Birdlady

Yes I have definitely felt this before.

I feel all of those emotions every single day....My biggest one is frustration. I don't want to upset anyone here because we are all at different points in our illness. However I know for a fact, I will never accept the idea of suffering with a chronic illness for the rest of my life...Another 40-50 years of this is soo depressing, I can't even think about it.

Thanks Angela!!

In the health reports, if mulitple markers are used there should be a graphic when you scroll down that says "Marker Effects" with gray, green or red bars. If you click on any of those, it will tell you more about it. There is also an area at the top that says "technical report" and it will give you the SNP's they used to come to their conclusions on risk. That's where they also list the studies too, so that might be helpful to learn more! Also important to remember that SNP's without a lot of research aren't listed in 23andme's health reports. You could have another SNP that is countering the effect, but we really do not know. If you are worried and have questions, then talk to your doc about it. Consult a geneticist. Every day they are learning more and more about genetics. For years they thought everything in between genes was junk and it did nothing. This newest article says they were completely wrong and there are millions and millions of switches in this "junk". We really know a lot less than we think. Far From ‘Junk,’ DNA Dark Matter Plays Crucial Role http://www.nytimes.c...-to-health.html

CC is normal for rs6025. It is the T allele you have to worry about on that one. Thankfully it doesn't seem to run in my family.

No I haven't been able to work since I was 21. POTS is the reason why I stopped working in the first place...At my retail job many years ago, I started to have panic attacks and nervous break downs in the middle of a shift....I'd just become highly emotional, start crying for no reason and was becoming unreliable. I would shake, have tremors and always felt the need to sit down on the ground in between customers. After every shift, I'd sit in the break room for up to 1-2 hours just waiting for my body to chill out. At this point I did not even know I had POTS, so I thought I was just dying! People made up some wild theories at work...I started using drugs or I was pregnant. If I could find a desk job, I could probably do 10-20 hours a week as long as it didn't involve stooping down or prolonged standing. However those are soo tough to get these days. I never finished college either (due to POTS..../sigh), so I have no degree. Nowadays I do drive, but I still don't really like doing it...I'm much more comfortable if someone else drives because that way I know if I start to feel really sick, I won't be stuck somewhere.

Hey Sue. I think you might be confusing the literature because of the way the alleles are being reported...This is why we have to be careful interpreting results because a simple mistake and it is easy to think you have something you don't. I explained this same concept to someone on the phoenix rising board and it is sort of difficult to do, so bear with me here. There are 2 sides to a DNA strand, the plus strand and minus strand. 23andme will always without any exception report results on the plus strand. The reason why this is important to know is because rs3204145 is reported in literature on the minus strand. If something is reported on the minus strand you have to flipped the letters. A=T, C=G. Now here's where it gets even trickier because in this SNP the alleles are A or T. Since rs3204145 is reported on the minus strand, you have to change the A to a T and the T to an A. The risky "A" allele would become a T and the normal "T" allele would become an A. So your AA result there is normal. A good way to double check yourself is by adding the example family, "The Mendels" into your account. The option is in your settings and it helps to see if you are matching theirs genotypes. It isn't a bullet proof method, but it can help a lot. Here's a thread on 23andme that explains what the plus and minus strand means. https://www.23andme....ty/thread/7106/ Hopefully this helps.

I sleep about 6-8 hours. Mornings aren't particularly bad for me. No worse than any other time. I get up, feed cats, make coffee, scoop litterbox, clean up whatever disasters they made during the night...haha! Work on stuff for husband's business, blog, youtube channels etc. I have absolutely no problems while sitting. In the summer, the heat makes me a lot worse though. Some days I make lunch and dinner. Might even make a treat like GF bread... Some days my husband makes food instead. Throughout the day I take care of cats, do dishes and very basic house chores. I don't do laundry every day and I certainly don't vaccum every day...lol But these are all things that eventually get done over the course of a week. Most of my day is sitting at my computer. Not exactly great for deconditioning... I can drive and can go shopping by myself if I choose. My HR's are insane when I do things (170+) yet somehow I am somewhat functional. I can do stuff in quick bursts as long as I don't have to be standing for more than 40-60 minutes and I can sit down for 5-10 minutes to recover. Sitting down for short times, allows me to then get back up and continue on. I have immediate recovery upon sitting. I do not spend time in my bed or in a recliner. I take probably 2-3 naps a week when I push myself too much or I get overheated. Naps are more frequent in the summer. Some variations may occur at times. I may babysit nephew, visit family, go on day trips with my mom etc, but most of the time I am just sitting in a chair at my computer or downstairs, sitting with the cats, doing light chores, feeding cats, feeding cats and feeding cats...lol As far as working goes, if I could get an office job that had absolutely no standing requirements I could do it. I just can't find any of those. Even most receptionist jobs you have to file stuff which requires a lot of stooping, bending down and standing time. Thankfully I don't have fatigue or brain fog.

I have primary adrenal insufficiency, so I *have* to take it. But for POTS it has done absolutely nothing for me. Not even a little bit... I have HyperPOTS without the high BP, so perhaps that's why this did nothing for me. I have been on varying doses and even had both of my TTTs done while on it without any positive effects. I started out low and worked my way up to 0.2mg, but at that level I could not keep my potassium levels stable. I would get severe chest pains from it and that's how I'd know I was low in potassium, but I did have my blood work checked fairly often. Now though when I take it, I only take 0.05mg, just because of the adrenal problems. One mistake in your post is that florinef is not a corticosteroid. It is a mineralocorticoid which is much diferent. I hope this info helps.

When I used to juice 3 times a day, I used a cucumber as a base and then added either a lemon or lime to help with flavor. After that I added whatever I had on hand-- Some of my favorites are spinach, romaine lettuce, cilantro, cayenne pepper and celery. I really like spicy stuff, so this might not be good for you. lol If you are looking for a low sugar, nutrient dense drink, I'd stay away from beets, tomatoes and other sweet veggies/fruits.

"If You Want To Get Better You Have To Push. Exercise!" I think that's a bit too simplified. I know for me, for the first 6 years when my POTS was undiagnosed, I did as much pushing for as long as I could until I couldn't do it any longer. My doctors told me I was crazy and I was making my symptoms up, so I just went on living my life because they made it sound like everyone had these symptoms. I went to college full time and also held a full time sales job and was about as "normal" on the outside as one could be. But then around age 22 is when things got much worse and I had to quit work, school, exercise etc. I'm not lying in bed all day...How many of us are? However if my heart really gets up there (170 is normal for me), I will lay down for 5 minutes and then get back up to resume whatever I was doing. I could not follow one of these programs that include jogging or intensive spinning or rowing, weight training. That's entirely too much. I've tried doing 10-15 minutes on my bike and within a week's time, I'm spending more time in bed because of the crashing that occurs after the exercise. As someone said in this thread, doing a load of laundry is a reason for celebration. I'm thankful my husband is understanding with all of this! Even the most deconditioned person can do laundry and basic house chores. My reason for not doing them is not laziness. Everyone should really talk to their docs about it and listen to their own bodies.

I have one, but not for POTS. I've never had a life threatening situation with POTS..I'm not even sure what they would be?, so I don't even have it listed on my bracelet. From what I've heard, sometimes EMTs don't even read them or too much information can actually be detrimental. Mine is simple, it has my name and Adrenal Insufficiency on the front. Then on the back it says exactly the dose and what meds they are to give me in an emergency. If they don't folow this, then I will die, so it's more important they know that than know I have some weird thing called POTS...

Sue here are some tips I have for you. There are different types of mutations and it's important to get a grasp on this for research.... http://ghr.nlm.nih.g...ssiblemutations Science is still trying to sort through what SNP's are meaningful and what is not meaningful. For right now, SNP's that I pay attention to are those that are classified as missenses, frameshifts, deletions/insertions. I don't pay much attention to synonymous SNP's (unless very rare <1% frequency). Science is now suggestion synonymous mutations might have a purpose, but no one really knows why or how etc. I also don't really pay much attention to very common SNP's either even if they are missenses. For example the COMT mutations while are "neat" to find out, I doubt have much bearing on POTS. I have 2 COMT mutations, but another person on here with HyperPOTS has none. Whenever you start to look into this, the important things to keep in mind that just because you have an allele change does not mean you are doomed or have a problem on a gene. A single allele change does not necessarily mean it is coding for a different amino acid. It is the amino acid change that causes disruption in gene function but even still this is not always clear cut. Also be sure to check out the frequency rates of the genotypes you have for SNP's... If it's greater than 5% I really don't even look at it these days because 5% of the population does not have POTS. Does this make sense? I am highly skeptical of any doc who thinks that any 20%-50% frequency SNPs could possibly be causing major issues with methylation. That's my abbreviated "what to look out for" now that you have your results. Edit: Yes Libby is absolutely correct. Thank you!

Hey Sue! You may want to look at the thread I made about the NET missenses. I listed the RS Id's you will need to search for. However I am willing to share with everyone in PM all of my results on the SLC6A2 gene if you want. I have no idea where people talk about this stuff. There isn't a place that I know of yet. I wanted to start a FB group, but not everyone is on there and I'm starting to back away from making my private FB all about health stuff. It's just too much for me to see and read all the time. I have been putting my obsessive health research on hold because it had started to become unhealthy. I am willing to share genomes directly on 23andme and I will PM anyone my profile on there. Just send an invite that includes health reports (otherwise its pretty useless to share) and let me know you found me through Dinet or have POTS etc. As for finding more about SNP's. You can type in the RS ID's directly into Google, dbSNP, SNPeffects, Exome Variant Server. It took me a good few months to get a good understanding of all of this. SImply having a "bad" allele does not mean it is causing issues. I'm not really sure what you mean by 5% or 30% SNPs are wrong. Every one including healthy individuals have "bad" alleles. That is one thing that I fear is not very well understood right now in the chronic illness community. I honestly don't know how else to explain it though. My love for researching and explaining things endlessly has mostly come to an end... Anyway I just wanted to give you this information for whatever it is worth. Hopefully it can help.

Rich, Generally my BP is always normal. I consider normal 105/75-120/80. My BP will go up a few points when I first stand up, but then it will level out to normal very quickly. On my 1st TTT, I did reach 140/80, but I was also on florinef, DDAVP and a saline IV. On my 2nd TTT, I reached 127/85 and then bounced up and down from there... In my normal every day life though, I have never seen my BP higher than 125/80, but then again I am not taking it by hand very often. I question the accuracy of my automatic BP monitor because I've dropped it a few times...lol As for the delayed hypotension, this happened to me at around the 40 minute mark on my 2nd TTT. I have never fainted from POTS though. If I was forced to stand for hours in a single spot, it probably would eventually happen but as long as I keep walking or moving, my BP is generally normal yet I have very high HR's. 160+ is normal if I am trying to actually do some work around the house. Hope this info helps.

I have lots of floaters, lights and weird flashes that get stuck in my vision. After seeing about 5 eye docs with each of them giving me a different opinion, I gave up on trying to figure it out. .It's been 3 years or more since this all started, so I've just had to get used to it. Hopefully it is nothing serious in your case and I def think you should see an ophthamologist. They will dilate your eyes and give them a full exam. I'm warning you that exam was pretty intense for me...I was white knuckling the armrest and it sent me into an NE rush every single time. HA!

Oh my...I am sooo sorry you had to go through this.

I changed the one yes answer to include secondary AI. I didn't mean to leave that out. So HC was not good for either of you with secondary? That is very interesting! I find having AI with POTS makes things a bit more complicated not only with treatment but also with docs. Mine are afraid to do anything because the adrenal stuff scares the heck out of them...I tell them though I am quite stable on my HC dose and don't even think about it these days. I did gain a bit of weight over the past 2-3 years, but I think it was probably a good thing. At diagnosis I was a size 0 and felt like I was dying. I am now a size 6 and feel about as good as a person can with POTS.

Woohoo! Congrats!

I have always had motion sickness, but it really is not an issue for me in my daily life. Whenever I go on long car trips, boats or anything like that, I take meclizine and I'm ok. My husband has the balance/dizziness issues and it's really awful for him.

Sue, The original twin gene mutation on NET was done back in '99-'00. Once they found the twins, they started to do more research on this phenomenon. Understand that not everyone in the family even had POTS who had the gene mutation. I really wish they would have done more testing in those people. Seems like they found this huge piece of information and then didn't do enough follow up. Perhaps they did but it never made it into a research paper though. The "new" epigenetic study is newly published, but I'm not sure if the info is really new either. There is a reference to a dbSNP ibuild that is 7 years old, so who really knows... The theory behind it is different than the original twin studies though. It suggests that you can have low NET function without an actual gene mutation. I'd love to see this become part of a standard POTS workup, kind of like how it's the norm to have your standing NE levels checked. I agree with you that I wish things would have progressed a bit more in 12-13 years. That's as long as I've had POTS for...yikes! I made a thread about finding a mutation on my NET gene, but it is different than the one associated with the twins. Apparently none of the researchers/dotors at Vanderbilt are interested in it because I never heard back from any of them. Really disappointing because I have a cardiologist appointment next week and was hoping to bring in some more information.

"This is what chronic illness looks like" I really like this one!

Arizona girl, Definitely take a look and do more research into the MTHFR mutation. I'm heterozygous for that one. There is an active form of folate you may want to consider taking, but of course ask your doctor first.

Oh wow if it is growing, then yes that is very concerning. I hope you find some answers!

Thank you Rama for all of these studies. I had seen a lot of these, but did not bookmark them at the time! From what I've been reading, you are right that different parts of the body can be affected more by decreased NET function. The heart is more dependent upon NET clearing out NE than say the vascular system. Perhaps that explains why some of us don't have high BP with HyperPOTS and maybe some of us do for those paradoxical reasons you have mentioned. It seems so darn complex. http://circep.ahajou...nt/1/2/103.full "In the heart, approximately 80% to 90% of released norepinephrine is recaptured into sympathetic nerves, making the heart more sensitive than all other organs to impairments of transmitter reuptake." http://hyper.ahajour...t/48/1/120.full "One possible explanation for the discrepant sympathetic response between organs is an anatomic difference in adrenergic synapses. In the heart, pre- and postsynaptic membranes are located particularly close to each other.18 This anatomic feature makes the heart more dependent on NET for removal of norepinephrine from the synaptic cleft. Indeed, a larger proportion of the released norepinephrine is taken up through NET in the heart compared with other organs.19" I hope mine isn't genetic, but at least I'd have some answers! Sadly I would be rejoiced to know and I think my family would be interested too. I'd bet money on the fact that my dad has some form of POTS too.