StayAtHomeMom

If you are worried bring it up to your cardiologist and ask for a stress test or an echocardiogram. Anxiety over this issue is not going to help you with your POTS flare. I would try to trust them. Until they give you a reason not to, most doctors know what they are talking about when it comes to "normal" issues. Be well. 

I get it too. Not sure why. I try not to worry too much about it. It doesn't last long and it usually just makes me wince. I notice shifting position when it happens prevents it from doing it again. 

Maybe a nerve shock?

28 minutes ago, jklass44 said:

My doctors and my pharmacists both sometimes tell me different things... Despite that, I’ve never had any issues, but everyone is different.

I feel you on the congestion that won’t give though - so annoying!! Hope you find some relief soon. 

I have noticed that too. 

I feel like I am almost done (we suspect the flu). So hopefully by Monday it will be gone. 

35 minutes ago, MeganMN said:

True enough, but the beta blocker is preventing the tachycardia so it seems like it would be fine. It is a vasoconstrictor and would raise BP but for most of us that is not an issue! Anyway, your mileage may vary but I have had to take it some in the last few months and it has been okay! My pharmacist said it was not an issue for short term.

So probably a good thing I have not been taking my midodrine this week, due to having to take cold medicine.

1 hour ago, MeganMN said:

Oddly enough, I have felt better with less symptoms when I take the Sudafed, but according to the pharmacist they are okay to take together. 

When I spoke to my old pharmacist a few years ago he told me I shouldn't take it because I have tachycardia issues and Sudafed is a stimulant so I will make it worse. Personally I don't care right now, but that comment makes me more cautious to use medication. 

I am wondering if anyone has had any interactions with their beta blockers and different cold medicines. I am specifically worried about Sudafed. I took some today because my stubborn cold won't let go. I feel tons better but the congestion just won't give. I feel like it will be fine to take for a day or two. But just wondering if anyone else has any history of taking these together. 

My specialist is a neurologist. If you can't find a specialist try finding a young doctor. Or a NP. They seem a little more open minded and look things up before they answer a question they are not sure about. 

The TTT would probably help with more data. The more data the doctor has the better chance to get the right diagnosis. 

1 hour ago, dannyg said:

No meds at all. Cardio doc says no meds. Salt and plenty of liquids.  BP laying here in hospital been running about 110/70. They are keeping me because tbey habe me filling up some urinal thing. Some 24 hour sample colleection I think she said.

 

Good they may be checking your urine for catacholmines and/or sodium. If you have HyperPOTS that is a totally different treatment. 

My vitamin D levels are always low. Usually teens. With the high dose once a week for 6 or 8 weeks it will come up to 30s. But 3 months later it is back down again. We only use vitamin d milk in the house and I smoke outside so I get my minimum 30 minutes of direct sunlight a day. I am not sure why my levels are always low. Doctors don't seem concerned. They say just keep taking the vitamin D supplement. Which honestly I mostly don't. It is a waste of money. It never moves anything and I suck at taking most meds as directed. 

Prior to my recent diet change I was drinking a small amount of kefir everyday and staying away from heavy foods. That helped. Recently I switched to the keto diet to help lose some weight and my GI have gotten loads better. I wouldn't do anything unless they can prove something is wrong. In the beginning they thought I had bad acid reflux. Gave me prilosec and Zantac. Ended up in the 23 3 days later due to a bad reaction. Made them do a scope. Turns out there was nothing wrong. 

I wonder if the the medication he gave was just too much. I thought my midodrine would do that to me because it does raise BP. But that with my metoprolol averages out fine. My midodrine is a 5 HR drug to use as needed though. Have they tried you on a small dose beta blocker yet?

From what I am understanding IV fluids seem to help everyone on here that has tried. Have you found an autonomic specialist in your area yet?

Do not feel guilty, a lot of people have worked hard to get where they are and it took a lot to get there. We have all been where you are. It does get better. Even now I get feelings of guilt and I feel the need to apologize to my boys. But they always smile, give me a hug, and tell me it is OK. If you feel like the guilt is too much I would talk with a therapist. A lot of people who have chronic illnesses sometimes need some help to come to grips with it. 

22 minutes ago, Derek1987 said:

So I've been on short term disability since September. They stopped it December 12th. For no reason other than that was when I got my brain MRI results and that was the last test done by my autonomic dysfunction specialist. I did a tilt table, 24 hour urine, blood test, and a brain MRI with my autonomic dysfunction specialist. I did all of this within a course of a month.

 

They found I've been exposed to Rocky mountain. My specialist said it messed up my nervous system. My heart rate jumps up 50BPM plus 100 percent of the time upon standing. Verified by the TTT and my own tests. I am taking Mestinon now to help that.

I asked my specialist when I would be able to return to work through their online portal. She said it depends on how I respond to treatment and going over the test results the next time I see her. I actually sent that screenshot to my disability  insurance company. My next appointment isn't until February. 

Here's where the problem came in. My disability insurance company contacted my specialist. My specialist said she never took me off of work and she gave me no restrictions. Although during my visit I was concerned about returning to work and not losing my job. She said don't worry about it. She told me not to even drive. Thats a restriction technically right there. So now the disability company is making it impossible for me to get approved even though they saw what the doctor said on the online portal. In my eyes that's technically a medical document.

 

The off work restrictions started with my primary care doctor then continued with my cardiologist but for some reason my autonomic dysfunction specialist won't vouch for me. She said its in the hands of my primary care doctor. So my primary care doctor wrote a note saying my autonomic dysfunction specialist has me off until I see her again. I sent the letter to the disability company and they told me that's not enough information to support my claim. They want restrictions from every single doctor I go to. The problem is not all doctors give restrictions. My cardiologist said they can only cover me for the time up until I saw the autonomic dysfunction specialist. My autonomic dysfunction specialist won't do restrictions period. The nurse for my primary care doctor says all she can put on the note is what my specialist said. 

 

My last effort with my primary care doctor is to ask if she will write me a restrictions letter. But it seems like they aren't interested in doing that. It's as if doctors are scared to vouch for me. 

 

So it's either I go back to work sick and probably end up quitting because I can't handle it. Or get fired. I have a family to take care of. My wife is actually disabled from bone/nerve diseases. She was approved by the judge November 7th so we are still waiting on that. That's a positive but we literally have no income. It looks like I'm gonna have to go back to work and see how long I last. I stand on my feet the whole day. Man I am stressed.

 

I would try talking to your direct supervisor and see if they can do anything to accommodate you. Usually when you work for a corporation the local people you work with are more understanding. I would talk to them before you head back to work though. Or maybe your PCP can override the specialist in the eyes of your job. 

I am in the same boat. I believe my 15 year old has it as well. I have wondered if I have had POTS longer than the 3 years I was diagnosed. But just a mild form. He is having symptoms about 3 years now. In that time he has grown about 6 inches. Usually 2-4 inches in six month spans. He is also never liked sports or being outside so I worry that contributed. He sees to specialist this month to see. If it doesn't get postponed again. It is time he needs an as needed medicine. He is having too many bad days. 

I take metoprolol. It is a beta blocker as well. There are different kinds and low dose beta blockers may not lower your HR a lot. But my metoperlol definitely helps the heart palpitations. I tried propranolol but I definitely like the metoprolol better. 

I have never fainted. Though I have come close. I have had POTS for over 3 years now (maybe longer). It does get better and you will get through. Drink water. That is the most important. Try tart things to ease your stomach. Green grapes or dill pickles. Dill pickles have a lot of salt and that is good. Try to take things one minute at a time and try not to stress. If worse comes to worse try to sleep through the worst of it. If not don't be afraid to go to the ER. And request fluids. I hear that helps a lot of people. 

On 1/6/2019 at 6:37 AM, Pistol said:

@Derek1987 - unfortunately BP measuring devices that work in the wrists are generally not reliable. There is a lot of change in pressure between your heart and your wrists, the upper arm and wrist can have great differences in readings. I was a nurse for many years and even with the BP machines in the hospitals there can be differences. In many cases the BP has to be checked manually ( the old-fashioned way ) to get accurate readings, even in hospitals. IMO manual BP is the way to go. I have used several different BP and HR devices and found them ALL to be inaccurate. 

My boss has been trying to teach me to use a manual cuff for work (I work in the environmental health and safety field). I have such a hard time hearing their heart beat over mine. 

I think the accuracy of the automatic machines depend on the thickness of the person's arm. My dad has large arms and he swears by the digital. My BP readings are more accurate on the arm cuff. And then I have a friend who has very large arms and an automatic can't read her at all. 

Out of curiosity, have you taken any probiotic to counter your time on the antibiotic? 

On 1/5/2019 at 8:46 PM, dannyg said:

I will do the TTT, I just hope it will happen on one of my "good days" and not one of my days like I had today where I couldn't even walk for 1 minute. 

The smoking.... It don't seem to affect me other than being bad for my lungs. It don't raise or lower my Pulse. I do need to quit though but it's hard right now cause I'm hyperactive usually and this has me resting to much with to much time on my hands. I will have to find another way to occupy my free time when I'm not feeling good besides lighting another cigarette.

 

 

 

As a starting stone to cut down, don't smoke in your house. My cigarette consumption cut in half when I did that. I think do I really want one that bad. Plus it is motivation to get up and move a bit. I have been doing this for about 5 years or so and now when I go to someone's house and they lit up in the house it freaks me out

I have been doing keto since Oct 1, 2018. I have lost 23 lbs as of Thursday last week. My goal is 50 so I am almost halfway there

I had a little trouble with craving in the beginning with sugar. But I have found things that help that. 

my mother in law has been doing it for over a year and lost over 100lbs. My favorite thing is the fact I don't have to exercise to lose the weight, it is just melting off. I am about my weight I was right before I got sick with POTS. Interesting thing is my clothes are so much looser than they have been. 

when I am done losing the weight I plan to go back to hidden carbs (I miss my mountain dew, but diet Dr Pepper isn't bad). I am not sure if it is the bread or carbs in general but I have had pleasant side effects of going keto. No more diarrhea 4 times a day. I have not had heartburn since this all started. And no nausea. My GI issues are tons better. 

beware the keto flu though. It is like having a bad flare for a few days. But once you are over that it is fine. 

So my dizziness is a cycling symptom. In the beginning I had it about 6 months. Anything could set it off. It slowly went away on its own. After 6 months of it mostly gone I had noise sensitivity that would trigger it so I starting taking dramamine (motion sickness medication). 1/2 a pill would usually keep it away. Now (almost 2 years after that) I get it occasionally. Mostly during my period and I go to stand up from laying down. It settles after a few minutes so I mostly just deal with it at this point. 

My son describes a itchy feeling on his legs when he stands to do dishes. He fidgets a lot and it keeps it away. He is not diagnosed yet. But I am and I see a lot of my issues in him. 

I would get a second opinion. My mom had RA and the first few doctors she seen kept blowing her off. Finally found one that took her tests serious and her doctor told me after showing me things on her hands that she has classic RA. He didn't care what the tests said. He was looking at her body and symptoms. 

I feel worse with the heart palpitations as well. I think that is why I love my Beta Blocker so much.

I had two TTT. I didn't pass out on either one of them. The first one I had a friend drive me and I was exhausted afterwards. Technician joked I ran a marathon. My HR was over 130 the entire 45 minutes. The second I did a little better afterwards. I rested about 30 minutes in my car and was able to drive myself the 3 hours home. 

The TTT set off my claustrophobia for a few minutes being strapped but after a few minutes I relax and it is OK. It is draining. Because you can't lay down or fidget like you normally would respond but it isn't too bad. Honestly I would rather do a TTT then the nerve conduction study I had done any day of the week. 

Sitting your pulse should be under 100. Anything over is "high". Depends on your body. 

Have you noticed differences with your smoking?