Tammy

Even though it is neat to read sucess stories, it also is discouraging to know that some people have POTS only to the degree where they can still push themselves though the symptoms. I can push and push and it only makes me worse. If I keep pushing, I end up going backwards. Really strange how some of us have POTS so severe and others have it, but can still physically push themselves.

Hi! I would recommend trying the xanax before your appointment so you know how your body reacts to it. We (those of us with POTS) tend to be more sensative to meds which you probably already know. I take Xanax on an as needed basis for the last 4 years and it is the most valuable medication for me. It keeps me from ending up in the ER less frequently and it does tend to lower my heart rate, which for me is a positive side effect. It makes my breathing better, calms my shaking, chills, weakness, constant peeing, etc. when I'm having adrenaline surge symptoms. Since I've only used it for physical symptoms, I'm not sure how it will help with anxiety for the root canal you are having, but hopefully it will help with that some. For me, Xanax doesn't affect my mind, as if I'm concerned about something, Xanax doesn't affect me in a good or bad way, it just calms the physical symptoms of POTS.

Yes, I agree with tearose. The breathing you describe has been used a long time for anxiety disorders. If it works for you, that is wonderful.

130 bmp laying down should be addressed. If the holter monitor doesn't show anything, ask your doctor for a beta blocker (in a very very very tiny dose... and start off with 1/4 of the amount and SLOWLY work your way up to a therapuetic dose). Also, Xanax may help you but you need to discuss this with your cardiologist also, and stress the fact that you need to get through the next 5 weeks... again, if he/she agrees to try Xanax (if you aren't already on this), take a tiny amount (I take 1/4 of the smallest dose and it helps keep my heart rate and adrenaline surges down, not perfect, but enough to get through a few hours that I need to when necessary). You will know if the amounts of either is too much as you will feel even more lathargic/weak/lightheaded/short of breath, etc. If so, lower the dose even more and keep your doctor informed of this. Hope you can find something to help you get through the next few weeks

Hi! I'm wondering what type of jobs are available for us who are home bound? I really need to find something I can do from my computer and I'm very computer literate, however, I really don't know how to go about doing so. I see way to many sites that offer work from home information, but know that many of them are scams so avoid them. Anyone have an ideas on who a person can contact or a website that is real/trustworthy? I would look into being an online instructor, however I didn't complete my education for teaching and don't have the energy to pursue it at this time. What type of jobs (for those who are homebound) do you all do in order to pay the bills? Really need some ideas Thanks!

I had so many fillings in my teeth since I was 7 years old. Over the years, they have needed to be replaced as they have been cracking. I really think that with so many people having amalgam fillings, and are healthy, it's probably not connected for most of us. But it doesn't hurt to have them slowly as fillings do get old and when they crack, it can expose you to a small amount of toxin.

Hmmm, after reading this I'm wondering if we should all be taking Niacin! If it works for a pet, couldn't it help us too?

If I remember right I also have low cortisol levels, not low enough to treat as in an adrenaline disorder, but low for what it should be. I too get so weak and have spells where I can't even make a sentence and have to lay down and feel like even if the house was on fire, I'd be to weak to get myself up... that's how extreme the weak spells get. Same thing here... I'm not afraid to leave the house, I actually love getting out, but I also go with someone as I get too weak to drive at times, so need to have someone get me back home too.

I do wonder sometimes if my cortisol levels aren't a big part of my symptoms, because maybe, for me, the level is too low, even though the range the doctors go by falls in the normal limits.

I noticed you mentioned you've had 5 CT Scans in the past year. Please read on the safety of these... there is a fair amount of information as to them being a cause of cancer in years to come - cancer can show up from 10 - 20 years after the scan is performed. When my daughter had one this past year, the radiologist actually said that this risk was real and that is why they only do CT Scans when there is no other test that can be done and the benefit outways the risk.

Sounds like an adrenaline surge to me. If scary thoughts are filling your mind, and than you have the symptoms, than it is probably anxiety. If your body is having symptoms and you feel 'mentally calm', than it's an adrenaline surge. I tried many SSRI's and they made me SOOOO much worse. Paxil was the worst of all those I tried. It really varies by person. What has worked for me is drinking Ginger Lemon Tea by YOGI and I also add a sprinkle of ginger to it and if I drink a few cups of that, it really helps calm the adrenaline surges and also stops all the peeing that goes with them (I think I peed 4 times in a half an hour this morning).

Take care

Try not to get anxious about walking, but if you need to sit down, make sure you have a place to do so. For walking your kids to school, if you are able to do so, you could use a walker with a seat, so that when you need a rest you can just turn around and sit for a bit.

Hi and welcome to DINET! I know what it's like to have everything change overnight as that is how mine also started, but not from a spinal injury/injection as yours. It's been almost 5 years and everyday I keep hoping that the medical field will find something to help us all in the future. As for coping, know that you will not be the same person you were, but in many ways you will change for the better. The fabric of your life will be woven with gratitude and humility for the simply joys in life. You may also find that there is strength in surrendering because it takes more strength to accept help when we would all much rather do things for ourselves even though our bodies aren't cooperating with the desire of our mind.

I worked in special education for 12 years, not as a teacher, but had also done student teaching in college and I can say that you need to be up on your game with little kids. I student taught elementary aged kids and you always are moving around, bending down to their level or squating by their desk to talk to them when they raise their hands and have questions, etc. Also special education teachers usually have a few kids who have physical limitations themselves, so if they are in a wheelchair and need help getting in and out of their chair for bathroom breaks, etc, you will need to be able to lift them out and help them if an aide isn't available at the time to do so, even if you are just teaching them reading, writing, math, etc. Typically this is something the aide would be doing, however it is still a requirement to be able to do so. Also kids with behavior disorders can be physically challenging at times -- we had a special education teacher loose her eyesight when a third grader head-butted her in the face. Teaching is a very demanding job both mentally and physically. Hope this sheds some light as to what you will be up against in your career choice. If you decide to teach adults or secondary students most of these situations wouldn't apply.

Last night my dog of 13 years died and I haven't slept and keep crying off and on when thoughts of her come to my mind. I'm wondering with all the tears I'm shedding and no sleep, if I need to be doing anything to help my body get through this as best as us with POTS can. I'm actually thirsty so I am drinking some water periodically, but can't think of anything else I need to do other than get some sleep which is so difficult to do when ever time I close my eyes I think of her and all the silly things she use to do, or the way she looked at me, or how she would seem to take care of me when I'm feeling so sick, etc. Oh boy, more tears are coming as I write this. Thanks for any advice

Thanks for the pat on the back! We all need to support each other and hearing encouraging words makes all the difference

I'm happy I was able to take a bath today, and even though it will take a few hours to recover from it, I achieved my main goal for today I do hope to clean out the refrigerator also, as there are a few science proejects starting to grow inside it, but whether that goal for today happen or not, my body has yet to decide!

Blessings

I'm going on my 5th year and compared to the first two years and off/on the third and fourth year, this one is getting a 'little' better, so I'm hopeful that each year will get a little better, but my neurologist said that POTS is lifelong, no matter how you acquire it as it possible that changes your DNA in a sense. He stated that stressors such as menopause, and other physical changes /health issues will always flare symptoms - so I'm not looking forward to reaching those years which are at least 10 years away for me, but can't think about it as a lot can change in that amount of time. Mine came on after a really bad virus, so I guess I should fall into those that recover '80 percent', but I've never had a doctor tell me that I will ever fully recover, but may at times function better and then at other times I won't function as well. I guess I just take it hour by hour each day and accept that this is now my life, because fighting it hasn't made things any better and I was more frustrated before I gave in to this new life.

My co-workers son has this diagnosis since he was about 18. He is around 26 now and doing well. He is at a high risk for cancer because of it, but he had surgery to prevent continued damage.

Todd,

I'm one that is in reclinerville mostly for the past 5 years. You are not alone! I also am surprised by how well many of the people here function, but as with all syndromes, there are different levels of severity. I sometimes wonder if I didn't have it for 4 years before being severely ill, as I funcitoned pretty well but had to be careful not to exercise too much or I'd get really bad tachycardia, which I thought was bad enough. Than when I had a virus and suddently got so weak I couldn't even walk, I realized that something else was wrong. So it probably depends on what a person has experienced in relation to how severe they consider the level they are at to be.

Blessings

Yup, I also have this happen, pretty much as you describe.

Just have to add another "OMG!" Obviously this nurse didn't have much for common sense or has some pretty bad medical training/schooling!

So I decided I was going to go to our local grocery store for one item, as I know that I'm too weak to do more than that. However, once I was all dressed and ready to go, I was mostly to exhausted to go grab a bag of frozen berries, but determined as always, I went. It is about 5 degrees here, so the cold was a bit of a problem also, however, I just kept pushing. So I get to the store, walk to the freezer section, grab the bag of berries, head back to the registers, check out, walk to my car, get in, drive home (this is a very short drive, thankfully) and walk in the door and basically flop onto the couch. It sometimes amazes me how little I can do. I know that there are days that even going from the bedroom to the bathroom are difficult, but sometimes I just want to feel normal and do something normal, like running an errand as such. Anyone else relate?

As for the medical marijauna, I really am not sure how a person with POTS would react. However, if it reduces pain, and you can function better with it, maybe some of the side effects from the marijuana would be worth it? Not sure.

With regards to the double up of beta blocker, for me, my doctor has told me to take another 1/2 dose when needed, but no more than that in a day. I do know that when I've gone to the ER, they have given me additional beta blocker medication and base it on how much I am getting in my daily dose. When people have severe spikes in their blood pressure and go to the ER, they are given some medications, and one of them may be a beta blocker to get the BP back down. So with all that, if you talk to your doctor and they okay for you double dose, or an additional 1/2 dose when you need it, I would think it should be okay. I take a small dose, so maybe this is why adding another 1/2 dose is okay for me to do on really bad days. If my tachycardia is really bad from extra stressors, such as exercise, virus, weather, etc., upping the beta blocker and also adding in a small amount of xanax really does help.

Everyone's advice is so helpful and gives me a better outlook on the sitation we are in. This support group really is such a wonderful blessing and I don't know what I would do without having a place I can go to where everyone understands the struggles of living with POTS.

Bellamia - You definitely did not make me feel bad with all your ideas. They actually inspired me to try a few creative projects with her. Thank you

I take Atenolol also, and it took almost a year to adjust to it. I finally figured out that I needed to take a baby dose and work my way up, and that helped in the adjustment. I now take 12.5 which is a half a pill at the lowest dose and it does help the heart rate. I literally took less than a 1/4 of a pill to get it adjusted otherwise I wasn't able to tolerate any BB. So before you rule it out, try taking a baby size dose first and work up VERY slowly to a therapuetic level.

Wow, you guys are wonderful! So many great ideas that I can't wait to give a try. Thank you so much for all your input and support.

My guilt falls more into the fact that we adopted our daughter and I sometimes fear that she may have been better off with her biological family, as it was a situation where her birth parent felt very overwhelmed with so many other children that she chose adoption for her last child, which is our daughter, however is a very active and healthy person otherwise. I wasn't nearly as sick as I am now when we adopted, so the situation really has changed and so I'm left wondering at times if we really did the right thing, but yet I love my daughter soooooo much and hope that she'll be happy with her life even with a sick mommy. I guess I just sometimes think and wish that she was biologically ours, especially with my health situation as such.

It is so cool to see someone having had the ANSAR testing done. I've read enough on it and really think that is exactly what we all need to have done, but to find a doctor that will have a respresentative from their company come in and do the testing, is impossible.