StayAtHomeMom

How can you tell which issues you have and can it change?

I agree. Drinking only water makes me pee like crazy. I drink a 16 oz bottle of Mt dew and I do OK. Coffee is way too much for me too.

I don't know. Beta blockers seems to be the go to. My pulmonologist recommended last year to go to metoprolol and that helped me better than the calcium channel blocker. It was great for about a year. Right now it is not helping as much as I would like but for the first year it was amazing. And it didn't bother my breathing like the propranolol.

I think that anxiety is the worst part of having POTS. I don't have my underlying cause yet so it bothers me. I am the type of person that wonders why. But there are tests to rule out the really bad stuff. Once those tests are run it is pretty much learning the tips and tricks to feeling better and adjusting to your new life

Out of curiosity why would EDS matter to a chiro?

A good Chiro won't touch you without doing x-rays and a full examination. Maybe they can find something to show your doctor.

If you look up the criteria for diagnosing hEDS it is some Beighton score, but also other criteria as well. And it can be a mixture. It doesn't have to be just that though. My mom has RA and hers does that. I have also been looking at ankylosing spondylitis and it can do that as well. So I am sure there are lots of things that can cause it. I would suggest if it really bothers you, see if you can get in with a rheumatologist or an orthopedic. That is my plan in the near future. I am hoping it is the pathway of finding my underlying cause. I assumed my body breaking down early was because of having kids early, but I am beginning to see that it is not normal, even if I had kids in my teens. Have you ever seen a chiropractor?

I have the same thing. I am in my early 30s and I have had it since my teens. Occasionally I have to have my husband pull the joint out and let it slide back in. I have recently figured out bending and twisting at the same time makes my knees mad. I always thought is was normal too until a few years ago. I think mine is related to whatever my underlying cause is. I believe it is genetic as well. My kids seem to do it as well. I suspect hEDS or some other connective tissue disease. I am working on getting in to see a specialist to rule that stuff out. Do your joints get stiff after a while of them not popping? Like your hands and knees? Mine do. I have tried to not pop them when I was seeing a chiropractor a while back and I would hurt, and the Chiro noticed my joints quit moving quite so easily when he would try to adjust them. Thought it was interesting.

I deal with my fatigue by drinking Mt dew every morning. Coffee does weird things for me but just that jolt of Mt dew helps me. Tell your new doctor you are being weaned by one doctor but you don't want to be. Patient feedback is important. That being said the longer you are on a high dosage the more it can give you undesirable side effects. Most medication is given based on risk vs reward. I hope you feel good about your new doctor and it seems like you have a long bumpy road ahead of you. Good luck.

I used to have issues at the dentist. I talked to her and she uses the non epinephrine numbing and that has helped me a lot. I am excited for you that everything went well. Knowledge is power. And I am glad your nurses and staff are helping you out so much.

Yes. In fact I left work early on Wednesday and took the whole day off Thursday because of it. It is like I am exhausted and foggy all day. Until 9 at night then I am wide awake until 1 or 2 in the morning. It is frustrating to say the least. The good news is my kids are on vacation and my boss is really understanding. I know the reason my body is rebelling right now is because of all the work I am doing. We are in the process of moving our office and the company I work for is small. So I have to physically help out where I can. I am trying to not overdo it but it happens. I used to nap during the day but I have quit doing that about a year ago. I found it messes worse with my sleeping pattern. I have found if I stick to a schedule and sleep 12 hours I do OK. But it is so easy for my schedule to be messed up. It is a constant battle. Hope you feel better soon. By the way (assuming you are female) check your worsening of your symptoms by your cycle. You may be surprised how it lines up and you may be able to predict times it may be worse.

I want to start with I am so sorry about your body malfunctioning (at least that is what it sounds like to me). It sounds like you have finally found some amazing doctors and we all know how hard that can be. I think the doctors are being cautious. You have a lot of overlapping symptoms between everything you have or could have and without removing some problems you will never get it straight as far as what is causing what symptoms. My boss has the same issues. He has multiple things wrong that could cause a single symptom so they don't know what is causing that specific symptom. Have you been tested for the epstein-barr virus? My nephew's mom had that and caused unbelievable muscle weakness. It was kind of impressive that she couldn't even lift a smartphone. It sounds like you need reassurances. Do you have any family? Or a close friend? Someone that can help hold your hand through this scary time in your life? I hope you get some relief soon. Stay strong. And it will get better. The doctors are finding abnormal things so I am sure they will get to the bottom of it. Remember doctors are only human and can make mistakes.

I would say it is probably fine, but check with your doctor and pharmacist. The reason it is not advised is because the pill may not be perfectly 10mg. I have personally cut pills but the exact dosage is not required. I would get with your doctor though just to be sure.

I would stick with the BP cuff to get your reading. BP numbers are important to go with you HR numbers. Your HR can compensate for low blood pressure which would make your diagnosis/treatment different. I did a poor man's TTT every day for a month so I could show my second opinion cardiologist. My first cardiologist said I didn't have any kind of autonomic dysfunction and refused to put me on a tilt table. 2nd said that my data was not normal, put me on a TTT and diagnosed me with POTS a day or two later. With my data it did not always jump the minimum 30bpm but it did jump at least 20bpm consistently. The TTT showed I stayed at the 130s for the full 45 minutes. I was exhausted but I had one answer. Good luck and I hope you get some answers soon.

I have similar issues with pushy doctors and vaccines. The HPV vaccine is just too new for my liking. It makes me nervous. They kept trying to push it on me til I got too old then started on my oldest boy. I just tell them every year no. And to the flu shot as well. As far as not realizing how much POTS effects daily things, I know what you mean. I was recently told by my a relatively new friend who I have known about a month and a half that she sees me do certain things and asked if that was because of my POTS. I thought I was mostly doing OK but apparently it was obvious to a new person in my life. My boys are very understanding and they don't get upset with me when I can't take them to the pool because I am too exhausted after work.

I accidentally stumbled on salt made me feel better. I just craved it bad before I knew what was going on. I would dip French fries in salt like most people do ketchup. I worried it might be too much but all of my tests are normal sodium levels. I can't imagine what it was before I ate so much. I don't dip fries as much now I just add salt to most of my meals.

I have this problem. I am not sure why. I am meaning to talk to my specialist the next time I see him about it. Just because it bothers me not having that easy to check indicator telling me to slow down or go lay down.

Personally I don't count the amount of salt. I just go by what my body says. Some days I have more than others by way of table salt and occasionally pretzels. That being said my mom says I over-salt all of my food so maybe I intake more than most people. I do the same thing with water. I go by my body when I should drink more or not. There are days where I only drink 1 bottle of water. Others it is like 3 or 4. My specialist told me I should increase fluid and salt because most people with POTS has low blood volume. I am sure there are some out there that don't.

I don't know if the type would make a difference. It takes about 60 seconds to start reading once you swipe to that screen. There is a heart in the corner that flashes when it stops flashing I count to five and that is the number. It is not perfect but it is convenient. No way could I personally wear the chest strap ones. There are days my breathing is so bad that I feel like anything on my chest or neck makes it impossible to breathe properly.

Did you wear the Garmin above your wristbone?

It automatically checks HR every 2 minutes. It misses short bursts of tachycardia. I am looking for something that continuously checks as well but this has been the best so far. In theory you could broadcast it and it may do continous but I am not sure. It does show you real time numbers though.

I have a basic blood pressure machine, and I wear the Garmin HR. (Kind of like the fitbit but water proof) At my office I have access to a pulse oximeter and a handheld EKG (it is very cool) but I generally don't use that. I only check my blood pressure if my body is freaking out badly. With my medications it is pretty stable so I don't worry that much about it. My garmin takes my HR about every 2 minutes on its own and when I feel crappy I can check it in real time and it gives me a ballpark to tell me if I am overdoing it or not. My Garmin has helped a ton with anxiety. And with it being waterproof I can shower and swim with it. It is not perfect (especially in the water) but it is always with 5 bpm of a pulse oximeter. So close enough for me. For blood pressure machines you should use the cuff that fits by the measurements on the cuff. Not all cuffs are the same. And if it doesn't fit right it can skew your results. You can try to learn how to manually read blood pressure as well. I have noticed a lot of manual cuffs don't have the metal bar (usually pinches me). Also depending on the machine and the person a wrist cuff can be accurate and can hurt less.

I was diagnosed by a non specialist. But when he started me on meds and I was having breakthrough tachycardia he was recommended by the local EP to contact a specialist 3 hours away. Having the specialist that knows what is going on is helpful in the long run. But I hate traveling that far personally.

Do you wake up with or without an alarm. Sometimes when I wake up with an alarm my body panics.

Years ago, before my POTS showed up I had chest pain that was diagnosed as costocondritis. So when I get that chest pain I take aleve. My POTS chest pain is different and it is more is line with when my breathing gets worse so I end up just laying down or going to sleep. Sorry I couldn't be more help. I would try talking to your doctor and see if there is anything you can do. Such as sit in a certain position. Or if there might be a medication to try.