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What I get are sharp hot pains like lightning that flashes from my low back up the sides of my rib cage, then circles under my arms around to the front of my sternum. Almost feels like that pain you get when you bang your elbow and hit your funny bone. It's definitely hot, sharp and acute. It lasts for about 15 minutes to half an hour then fades down into a dull pain that makes me sensitive to touch.

I wanted to share a huge milestone with everyone on this forum. In 2009 I got sick with dizziness, light-headedness, fatigue, brain fog--you name it--and couldn’t figure out what was wrong with me. After a few years, I began to suspect I had POTS and discovered this forum, which helped me eventually get a diagnosis. I don’t think I’m exaggerating when I say that the information on this website practically saved my life. Aside from the advice about symptoms and treatments for this disease, people here reminded me that I wasn’t alone--even though I felt VERY alone in almost every other way. I’d had to quit my job and had gone from being very active to spending most of my time on the couch by myself. I did a lot of reading at this time--especially mysteries since they kept my attention despite my brain fog--and I realized that as a sick person with a poorly understood illness, I was like a detective every day. I was searching for answers (often on DINET) to my own medical mystery! That’s when the idea came to me for a mystery where someone is trying to find answers to their own illness while also solving a murder mystery. I don’t know how many years ago that thought occurred to me, but after many highs and lows with POTS and Lyme disease, I was actually able to write the book I’d been thinking about for years. Not only that, after a whole lot of revision, I found a publisher who was interested in it. Now, I can finally say that my book is coming out this week! As much as I read, I don’t often encounter main characters with illnesses, and when I do, they tend to jump out of their hospital bed to save the day and don’t really reflect my experience. My hope is that people with chronic illness will read it and see a bit of their own experiences reflected in my main character. When I was at my lowest--sick, isolated, doubting myself, and feeling worthless--this forum reminded me that I wasn’t alone and that there was hope to get better. I wanted to thank the awesome people here for that and share how you helped me find a path forward to some place better. P.S. I hope this post isn’t too self-promotional. I’m happy to edit if so. Or, if people are curious and I'm allowed to share the name of my book, I’m happy to do that.

yes the 15/15 rule 15 carbs (simple sugar) and wait 15 minutes. then back up with a few carbs (i do 8g with a protein) so for me this will keep my blood sugar even an stable and i will not end up with a overcorrection. Of course you could just eat a meal as well. I will have to look for the sweet potato chips i like trying new foods. I just bought some cauliflower crackers, has a bit of a funky taste to them.

@MikeO That's a really great method to avoid drawing unwanted attention, it probably gets interesting depending on what aisle you're in at the time 😄 I'm really too stubborn to just sit down whenever I should, but I always catch it in time and make it to the car, and thankfully have not fainted for it (the couple times that's happened in the past trained me pretty quickly on how to sense it coming on in advance). I know it's important to sit but I have to credit the stubbornness with both keeping me going through the dysautonomia and through the times when I'm toeing that fine line between my body permitting me to stay on my feet a couple mins longer and running the risk of it suddenly overriding my will and removing the option. I'm fortunate that the presyncope gives me enough warning and that I don't have the fainting as bad as other folks here have reported. I can sense it and can also sorta 'tough it out' and recover enough in the moment to delay needing to take a seat right then. But the cost of that is always the hypoperfusion episode that follows so I've gotten a lot better about sitting sooner. Haven't had a TTT but my doc has done the poor mans tilt on me a couple times, during the worst of my condition it was POTS, but that's been upgraded to just dysautonomia. And that's like the rule of thumb with hypoglycemia right? Straight-up sugar asap, and then after a few minutes pass you should throw down some kinda carb and protein to follow it up? Man I used to love me some saltines (when you've got GI issues it's really the little things when it comes to food lol) but ever since the dysautonomia symptoms worsened I can't seem to tolerate any kind of crackers or pretzels (the number of times I proverbially shot myself in the foot early on trying to correct an episode with the wrong carbs only to immediately cause myself another episode within the hour 💀) Sweet potato chips became my new go-to rescue carb, they're an acquired taste but I think they came up low-GI on Foodstruct so that's what I went with.

This is the most important can't count the number of times i have had to sit down right where i am standing even at the grocery store (sit on the floor and pretend i am looking at stuff of the bottom of the rack) @Pistolknows this one. Like you i am not exactly sure why i get stuck in a rut at times but i found that taking a bolus of fluids does help and to keep moving and not stand in one place too long and not use the recliner helps. my goto to correct low blood sugar is plain sugar water (4 cubes) and then back it up with some saltines and a little cheese or sausage. Have you had a tilt table test yet?

Nah, there's no cause for concern over confusion here.. this is a very sure conversation about grapefruit seed extract. Throughout the thread, the incredibly well-read Issie refers to GSE which is the name of a very popular grapefruit seed extract product, and also refers to multiple studies on grapefruit seed extract. The folks on this forum know their stuff, no need to doubt whether they know what they're discussing

@MarianRhiannon I have had HPOTS for 15 years and have been on Diltiazem ( type of cardizem ) for ten years. Out of all the drugs I tried it works best for me. I am on 180 mg daily. I am not sure if it would work for me alone but I take it a long with a beta blocker, Carvelidol.

@erinlia If standing causes low BP it is called orthostatic hypotension, also considered an autonomic dysfunction. Neuro-cardiogenic syncope ( also called vaso-vagal syncope ) can cause this. I have HPOTS and NCS. With NCS my HR ( during TTT ) goes up briefly and then plummets, a long with the BP, causing syncope. POTS, on the other hand, causes an increase in HR of at least 30 BPM ( I think its more for kids ) WITHOUT a significant drop in BP within ten minutes of standing, and the increase has to be sustained. What is most effective in all of these scenarios are the usual self-help treatments like increasing fluid and salt intake and wearing compression garments ( but this is almost impossible with kids ). I would like to add that the fatigue you mentioned your daughter experiences could be caused by her body constantly trying to provide adequate blood flow to the brain if her BP drops like that often. Moderate exercise regularly and avoiding standing for long periods of time has helped my daughter.

I used skin barrier cream under the electrodes if I have to leave them on long. And use hydrocortisone cream after once I break out.

They had me slather the skin underneath the pads with steroid cream. It helped. I got really sensitive to the hypoallergenic pads over that long month I wore the monitor.

Ok, interesting. I would love it if she was not developing POTS. Does standing never cause low blood pressure with POTS?

It cracks me up how many times I land on your posts Mike, it's like wandering around the dysautonomia woods and finding all the trees you've etched into, like we're on the same dang journey 😂 I feel like I've also more-or-less figured out how to recover from those numbers, but I don't have it down to a science, it's more like I'll recognize the presyncope, realize I feel like death, take my bp with the wrist cuff and then I get back up on my feet and fight through it with maple syrup, salt water and snacks. I'm imagining there's something I'm not doing enough of to prevent it, and probably something better I could be doing to get out of it if it does happen, but I haven't figured out what 😮‍💨

It’s now nine months since I found out that I probably have OCHOS, and I’m still waiting for my Doppler ultrasound test date. I have had to put my immune treatments on hold so they won’t interfere with the test. My LDN prescription is sitting at the pharmacy when it could be helping me. The delay in the scheduling is because my specialist has to be present at the test, even though he knows less about it than I do and doesn’t even normally do NASA lean tests himself. I am really tempted to tell him to stick it and ask for my money back (I know that’s not possible, but he’s wasted so many $300 appointments with his procrastinating). Argh!

I’m ashamed of myself for not knowing until recently that Sir Roger Bannister (of the four-minue mile) was a pioneering autonomic specialist in London. His obituary My mum and dad were living in London when this article was written, and although my mum worked as an agency nurse, not in the NHS, it gives me a little flutter to think of it. “An Assessment of Various Methods of Treatment of Orthostatic Hypotension” Interesting to note that the treatments are still familar to us now, especially the albumin infusion (!), and that they were able to measure blood volume. (The case studies are a little sad to read, as some of the patients were very ill, although some improve as well.)

I know this was a long time ago but wanted you to know that I also am severely allergic to those leads too. But if you wash your skin immediately after with alcohol pads really well it will stop the after effects. At least it helps me.

I was diagnosed several years ago with supraventricular tachycardia and even wound up having a cardiac ablation because of it. I was put on Cardizem for that. It's been helpful. I was recently also diagnosed with POTS, which apparently I've had for decades and no one caught it because I never actually fainted. My doctor wants to keep me on Cardizem because the tachycardia can be quite severe. I'm only on 30 mg twice a day.

@erinlia Looks like her BP is dropping, which is not POTS. Many teenage girls seem to have this problem. Does she have a pediatrician she can see, or a PCP? Also - please remind her that drinking is very important. My daughter at that age ( she is 19 now ) passed out a few times but she had extreme tachycardia during those times. By drinking a lot all day long she has been able to avoid episodes but I have to remind her sometimes.

I did an at home nasa lean test with my daughter today because I've been wondering if she may have a lowish level of POTS. laying down her numbers were 110/ 61, heart rate 62. and 123/62 h.r. 60. Then standing for ten mins these were her numbers: 119/63 71 91/78 77 98/52 93 114/69 85 89/70 46 109/70 88 at this point she was pale and sweating and a little nauseous and unwilling to stand any longer. What do you think of these numbers? i'm concerned about constant fatigue she complains about.

About a year ago, DINET had the opportunity to co-fund a research project being done by Dr. Svetlana Blitshteyn related to sexual dysfunction and POTS. Some of you may have even participated in the study or the initial questionnaires. The study has been completed and is now published. Sincere thanks to all of you who responded to the questionnaire or took an interest in the study. It is a piece of research that, in my opinion, deserves further focus. Here is the link to the full research - https://www.mdpi.com/2077-0383/13/8/2274 There are so many worthwhile studies related to POTS and other forms of dysautonomia. This particular study was so important because sexual dysfunction is a symptom that is not discussed but is certainly one that affects mental health, family relationships as well as physical health. It is another part of life that this disorder impacts and it needs to be included in diagnostic evaluation and treatment going forward. We hope to be able to participate in more studies like this one and we hope you agree that it is worthwhile way for DINET to continue to support the dysautonomia community. As always, we love hearing your thoughts.

@RecipeForDisaster, that sounds like an excellent idea. People would be queueing around the block!

Article about using wrinkly fingers as an autonomic test: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2892617/ The authors just call it skin wrinkling, so there must not be an obscure medical name for it. Funnily enough, in this test the fingers of subjects with autonomic function failed to wrinkle after immersion in warm water. Healthy subjects’ fingers got very wrinkly. I am sure there are posts here about the opposite – fingers going wrinkly without being immersed in water. It must be dysfunctional in both directions.

I wonder whether one of the researchers on QI has a connection with dysautonomia. In the “Quizmas” episode, Sandi Toksvig poses a question about an old dialect word, quobbles. It turns out to refer to the pruney wrinkles you get on your fingertips when you soak them in water, but she goes on to mention the autonomic nervous system, and how quobbles may be used in diagnosing autonomic dysfunction. Not something many doctors know! (I’m sure our specialists know it.) Does anyone know the medical term for pruney fingers? It was also featured on Operation Ouch, but I don’t remember them giving a medical term for it.

Sorry for the confusion - I did IVIG for a year and a half, and then the pharmacy caused me to miss 2 infusions from January to now. So not quite as bad as 2 years (but bad enough, as my infusion reactions were worse than ever after the gap). Wouldn’t that be a great legacy? I’d open a one stop shopping clinic where you could leave with a diagnosis and treatment plan, equipment, education, and meds. Imagine that?!

@RecipeForDisaster, I’m sorry that your treatment was delayed by an error. Two years is a long time to wait. I am slightly ashamed of myself now for complaining about six months for hydroxychloroquine (Plaquenil). I get a lottery ticket now and then, with the grand plan of funding certain autonomic research or equipment. If it’s equipment, I’ll get a brass plaque on it with my name. Or maybe a dedication to DINET 🙂