

I have back pain but not like you describe. My back will feel like it is going to snap in half if I move when I wake up. It gets better within a few hours of me moving though.