Chaos

If you figure it out, I certainly hope you will let me know because I've been trying to find a pattern or precipitating factor for years. Actually, when I first became ill, my symptoms seemed to be more random and less related to activity. Now I can definitely tie over-exertion to my PEM symptoms the next day. One of those PEM symptoms is the shortness of breath/air hunger. While I have been diagnosed with exercise induced asthma, my pulmonary function tests are always good....until I exercise. Then they don't look as good. I have SOB without tachy frequently. I was getting saline IV's regularly over the summer and while they helped tremendously, the days that I was SOB, I was still SOB when I was leaving the facility after getting the saline so not sure that the blood volume accounts for it. I still think there is something metabolic that gets switched "off" and there is some imbalance of O2/CO2 that occurs in the brain that accounts for the symptoms. For me anyway, it doesn't feel like the problem is really a lung issue. Feels like it's more a central nervous system issue or perhaps a mitochondrial issue. From the 2 day CPET I did, I know I get plenty of O2 into my blood, but it's not getting utilized by the muscles so I'm just exhaling it all back out again. Theories I've heard to explain this include one that says for some reason we have lost the ability to uncouple the O2 from the hemaglobin and allow it to enter into the cell. Thus, even though your O2 sats are fine, the levels getting into the cells aren't. Regardless of "why" it occurs , I certainly share your frustration!

Tried acupuncture before I was ill and had a terrible reaction to it so have been afraid to try it again. However, was referred by an integrative med doc to an acupuncture doc locally who specializes in treating neurological cases. Took me over a year to get up the nerve to make an appt. They do specialized "scalp acupuncture" along with regular acupuncture. I've only had about 5 sessions so too early to say for sure, but I did have a cold about 3 weeks ago and although it aggravated my POTS symptoms some while I was ill, once the cold was over, I was pretty much back to my baseline (which isn't very good these days). However, I am really excited because ever since POTS onset, when I've gotten any kind of virus, it will take me down for weeks, if not months, after the virus is gone. So, the fact that I was back to my baseline, or maybe even a little better has me optimistic that this might be helping. I'm also on high doses of anti-virals from my immunologist though so that may also be a factor. I would ask around and get a lot of strong recommendations about any alternative medicine provider before you see one whichever way you decide to go. Good Luck!

I've always had people comment on my ability to do freaky things with my body, so I've always known I was hypermobile. I have only realized in the last couple years that my sisters (who are significantly older than I am) also have hypermobility issues, but no, EDS wasn't obvious in my family. When I had multiple complicated pregnancies and premature deliveries, I did some research and came up with EDS as a possible cause- 20 years ago. My docs back then totally dismissed it as a possibility. There are various types of EDS though and not all of them have hypermobility as an identifying issue. My daughter has been diagnosed with joint hypermobility/connective tissue disorder, although to look at her you would never think of her as a flexible person. Yet her joints themselves are unstable and her tissue definitely heals abnormally when she scars. Not trying to force the issue that you have a connective tissue disorder. That may not be "it" at all, just trying to give you avenues to explore, as the slow healing and lidocaine issue have come up in my dealings with people who have EDS. It also has come up in someone I know who has mitochondrial disease/dysfunction. But then. the geneticist who diagnosed her mito was also theorizing that maybe EDS 3 might be mitochondrial disease and that's why they can't find a genetic marker for it.......but that's another conversation. Yes, "Chaos" came from having 4 kids in 6 years, working 4 jobs (physical therapist, certified childbirth educator, taught sign language at the university, taught yoga), yet still considered myself a "stay at home mom" ( only worked evenings and weekends) so I volunteered in all the kids' classes at school etc. Pretty much never sat down and slept very little. Loved my life. That was before I got sick. Once I became sick Chaos still seemed appropriate but just applied to my body rather than my lifestyle.

Besides EDS, Marfan's syndrome is a similar condition that you might check out. There are many hereditary connective tissue disorders which might account for the slow healing. Funny that you have "Irish Twins". My mother-in-law had 3 sets of "Irish twins" amongst her 10 kids. That will keep you busy.

Are they still selling the test? If you can get the raw data there are several sites you can load the raw data into that will give you some feedback on various mutations, but it's not a complete analysis- at least at the sites I'm aware of. For example Genetic Genie will give you feedback on the methylation mutations etc. There are several other sites that will do similar things.

I'm not sure if it was the CoQ 10 or fish oil but I've definitely noticed a problem with it affecting my BP and making it low even with the midodrine. I've stopped both and am doing better without them. I know they're both supposed to be really good for you, but I think like everything else about these diseases we have, we are all so individual. You just have to work with what's going on at the time and go with what's working and drop what isn't. I can't find it right this minute, but there is a huge chart that explains where a lot of these various supplements get processed in the various biochemical pathways in the body. So, theoretically at least, depending on what mutations someone has and what else is going on in their body, they may or may not be able to process or utilize a given supplement as they need to. If you put in more of something than they can use, it may very well shift them into another biochemical pathway that isn't good. Sounds like you're on the right track Rachel. I'll try to remember to look for the chart and link to it later.

Hi and Welcome. Sounds like an interesting path you've traveled to find us. Sorry you've had a cause to be here. As far as not having an "official" TTT, while some docs feel they are the "gold standard", I've certainly read other opinions where they feel that the poorman's TTT is actually more reliable and relevant to real life and that the TTT produces too many false positives. Sounds like your providers feel that you've "proven" yourself enough and you don't need the "joy" of a TTT. That's not a bad thing. They're not fun. Since dysautonomia is considered to be a symptom rather than a disease itself, the more interesting thing is going to be figuring out what is causing the dysautonomia. Have you looked in Ehler's Danlos at all? I know a lot of them have issues with non-healing or slow healing wounds. It can also cause issues with not dealing well with lidocaine (and other 'caine' meds), although usually it's more that it doesn't work well rather than it causing you to pass out. That might be more related to the dysautonomia? Just guessing here. Your symptoms which lasted for days after the ER, sound similar to my experiences after my TTTs and other episodes where I've had profound hypotensive episodes. Still don't quite understand why the symptoms last for so long and are so severe. Almost wonder if there isn't some hypoxia to the brain that occurs when, in my case for example, my BP was in the 30/20 range (or it disappeared completely) for some time. Maybe the extreme fatigue etc afterwards is the body's way of trying to protect itself as it attempts to repair the damage? Total hypothesis on my part here, based on what I've read and trying to integrate it with what I've experienced in my own body. Glad you've decided to join in and become an active member of the forum.

As Corina said, we are all different so we'll probably all have different experiences to report. Personally on the nadalol, my resting HR typically runs around 63. If I've overdone things the day before, it'll drop into the low 50's the next day. If I'm coming down with a virus it'll be in the 70's. As far as stairs, when I haul a load of laundry up, on a good day it'll stay between 100-110. On a bad day, even with the nadalol it'll still go up to 120-160. On both the propanalol and the nadalol, I've found that there was just a matter of fine tuning the med to get to a level where it felt like it controlled the excess HR most of the time, but didn't keep it so controlled that when I exercised I didn't get an appropriate rise in HR. So for example, sometimes it was a matter of changing the dose slightly or even changing when I took the dose so that I could exercise and get an adequate HR response to the cardiac exercise. All that fine tuning of the meds was done by my doc(s) when I would ask him or report my symptoms. All my POTS docs seemed to think I should get a "normal" cardiac work out when I exercised. Don't have any experience with Klonipin so don't have any insight into what you're experiencing with that, although I have read several members' accounts on here of trying to get off it and some of them had quite a time of it.

Same here....if it wasn't for the internet and this site in particular, I would never have been diagnosed when I got sick in 2009. I am so grateful for the fact that the internet is available and is changing medicine in this way. Have you looked into ME/CFS as well? Here is the International Consensus Criteria link http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract There is a lot of overlap between POTS and ME/CFS. You might check this out and see if you fit the criteria for this as well. If so, then you might want to check into seeing a good immunologist to follow up on some immune testing.

Hi. Welcome to the forum. Sorry you've had a reason to find us. My guess would be like others have said. The beta blocker would be the first thing to suspect as they can be notorious for causing fatigue, especially at higher doses. While the chiari malformation causes headaches etc, I would think it would be unlikely to have started causing you that kind of fatigue suddenly. Probably you've had that for a long time, so it seems less likely to be the culprit in this situation. Perhaps being a "busy mom of 3, owning your own business" with POTS is part of the issue as well. POTS in and of itself can be a very fatiguing illness. Having 3 kids is also extremely tiring (I have 4 so I can relate). Owning your own business I can only imagine adds a whole extra layer of stress and fatigue on there. Add a beta blocker on top and it looks like a prescription for overwhelming fatigue to me. I'm so sorry you're having to deal with this in the prime of your life when you want to be doing all that you can. I think POTS seems to hit a lot of people who are similar in that they are/were very active, highly motivated, high achieving folks who suddenly got slammed with it. Hopefully, this will just be a temporary setback. Is there is any way you can dial back on some of your activities so you can take care of yourself now in the hopes that things will calm down and reset? Maybe allow you to find the energy to start a progressive exercise program etc? It might pay off in the long run if you can. Best wishes!

I remember having a similar experience when I was diagnosed. On the one hand I was so excited to finally have a "real" diagnosis and know what I was dealing with. On the other, nothing really changed. My local docs still didn't know what to do and none of the meds changed much and nothing seemed to help a lot. As far as the EDS HM and the JHS... since there is no definitive genetic test yet for EDS HM the jury is still out as to whether the two are the same or not. From what I've read, it seems a lot of docs are saying the two conditions look the same and act the same, therefore they are the same. Yet other docs are saying until that can be verified by a test, they aren't willing to accept that as valid. But for the most part, the two conditions seem to be remarkably similar in symptom presentation. Studies have confirmed the association between dysautonomia and JHS. A recent study just did the same for EDS HM and dysautonomia. Not sure how medicine works in the UK, but here in the US, I've found that if I don't manage things myself, everything just falls thru the cracks. I tend to be very proactive about making appts to keep local docs/GP etc informed about what the specialists have discovered after I've seen them. I also get copies of all my medical records and provide them to my local docs. When the specialists order labs or tests for me that I have done locally, I make sure I send them copies of the results as otherwise they frequently don't get them. Maybe it's just where I live, but if I wasn't constantly nudging things along, I'd still be sitting here with no diagnosis and thinking I was imagining how bad things were. Hang in there!

I've been on nadalol for a year. I have the 20 mg tabs but am prescribed to take 10 mg. Sometimes even that seems like too much so I break off parts of the half tablet and take half to 3/4 of the half tab. It's been a good med for me as it's got an extended release action (whereas the propanalol I was on before was short acting) but I do have to play with the dose a little bit to keep my BP from tanking too much. Good luck

So nice to have something positive happening for Tyler for once! Yay!!!!

Have had this happen where it's felt "thready" but also have had it happen where literally a pulse couldn't be felt for quite awhile. When I had an episode in cardiac rehab one time, I remember the nurse telling the doctor that he had hadn't been able to feel my pulse the whole time they were getting me back to a room so he thought I had been "pretty hypotensive". Did you have other symptoms?

I have gotten them and they made a big difference. I was getting them 3 x a week however. For me, the benefits lasted 24-36 hours. If you get a port, I would think you would be getting them daily to make it worthwhile. There is a significant infection risk with a port so my docs have discouraged me from getting one, but I also have ok veins for the most part. You would have to weigh the various risks and benefits in your particular case. There have been some other discussions on this topic fairly recently on here. I know one person has a port and does daily infusions and it sounded like it totally changed her life around. Hopefully she'll jump in here. You can also search the site perhaps and find them.

I think they say that's one of the things that happens with hypothermia, don't they? That people feel like they are warm and start shedding clothes even tho they are literally freezing to death out in a snowstorm? They probably have things they can do to help warm you up in the ER, but not sure how long the effects would last if they don't do something to address the underlying cause of the hypothermia. Since it's been going on for several weeks, doesn't sound like something where they can just warm you up and then your body will take over like it should. Would be nice if that happened though, wouldn't it? Hope it resolves soon!

I've heard various theories about the chest pain varying from it being related to diastolic dysfunction and hyperdynamic ejection fractions to it being related to changes in the microvascular circulation in the heart to it being related to costochondritis. Haven't heard any good explanation for the weight loss. I think the best doc to see is one who has experience with POTS/dysautonomia. Some of us see a neuro and some see a cardio for that reason. I see a local cardio who knows a little bit about it (now) but the specialist I travel to see is a neuro.

I got the fitbit because one of my docs wanted his patients to get them so he could track their activity levels against medication changes, track "crashes" etc.

Recently I've been finding my BP can be fairly dramatically different between my right and left arms at the same time. Seems to correlate with when I'm most symptomatic as well. Might be 130/90 on one side and 92/78 on the other. Then on other days, it's exactly the same or very close to the same in both arms.

When I first became ill, I lost about 20 lbs without trying (and I wasn't overweight to begin with). I remember looking at my legs and thinking they looked like some of my cancer patients' with the muscle wasting that was going on. As far as sweating, I have patchy reduction in sweating, so some places I sweat less (as demonstrated with my Qsart test) but others I actually seem to sweat more than I ever did before. Have you done the poorman's TTT yourself at home on several occasions and recorded the results? Lie down for at least 30 minutes (or better yet, do it first thing in the morning when you awaken). Take your HR/BP. Then stand at the edge of your bed for 10 minutes without moving. Try to minimize all the extraneous movements we tend to do naturally to compensate like wiggling toes, shifting your weight around, etc. Take your HR/BP at 1 min, 3 min, 5 minute, 8 min, 10 minute marks. Record these on several different days and see what you find. Since a lot of us tend to be most symptomatic in the morning, that's a good time to do the test. If you find you tend to be more symptomatic at other times, then test during those times. Just make sure you have at least 15-30 minutes of lying down before you do the standing up part. If you take this record in with the article it may help when you try to convince a doc that you have this condition. At least it may give them enough evidence to order a formal TTT if for no other reason than to prove you wrong. I've had that experience myself. Imagine the doc's surprise when I failed the TTT spectacularly. He came in after the test looking totally shocked and actually referred me out to a specialty center for further autonomic testing after that. If your GP just won't work with you, you may have to find another doc who will. Either another GP or another specialist who is willing to be more open minded. Most of us have had to go thru multiple docs to find one that will work with us. It's the old "you have to kiss a lot of frogs to find a prince" kind of thing. If they aren't willing to help you, then don't waste your time and money with them. Move on to others who will. It's hard when you live in a smaller area. Even in a larger town where I live, I've had no success finding anyone who will really work with me so I travel out of state to see the 2 docs that are helping me now. It was terrifying to contemplate initially but I am so grateful now that I did it. Your HR numbers are pretty similar to mine on my better days. On my worse days (without meds) my HR would be up in the 140-150 range.

My doc has suggested I try D-Ribose (a supplement) for energy. He says some of his patients have had success with it. I haven't tried it yet but it's something you could research and ask your doc about. It's over the counter.

Sorry to hear about your difficulties. Definitely best to check with your doc about what to take given your many bad reactions to meds. Personally when I took this last year with pneumonia, I had better BP readings than I usually have even on midodrine. I've read some things suggesting it might be helpful for SOME POTS patients due to various mechanisms it works on, but when you know you have as many issues as you have, much safer to check with your doc first.

http://circ.ahajournals.org/content/127/23/2336.full Hi! Welcome to the forum, but sorry you have reason to be here. Yes, your symptoms sound very familiar. The above link is to a recent article that might be helpful for you to take to your physician. It specifically addresses the whole "anxiety" aspect of POTS. It also notes how many people develop it after childbirth and surgery. (Lucky you, you had both triggers at once!) If you have a helpful physician, sometimes bringing in articles like this from reputable medical journals will give them a starting point from which to begin diagnosis or at least referring you to the appropriate site to get a diagnosis. One thing that you might hear is "that is a rare diagnosis so why do you think you have it?". Not so true. What is true is that it is rarely diagnosed...largely because docs don't know about it. So don't let them intimidate you if they try that tactic. No one knows your body as well as you do. You've lived with it for 38 years. You know how it has felt and behaved in the past, and you know how it's working (or not) now. Be persistent in your search for answers. Unfortunately a lot of docs, when they don't have the answer, will try various tactics to make you feel like it's your "fault" i.e. it's something you're making up, or you're attention seeking, or you're depressed etc etc. I have a brother who is a doc and has told me that this was how he was trained in med school many years ago. The doc "is not allowed to not have an answer, so if you don't know, blame the patient." One would hope that this mentality would be out of medical schools by now, but unfortunately, I don't think it is yet. It's hard not to get discouraged when you've seen a lot of docs and not gotten any answers. The trick is finding the RIGHT doc who can give you the answers you need. All the wrong docs don't count- other than for ruling out the things you don't have. After seeing many, many docs and being told very similar things to what you've heard, I was totally amazed when I finally saw the one who said, "well you sound pretty average for what I see in my practice". That's when I knew I was in the right place. Good luck! Hopefully you will find help and encouragement here as well.

The fitbit itself doesn't but they have some way you can sync a HR monitor to it so you can track HR with it. The FT4 doesn't wync with it tho. And the FT4 definitely doesn't really work well with dress clothes for work probably. Guess it depends on what type of work you do. With my former job it would have worked fine, but in a more formal office setting, probably not. Good luck.

It looks like the polar loop doesn't monitor your HR itself but that you have to buy the H6 or H7 to go along with it? At least that's how I'm reading this site. http://www.amazon.com/Polar-90047656-Loop-Activity-Tracker/dp/B00FEQ6TVO/ref=sr_1_4?s=sporting-goods&ie=UTF8&qid=1388552203&sr=1-4 I personally have a polar FT4 which I have been wearing pretty much continuously when out of bed since I did my 2 day CPET testing in April and was told to stay below my anaerobic threshold at all times. Had to replace the battery in Sept. but other than that, it's been doing well overall. It was inconsistent while swimming this summer but otherwise, it's been pretty glitch free. Just got a Fitbit for Christmas but the two don't sync so not a good option if you want that to happen.