Chaos

I like reading your updates. Always good to hear from you and know how you're doing. Seems that your mito stuff isn't holding you back much.??

Gemma- Here is a link to the Canadian Consensus Criteria for diagnosing ME/CFS. These seem to be the preferred criteria at the moment as to how it should be identified. http://www.cfids-cab.org/MESA/ccpccd.pdf On page 11 of this document you'll see the chart that gives you the criteria. If in fact you meet the criteria then you probably will want to start doing some more research on the disease and perhaps look into seeing an ME/CFS specialist. While the test that you had run is very common, finding someone who understands the significance of it as it relates to ME/CFS and interpreting it, let alone having a second day test run is almost impossible unless you go where they know what they're doing. I think there is definitely a sub-group of ME/CFS patients (and POTS patients) who have shortness of breath and air hunger as a symptom. I think that's why Dr. Stewart and Dr. Newton are both looking so much at O2 and CO2 levels, hypocapnia and hypercapnia etc. It's tied in somehow for some of us. It relates to hyperventilation in some of us too, but not because we're hyperventilating in response to anxiety etc, but because of some physiological trigger that's causing it to happen. Here is another link to a video that might also be helpful for you to watch. http://www.youtube.com/watch?v=q_cnva7zyKM#t=2022 While the 2 day testing is to some degree still at the research stage, it's well enough established that it's being accepted for disability and SSDI claims. I had the two day test because I needed to see for myself, on paper, that what I was experiencing in my body with exercise was really happening physiologically. Being a PT, what was happening contradicted absolutely everything I had learned and observed in 28+ years as a therapist. Unless I saw it on paper there was no way I was going to be able to accept what my body was telling me because it just seemed way too crazy. It also helped tremendously to have it documented for my disability claim.

When I'm really bad, my exercise consists of making sure I don't stay in bed all day. It's making sure I get up and move about the house a bit, sit in a chair, take a shower and get dressed. Those are all very energy demanding when you're ill. As long as I'm doing those things I'm not going to be "deconditioned" to a point of it causing me symptoms. After the many years of being ill, I've finally come to realize I actually DO have to listen to my body and try to respect what it's trying to tell me. I ignored it for the first many years of illness and tried to keep up the exercise despite being very symptomatic doing so. I think I made myself much worse doing that.

The other night I was setting up the coffee maker for my M-I-L who lives with us. Instead of pouring the water into the reservoir, I stood there talking to my daughter and poured it into the place where the filter and grounds usually go. Luckily I hadn't put anything there yet so I was just pouring water all over the coffee maker and counter. Talk about getting one of "those looks" from your kids.

Katybug- Has your mom been worked up by a cardio to rule out cardiac syncope? Especially in older people that probably should be ruled out if she's having BP drops. Sorry to hijack your thread Blue! I've enjoyed the laughs from the experiences of everyone else. I can SO relate to all of these! It's painful but if you can't laugh at it....it's just too sad to contemplate.

I had my hyst because of a large ovarian mass and menorrhagia so I kept one ovary. (Also did a supra-cervical hyst. because I think it's really important to keep as much structural integrity in the pelvic floor as possible. That's extra important for anyone with EDS too- IMHO. Incontinence and other "female problems" become an even bigger problem frequently after hysterectomies because of the disruption of the pelvic floor in a normal hyst.) Corina- Yes, I definitely wonder if anesthesia triggered my POTS. My neuro thinks so. I've only had anesthesia one time since the hyst and that also triggered a massive 10 month relapse and what they now say is ME/CFS onset. However, I also wonder what part hormones played in the whole episode because I was actually not bad the first day post op. I was up and moving, walking and fine. It was day 2 when everything went to ****. They started me on a hormone patch after one week to try to deal with all the symptoms I was having and while that helped some of my symptoms it almost seemed to aggravate others. The ones it helped were significant enough though that I stayed on it and have been glad I did. Good luck trying to decide BigSky. It's hard. I'm glad on the one hand to have done it because the constant non-stop bleeding was also a huge drain on my system and not without symptoms. However, if I'd known what was to follow, I'd never have done it. Although, given the characteristics and size of the mass (and the fact that my daughter had ovarian cancer the year before), it didn't seem I really had a choice in the matter at the time.

I had this done but it was part of a 2 day cardio pulmonary stress test to identify ME/CFS. One of the things they have identified in that condition is the fact that people aren't able to utilize O2 appropriately in their muscles. They frequently have an O2/CO2 disturbance on these tests. They are still trying to figure out why it happens. It's now been shown consistently to happen at several different facilities in several different studies so they feel that it is reliable data that they are looking at. If you only have 1 test done it will usually come back looking like you are "deconditioned" on the first day. It's on the second day when the really interesting findings show up. Here is a link to the website for one of the groups who has done most of the research in this area. There are a number of video and research articles that you might find interesting at the bottom of the page. http://www.workwellfoundation.org/research-and-latest-news/ Here is a link to some notes from a presentation by Betsy Keller, Professor from Ithica College in NY who has also done research in this area as well as a few other presentations on exercise related problems associated with the condition which these studies have identified. http://phoenixrising.me/archives/24522 In one study published in PT Journal last summer, they were able to correctly identify with 95% accuracy those patients with ME/CFS vs controls by exercise testing. A researcher (Julia Newton) in Newcastle, England has been able to show that these same problems occur in the ME/CFS patients' muscles even when they are removed from the body and "exercised" in a lab setting. She is also showing step-by-step how these problems are tied in to the autonomic nervous system dysfunction that occurs in these patients. Her research is really interesting to follow especially for those of us with POTS/OI/NMH etc.

POTS started right after mine.

So frustrating how it always works that you can't get the tests when you're symptomatic. Sorry! I've been walking around with a lab slip in my purse for 18 months to have some of these tests run. Unfortunately they can only be done M-Th during certain hours. I always seem to react in the evenings and on weekends. Or, when I'm reacting I feel too bad to go to the lab. Or, I've been too brain dead to remember i had a lab slip in my purse for the tests, Or........ Have you tried treating for MCAD even without the testing Alicia? My POTS specialist has done that because of how difficult it is to get the tests to catch the elevated levels.

I remember having a similar experience early on in the disease process. I started crying at an appointment simply out of frustration with everything that was going on and had been going on for months with no help available. I was also having a really hard time breathing just from the effort of trying to get to the appt and walk into the building and my HR had been super high. Of course that immediately got me labeled as both depressed AND anxious. Since I couldn't breathe, I certainly couldn't tell the doc what a total jerk I thought he was. That was however the last appt that I ever went to by myself. Now I always try to take someone else with me so they can be my advocate if I'm not having a good day or am too brain foggy to communicate effectively. As far as treating "anxiety", as others have said, it's personal but for most POTS patients treating the POTS symptoms will likely treat the "anxiety" symptoms. I had been put on anti-anxiety meds early in the process but when I saw a POTS specialist he took me off of them and I felt much better for it. My personal feeling is that people have different ways of "expressing" this syndrome depending on their genetic makeup. For some that expression will be more toward anxiety and emotional symptoms. For others it will be more toward physical symptoms. Either way, we just need to treat the underlying imbalances that are causing the problems. Good luck with your appt. Wed.

Same here. I know I had another stupid moment like this earlier today but the good part is...now I can't remember what it was. LOL We'll just "keep smiling" though Blue!

Potluck- When I was talking to my POTS neuro about this, he was saying that at Mayo when they found the antibodies that they found which are associated with POTS, they found them in 14% of the patients and that was thought to be a HIGH frequency of occurance. Sounds like a lot of the neurologists aren't taking this new study too seriously at this point for the reason you mentioned- the fact that they found the antibodies in 100% of the patients. I'm hoping the bigger study will shed more light on the issue either way. For some reason, I seem to remember reading somewhere that they think about 50% of POTS patients have an autoimmune cause? (How's that for sufficiently vague sources? ) I know my POTS doc says that just because I haven't shown up with the antibodies that Mayo tests for it doesn't mean my situation isn't autoimmune based. He still thinks it likely is, even with the MCAS component involved apparently.

Documented at 36/24 on a TTT at CC and didn't pass out. The cardio said it had to be machine error but the next day they did it again and I went to 42/26 without passing out. Her response was "You REALLY should be passing out with numbers like this!". On my first TTT (locally) they lost my BP totally for quite awhile while I was still aware. I remember the nurse saying she "heard 1 beat at 30 but that was all and you couldn't possibly have still been alert that low." Apparently I could. I've had orthostatic hypotension most of my life so maybe my body has just adjusted over the years? That's my POTS neuro's interpretation anyway.

It's interesting because I was just reading an article yesterday by a local MD who was a certified midwife/herbalist before she went to med school. She said magnesium and butterburr are the two things that have been shown in randomized, placedbo controlled, double-blind scientific studies to go head-to-head as being just as effective as prescription meds for preventing migraines. I know in the ME/CFS community the docs are all talking about how their patients are consistently low in magnesium and even if their serum levels are ok, the amount in the cells is not. However, the way to best address that deficiency seems controversial amongst the various providers. The latest statistic I read said that 50% of POTS patients meet criteria for ME/CFS so a lot of us may have this issue. Sue- it's frustrating always being "the one" with the paradoxical reactions, huh? I know the feeling. I've gotten to where I usually just don't even bother mentioning them anymore to anyone other than my POTS or ME docs because the others just look at you with "that" look.

As to why meds affect you and your son differently, I would suggest two possible theories....one being that you have just enough differences in your genetic makeup that they cause you problems and not him. For example, maybe you have more homozygous mutations in your detox pathways whereas he only has heterozygous mutations there and therefore can handle meds better. The other theory would be that female immune systems are much, much more complicated than males' and somehow that is all coming in to play here. Watching a video by a doc who is researching Gulf War Illness, he was describing how vastly more complicated the female immune system is, mainly due to the fact that in order to sustain a pregnancy the female immune system has to completely change so that the body doesn't attack the fetus as foreign and kill it off. It's really very amazing and complex really but makes it that much more understandable as to why there could be so many more autoimmune problems in females compared to males. And perhaps a third theory...maybe he just hasn't had enough time to be exposed to enough stuff to develop sensitivities yet?

Hi Tammy. Welcome to the forum. Sorry to hear you're having such a rough time of it. It's hard when you are getting conflicting advice from different doctors. Is the doctor in Penn. FL knowledgeable about POTS? Is your cardiologist? I haven't seen Dr Grubb but from what I've been seeing on here, it looks like it's taking over a year for people to work their way up the list at his office- even with pretty severe symptoms. Maybe it's less if they get in with his nurse practioner (or PA?) Beverly K? Hopefully someone in his practice will respond. But that may not be a quick solution for you, unfortunately. You mentioned that you've been diagnosed since 2007. Have you seen any other POTS specialists since then? Or tried other meds? Personally propanolol worked great for me, but I also needed midodrine along with it. Since propanolol drops BP along with HR, I needed the midodrine to raise my BP enough to keep it out of the danger zone. Unfortunately with this, it's mostly trial and error on a personal basis because we're all so different. If you have Mast Cell issues, the conventional wisdom is that beta blockers (like propanolol) aren't a good option for you. However, I have an MCAS diagnosis and absolutely LOVE my beta blocker so it's not across the board that it fits. I was also put on Florinef which caused me a lot of headaches. They did eventually resolve after about 4-6 weeks, but I never felt like the florinef was that helpful so stopped it after about 6 months with my POTS specialist's approval. I also tried clonidine but that dropped my BP way too much and also caused tremendous HAs so that only lasted about 3 days. The most important thing is having a doc that you can work with, who will listen to you and adjust meds based on your symptoms. If you are passing out and hitting your head then it seems like perhaps you're not on the optimal med regimen quite yet. I know my POTS neuro says that med changes need to be done slowly, one at a time and given time to take effect and stabilize as the ANS takes awhile to adjust to anything you do for it. It's probably best to trust your gut on this one and go with whichever doc you felt had the best understanding and experience with POTS and was most willing to work with you based on YOUR symptoms and YOUR situation. While being on the list for Dr. Grubb is great, I'm really worried about you continuing to pass out for the next year or more while you wait if your cardiologist isn't willing to do any more for you than just the propanolol. Best wishes!

AllAboutPeace- Ha ha! Love it. And oh-so-true. On the rare days I make it to the grocery store and the clerk asks the requisite "how are you?" and I smile and say "great!", I feel somewhat smug and powerful and like "hey, faked you out, didn't I". Makes me somehow feel like I still have some control left and that the illness hasn't totally taken over my life. I can still be "great!" if I want to be, even though much of the time I'm not. You put it so well!

Wasn't familiar with Buteyko Method so looked it up. Doesn't appear to be much different from some of the pranayama patterns in yoga from what I could tell. I have done those patterns to experiment with POTS symptoms and it's not helped usually other than being relaxing. Certainly not curative.

http://www.cortjohnson.org/blog/2014/04/27/coping-mecfs-will-always-hard-ways-make-little-easier/ This seemed like a timely article given your discussion blue. I think there is some truth to what she says in the article about choosing who we want at our cocktail party or who and what we want to focus the spotlight on in our life drama. While life can be really miserable at times with these diseases, I can not see how making everyone else around me miserable is going to make my life more satisfying. Making sure that everyone around me knows just how sick I am also doesn't help really. It just feels like I'm getting in a ******** contest to see who has the more icky life. Who cares? Everyone has burdens to bear. Many have it much, much worse than I do. Some have it so much easier. Life's not fair, never has been, never will be. The challenge, as I see it, is to help each other make it thru each day, the best way we can as we all shuffle along doing our best to deal with the ups and downs that life inevitably throws at us. I am so very grateful to all of you who come here and share the ups and downs and can relate to the burdens we share together. It's so nice NOT to have to explain just how bad living with this is here. And makes it easier to live with the rest of the world who just don't get it. Knowing I have a group here I can come back to who understands makes it easier to paste that smile on my face for the rest of the world to see.

My POTS neuro was suggesting trying a low dose of Adderall at my last appt when I was complaining of brain fog and cognitive issues. It seems to be helpful for some patients with these complaints. Has your doc suggested trying that? I use Wellbutrin (bupropion) which affects dopamine/norepi and it definitely helps my POTS symptoms but not sure how much it's helping this cognitive stuff. It's also been shown to be a strong TNF-alpha inhibitor (at least in mice studies). Maybe my symptoms would be worse without it? Not going to stop it to find out as I've done that before and had massive POTS flare.

Glad Tyler came thru the first round relatively well. Sure hope he gets some relief with this. You BOTH deserve awards for being troopers!

Congrats on your new precious baby. So happy to hear that everything went well for both of you. It's been a common sentiment on here that frequently people find that their HR and BP readings don't reflect how they are feeling overall with their other symptoms. I think with Dysautonomia that you can certainly still have a lot of other symptoms even if the HR isn't going up so high. Since you have been on bed rest for so long it will be interesting to see if some of this clears up once you have more time to recover slowly and your body begins to recuperate from all the physiological stress it's been under for the past many months and now the added stress of surgery and anesthesia on top of it all. Hopefully that will be the case and this will all just be a bad memory for you. Would be nice if that could happen so you could get on with your life and raising your children. Please keep us posted as to how you are doing.

lejones- LOL Very good! "I'm not dead yet". Maybe we should get dysautonomia awareness t- shirts with this as a sub-title (although Monty Python might take exception to it I suppose). But I agree totally. Yes, it's benign as in not terminal, but sometimes it feels like a kind of living death. It's certainly more of a half-life (or quarter, or eighth depending on the day) than a "real life".

Very cool! Thanks for posting. Always good to get more recognition out there for POTS//dysautonomia. Had to laugh though that the same doctor says "quality of life is very much affected, even to the point that these people can lose their jobs" but then they end the interview with him saying "it's benign". IDK but somehow I don't think of having my entire life changed and career ended as being "benign".

Like others have said, it's not necessary, nor is it even "common" (statistically at least) for POTS patients to pass out on TTT. By definition, POTS is diagnosed by a 30 BPM increase and/or if your HR goes over 120 at any time during the first 10 minutes of the test. You can have, as many of us do, POTS and NCS (aka NMH) where you have the HR changes and then eventually have a BP drop but even then, many of us, don't pass out. I never have on a TTT or in real life, despite having "no pressure" and documented BPs in the 30's/20s on several TTTs. The other thing to keep in mind, is that most knowledgeable POTS docs say that not only do you need to have the HR changes but you need to have other symptoms for a diagnosis of POTS. The fact that you were having symptoms before your test and during/after your test, along with the HR changes seems to indicate that you met criteria for POTS. Sounds like your doc recognizes this since it sounds like his diagnosis was POTS and he gave you Florinef. There is a lot of cross-over between dysautonomia (POTS/OI/NMH) and other conditions such as Fibro, ME/CFS, IBS, Interstitial Cystitis, Sjogren's, so it's always good to have things checked out if you suspect that you may have them. The more symptoms you can control on the various fronts, the more it may help to keep your POTS symptoms from flaring as well. Glad you found an answer for some of your symptoms, but sorry you are having to experience this. It's not a fun time. Hang in there.