Birdlady

Linda I can also relate to the empathy. My husband said he can't believe how much of a jerk he was to me at times. He had no idea. We've forgiven each other for all of that and it's behind us now. But I also learned that it's pretty hard on the care giver too. I can understand why he got frustrated and upset with me at times. When theres no easy solution or answer you feel stuck, trapped and helpless. It's like you are just watching your spouse fade away before you. I truly believe your husband will get better. Take care.

Linda I can't lie. It is not easy whatsoever. Financially we are broke because neither of us can hold jobs. We keep going, but I do hope there's an end in sight for us... I want one of us to get better. Hopefully for you two, it won't come to this and he will get better. I don't wish anyone to have to experience both being sick. Emotionally it's one of the hardest things I've ever gone through. It's probably making both of us more sick because of all the stress.

Heat intolerance by far. It's makes all of my other symptoms 1000 times worse.

Wow Linda, yes my husband developed POTS/CFS a few years ago. We know for a FACT he was not always sick because he was my "control group" for BP and heart rate readings while standing. hah! I hope it really is just a virus and he will get better. You gave me encouragement earlier tonight, so here's me returning the favor. *Hugs*

I can understand your concerns. I was worried about the medicines used too. Sadly, my first TTT where meds were used was terribly done. They started the test without everyone in place and the tech was sitting there talking to me... I was already clearly showing I had POTS and the doc said he wanted to use Nitro in me to "see what would happen". I think it's very cruel for docs to do that if you are already showing a clear diagnosis. Needless to say the Nitro made me feel horrible. HR went up to almost 180. I never fainted though. Apparently my body just won't faint, no matter what...lol I hope everything goes well for you.

Thanks for posting this! I have a positive ANA, but negative for Sjogren's for the time being. You never know what the future brings though...lol

Saline has never helped me either unless I have heat exhaustion and that doesn't count IMO. I personally stopped salt and fluid loading after I saw the results of my first TTT.

Yes. It didn't help me, but I'm not your typical POTSy with hypovolemia symptoms. As firewatcher says, you absolutely must be monitored. If you drink a lot of water now, you cannot do that when on DDAVP. You will send yourself to the ER and it can be fatal. This isn't a medication you can just take and do whatever you want with fluid intake. I found the balance absolutely annoying. Since I didn't get any benefits from it with the high potential risk of low sodium, I dont take it anymore. Funny enough I was on DDAVP for my first TTT and I still had a 170 HR. Clearly not doing a darn thing! Anyone who goes on it, should look up the symptoms of low sodium so they know the warning signs!

That's awesome news. I hope it continues to help you! My husband came across upper cervical adjustments a few months ago and I have been wanting to try it out. For those who do not know, an upper cervical doc is totally different than a regular chiropractor who crunches your bones. Someone correct me if I'm wrong though!

In the US, the bottom range for HyperPOTS at some facilities is 600 pg/mL. The numbers you are using looks like pg/mL but you have them listed as nmol/L. Even if the numbers are right, my NE levels were 613, so I can't put an option in since you started at 800 and only go up. Also this website gives me much different numbers than what you have listed (when converting from pg/mL to nmol), so I'm just confused. http://www.endmemo.com/medical/unitconvert/Norepinephrine.php

Rich I often can't vote in your polls because the options available don't work for me. I was considered HyperPOTS at CC. But I do not have high BP. My supine NE was 125 pg/ml. My standing NE was 613pg/ml. My supine epinephrine was <10pg/ml. My standing epinephrine was 22 pg/ml. Dopamine was <20 both supine and standing.

I had another echo done recently since this poll was taken and I still do not have MVP. Everything and I do mean everything was blamed on MVP for many years. It was the worst diagnosed I was ever given because no docs ever listened to me. I struggled for nearly 7 years because of that diagnosis. Any time I'd even mention my heart rate or dizziness, my docs would immediately tell me it was MVP. I still have mild regurgitation on my mitral valve and quoting from the report "Mitral valve leaflets appear mildy prolific and redundant." But there is no MVP. I'm thinking there never was, but the person who did the original report wasn't very good at reading it.

@Linda That is interesting. I have a terrible time with my chest tone. I have to use a lot more air to get the lower notes out and that's tough at times. My voice is naturally very high and my low notes aren't so good, so maybe that has something to do with it. haha! I get short of breath when I do anything while talking on the phone too. I know sometimes I probably sound like I'm gasping for air on the phone... One thing I forgot to mention. When I sing, I start to sweat profusely....haha I figure that has to do with my sympathetic nervous system, but not exactly sure. I come out of our bedroom where I record and it looks like I've run a marathon...lol Too funny.

Issie, as you know I'm a singer. Yes it is extremely difficult! I have had to train myself over the years to control my breathing and some days when it's a bad day, it's still impossible. lol I always sit down to sing because that's the only way I can do it. My HR will increase 20-40 BPM while singing a longer phrase. As soon as I take a breath, it drops back down. I have no idea if this is "normal" or just POTS. It can be unsettling at times... Singing in my chest tone is exceedingly difficult for me. I have to sing in my head tone a lot because it takes a lot less air. When I am forced to go into my chest tone, I'm gasping at the end of even small phrases. I recommend avoiding holding a whole bunch of air within your lungs. I think that's similar to the valsalva maneuver and immediately makes me POTSy! I was singing My Immortal one day and that song is pretty low in some sections, I clocked my HR at 145 during the chorus! Regardless of how I feel physically, singing makes me feel good emotionally. I keep doing it.

If I had this opportunity, I'd go just for the free adjustments. lol I can't say it's help with POTS, but it does feel nice to have no neck and back pain even if it's just temporary. I'm actually shocked some of you are afraid of or have never been to a chiropractor before! Even as a kid, I'd mess my neck up in phys ed or doing something stupid and have to go once or twice a year. I am usually sore 1-2 days later and then my neck and back feels amazing.

I agree with SoliDeoGloria . I have a Garmin HR watch with a cheststrap. I've set my watch to beep at a certain heart rate, so I can just start up an activity and go about what I'm doing without having to press buttons or become too focused on it. I don't have it on me all the time though. I'll put it on if I'm going to my family's house, exercising, working in the yard or running to the store for something. I like to know what is going on while I'm not home or doing some strenuous activity, so if something bad starts to happen, I can see it right away and know to sit down/relax. Without it, I tend to overdo things all the time. My HR can be 170 and Ill just keep going because I'm apparently sadistic...lol

I had this done because my rheumy thought I had neuropathy in my legs/feet. Honestly the test was a lot more uncomfortable than I was anticipating. haha! The needles into the side of my feet/ankles were very painful. The ones in the leg were not painful at all. I was sweating buckets during the test though. I felt like my body was just dumping NE. For the rest of the day, my heart was terrible but other than temporary pain, it's no big deal.

Catecholamines have special handling protocols that must be followed, so make sure they know this ahead of time. But other than that I don't know what else they check for during a TTT. I think the other testing is something separate AFAIK.

Honestly...most endos aren't that good. Most of them specialize only in diabetes. It can be hard to find one that will take you seriously when it comes to hormone testing. Many of them don't have a clue how to interpret the results of the tests any way....

I used to take dDAVP even before I knew I had POTS. I guess I've done things very backwards compared to most people. LOL When I got my first TTT, I was on dDAVP and florinef already. Neither of those drugs did much of anything for what I now know was POTS. With DDAVP I was constantly paranoid about my fluid intake while on it too. As Firewatcher and Issie said, you have to be mindful of your fluid intake. If you are used to fluid loading or drinking all the time, you could very well send yourself to the ER with hyponatremia. It's one of those drugs where you absolutely have to be monitored by a doctor. The benefits did not outweight the risks for me, so I stopped taking it. I'd assume those with hypovolemia from dehydration would see the most benefit on it as long as sodium levels were maintained.

Sorry I didn't catch on to the sarcasm in your post. I suppose the first line of the letter is why I thought it was meant to be sent. My mistake.

I did my 2 minutes of exercise today reaching a HR of 125. I'll do another 2 minutes in a few hours and see how this goes. My heart rate was 145 walking back upstairs after exercising...lol

I personally think the letter from the Joint Hypermobility webpage is way too harsh. Imagine for a minute if someone gave this to you...Would you feel more welcomed in their lives or less welcomed? The tone is very snippy, condescending and standoffish. I think it would push more people away than getting them to understand more. Even though everything in that letter is the truth, you can't just expect your family and friends to stop giving advice, caring (in whatever way they do), relating by talking about joint pain a relative has and saying you know it all and you know what's best etc. ugh... I think this letter would do more harm than good. If someone is offering stupid advice, just nod your head and thank them. Even if you know it's stupid just go along with it. They took the time to look it up and are only trying to help you. It's not meant as an assault on our illness and our suffering. I think at times we are too sensitive and we need to be more mindful of how we respond to others. Any ways...thats just my opinion.

I think we have all gone through this. For about 8 years, I kept hanging on to old relationships. I'd come up with excuses and reasons why they weren't keeping in touch. The best thing that ever happened to me was one of those "good" friends did not invite me to her wedding. I went through my phone, FB and started deleting people who only pretended to care. Perhaps it was a bit impulsive, but it was my wakeup call that the people I used to call my friends were nothing but strangers. Regardless of our past, they did not care one bit what was happening to me now. I needed to let go all of my anger, frustrations and find people who really did care. I am happier now because I've finally let go all of that baggage. I am making new friends with other POTSies and others who have chronic illness. I don't have to explain myself 2632 times when I can't make it or don't want to talk etc. They are also ok with keeping in touch online too and "going out" isn't a necessity. Most "normal" people want to go drinking and do activities I simply can't take part in. So anyways, I know my story isn't exactly cheerful, but it's the truth. I finally just had to cut all ties and move on. I can't make someone care and in the long run it was only hurting ME. Not them.

When I got my methylation tests back, I decided I wanted to start on 500mg GABA because some docs say it is indicated in those with my specific COMT mutations. I can't say that I'm feeling anything good or bad at the moment. One interesting side effect is that it's making my boobs grow....HAHA If that's all it ends up doing, I'll still be a happy customer. I always loved the way niacin made me feel. Even when the flushing got real bad, I liked it...lol From what I've read, niacin will burn through methyl groups. The vasodililation did not bother me much at all. My glutamate levels are more than double the top end of the range. When this was tested, I was not eating any MSG or anything with free glutamics in it, so the problem is with my body and not diet. My α-ketoglutarate levels were also more than double the range. Both of these go along with the mutations that were found in my genetic testing. BUT my urea and ammonia levels are low or normal, so that's where things get weird for me. Where is all of that glutamic acid/α-ketoglutaric acid going? My theory is that my body is using this α-ketoglutaric acid for energy to create more ATP, since my HR's are 150 on a regular basis. I've always thought that my body is eating itself to death and that's why for me exercise is not a good thing. I'm simply increasing the need for these things when I exert myself. It is nice to see that both my genetic test and NutrEval test results are actually finally making sense.