EarthMother

I wonder about that too ... through the wax and wane of symptoms over the years and what appears to be a slow and steady decline over time, what are the triggers that turn the disorder into such a life limiting condition. I use to warn my kids about drinking and drugs ... could our young and stupid years contribute to a metabolic shift? I read somewhere that having an auto accident can shift the autonomic system especially if you are genetically predisposed. What about long term stress? Auto-immune comorbidity? Lots more questions than answers. And I really don't want either of my daughters walking on eggshells wondering what they should or shouldn't do. Ultimately all of us are walking on thin ice, in one form or another. So for now we give ourselves Grace and put on the ice skates as we glide onward in our healing journey.

Deep bow, warm smile. Thank you all for your good thoughts and wonderful resource links. I am versed in so many things on my own healing journey but I never thought twice about EDS as the cause of my POTS because I don't have the classic markers. So I didn't do a lot of reading in that area until more recently. When we saw that each of my now adult children do score high in the classic ways it helped shed light on the origin of our symptoms. Indeed it was then possible to track it back in our family for the ones who have "fibromyaligia" or vascular heart conditions etc. And yes its very hard to watch my son wake up everyday feeling the aches and pains and "flu like" symptoms that I have known for most of my adult life. My eldest daughter seems to manage her POT symptoms through the "normal" life adjustments and my youngest daughter just started college this year and prefers not to think about it. Really who does? Seeing her Mom and brother so sick ... it has to frighten my girls to some extent. But I've always told them we don't really know why things get worse or better in some people at some times and there isn't any reason to believe either of them will end up like me. Then again, I told my son that too. *sigh* So for now we'll just keep on keeping on, I do hope he opts to join some of the support networks for EDS I think he'll feel a bit more control if he talks with other people his age and hear about their healing journey.

Thank you again for the information and kind words ♥

Deep bow, warm embrace to all my old DINET friends. It feels like I have been away for a very long time and something inside me just so needed to check in and hug people who would understand. I'm missing the connection with those who understand what it means to live with a life limiting illness. I don't talk about it much ... other than in graceful poetic ways from my blog. But right now, it just feels so hard ... and so very "alone" in it. That this is the only place I know to come where I know there are people who understand deeply the pain.

I make whatever peace I can with being housebound (the dysautnomia is hard and my nerves are shot ... you know how it goes with hyperpots.) And while I think I've "known" that my kids are all orthostatic intolerant ... my son (who dropped out of college last year due to illness) was seen by a specialist last month and scored 8 out of 9 on the beighton test for EDS. Each of my kids are classic EDS bendy .. all of them are also text book POTS (80 pulse at test 120+ standing) .. we've never done any of the formal tilt table stuff with them because they each manage well ... until last year when my son took worse.

When the specialist found out I had formal dysautnomia diagnosis he told him some version of .. awe that's too bad, there's nothing we can do for that. Which is true in my case. My own PCP knows that all too well. Nonetheless, we'll try and find an EDS specialist for my son and see if there is anything different he can try .. but we move so slowly .. and you all know what a long road he has ahead. Brings tears to my eyes.

Well gosh .. I so like it better when people who are hiatus come back with GOOD NEWS ... LOL. Sorry. I promise to be more perky down the line.

Right now, I'm just circling the drain a bit.

I found the site http://msgmyth.com/ a couple years ago and swithced my diet around to avoid loading up on foods with high glutamates (hidden MSG). For me it does make a difference. I try to eat less processed foods and avoid protein powders and bars etc. which all have some version of Soy Protein Isolate or Concentrate. However, I have no problem with tofu or soy milk etc. It's important to remember that even natural foods like tomatoes especially when cooked, contain very high levels of free glutamates. Everyone reacts differently. And it may be the glutamate load in any one meal as opposed to any one particular food.

I only like the tinctures since I can control exactly how much I want to dose at one time .... I also can let it sit under my tongue for a LONG TIME when I want really quick absorption. I only buy online. Amazon.com has one that I've been getting recently. Its a member of the mint family and I hear really easy to grow. Susan Weed's book on menapause was the first time I heard about Motherwort and I think she has some articles on making the tincture at home ... http://www.gaias-garden.co.uk/articles/Sus...erbexpert4.html

I'll second Reen's shout-out for motherwort. It's my drug of choice for the last year or so. I use it during a hyperadrenergic flaire or hot flash. Side effects caution use if you have thyroid disease <which I do> but my PCP is aware that I am taking it and it has not impacted my hashimoto at all ... by way of lab work.

It also cautions lowering blood pressure ... but since I take it during a surge, i've not had any issues with that.

It's my best perimenapause pal and the most effective antidote for hot flashes or palpitations.

I have issues with reactive hypoglycemia and post pranial hyptension ... I can pretty much count on getting sick after eating anything before 3 in the afternoon. But I DO eat because it is much worse for me if my blood sugar drops on its own.

I eat every 2-3 hours ... VERY SMALL AMOUNTS until later in the day (usually dinner) when I can eat a normal size meal.

What works best for me to stabilize things is four ounces of whole milk. Low fat milk has milk solids added to it and these tend to cause an MSG like reaction (http://msgmyth.com has lots of info on hidden sources of glutamates.) I also take two ounces of aloe vera papaya ... to settle my stomach and aid in the digestion.

Good luck finding what works for you.

I didn't think twice about EDS because I don't have the "classic" hypermobility joints. That is I don't score very high on the brighton scale. On the other hand, I can put my foot behind my head, all three of my births were under two hours labor, my mother has fibro etc. etc. ...

Then a couple months back my youngest came home and said some version of "Hey Mom can you do this?" And then proceeded to do some "strange" twisty thing with her leg. Long story short I asked each of my three children to do the Brighton test and they are all classic hypermobile. I then did the poor man's tilt table and EACH OF THEM would qualify for POTS -- their pulse was up more than 30 BPM from supine to standing. My girls were each over 120.

I brought an article (or two) to my last Doctor visit ... plus some photos of the kids performing the brighen postures. I showed him the graphs for heart rate on standing and supine and he said it was pretty clear that for me the POTS looks to be genetic and that I did pass it along to each of my kids. At this time each of them are very healthy and have no "issues" with the POTS or EDS. So we are doing the normal "preventative" measures (salt, hydration ... and my eldest is considering compression for her teaching career) and we are taking a wait and see approach.

Good luck on your healing journey.

I got my wheelchair a year ago last January and I should have gotten one many years before that! I had no idea how helpful it would be on so many levels. At my worst I was able to use it from the bedroom to the bathroom -- which was the only two places I was going at the time.

I use my chair now only when I leave the house, which admittedly I am still too sick to do very often. But I absolutely love doing for a stroll around the cul d'sac on my own power. My arms are strong and it feels so good to work my upper body in the chair. I found that I did far more exercise with my chair than I did before I got it. Subsequently I have been able to do more floor exercises as well so that my legs and abs are also in good tone.

For me, the chair allows me to be more active and enjoy the time when I am out. It is such a blessing at the doctor's office, where there are long corridors and often long waits. My manual lightweight chair has elevating leg rests -- perfect for my POTS.

When I asked about the wheelchair, my doctor was very supportive. He helped with the insurance paperwork and I was approved within a couple of months time. Someday as I may consider a power chair or scooter. But for now and given where we live, the manual lightweight chair works fine.

One thing I did before bringing up the idea with my Doctor was to rent a chair from a local drug store for one month. That way I could see for myself if it would be of any value.

Good luck on your healing journey.

Thank you Ernie for posting and telling us about the amazing parts of your healing journey. It is so good to know that even after a LONG period of being down and out ... that the body can find its way back. As you said, it may not be a cure but you are so far from where you were and I know you are deeply grateful for all that you can do today.

thank you for sharing.

~EM

Yay you for the Paraguard. I've wanted one but I'm just not up to getting myself up and out to go and get one these days ... plus I'm only a few years away from wrapping up menapause I figure ... so why bother?

As for Advil ... there were a few years when I stopped taking it after a bad reaction. But then I just started taking Junior Advil or Children's Motrin and worked my way back up to a full single dose of Adult Advil. Thank goodness because it's the only thing that helps with the menstrual cramps.

I still notice that I don't need much, as I am med sensitive. So I'll take one 200 mg tablet and not need another for 8 hours. You may want to try a smaller dose and just see how it goes. I once did cryo at the GYN and only took a single advil. And I don't recall taking anything at all when I had the mirina IUD put in some 8 years ago.

Good luck! Hope the paraguard works well for you.

My experience is the similar to MomtoGuiliana, I was diagnosed Hashi in my 20's and I've had thyroid nodules come and go over the years. I understand these to be quite common with Hashi and in fact the only treatment seems to be taking thyroid hormone .. which most of us are doing anyway. The challenge with Hashi of course is that sometimes we go high (hyper) and sometimes we crash (hypo). Despite ardent attempts to modulate my synthroid or levoxyl over the years, I've never been able to get a good handle on "controlling" this autoimmune disease.

Good luck on your healing journey.

~EM

I was having a problem with flushing last summer and came across http://www.msgmyth.com/ which also lists all of the foods that have high levels of free glutamates which can be a problem for people who are sensative to MSG. I now steer clear of most of these foods and I do think it has made a difference.

I hear this is quite common. For me I suspect my blood volume is low so when I stand the machines have a more difficult time taking the reading. I do have a biofeedback device I have used that will show each heart beat and I know my beat-2-beat variability is MUCH higher when I am standing. So for instance, when I am laying down my pulse may be between 70-75 (70 on the exhale and 75 as I take a breath in). But when I am standing the variance is much greater ... say 100-120+ (100 on the exhale and 120 or more as I inhale.) I think machines can tend to have a rough time finding an "average" when there is so much fluctuation. But for POTS folks this could be "our" norm.

So sorry to hear the update. Keeping a good thought for you. I hope the insurance companies stay on top of this and treat you well.

~EM

I am not sure I know about the powdered form of gatorade. I had a physician tell me to drink mega amounts probably a dozen years ago. I did that for perhaps a year or more drinking 32-64 ounces a day as I was able. I ended up with systemic candida -- my guess was because of the high sugar content of gatorade.

Thanks Sue! Somehow in my disordered mind it felt like I was the ONLY person not attending her daughter's graduation. I also get to see her all the time and I know she understands. We often joke about hiring a celebrity look-alike who can stand in for me at these special moments. And of course I'm a whiz with Photoshop! I can BE anywhere I want to be in hindsight. ;-)

No small surprise that I found myself spinning these same questions around in my head this morning ... then I came to the DINET boards and saw your post. Deep bow to you Carina for being such a pioneer and blazing this trail on your healing journey. I do believe that those of us with POTS who also have panicdisordered minds find ourselves in a unique situation. Unlike people with traditional phobias, irrational thoughts or unbased fears we have an organic component to our illness that sometimes can get caught up and intertwined with anxiety reactions.

From my experience (and dozens of years in therapy) things like "exposure therapy" in the traditional sense doesn't work for people with a chronic illness ... in that we may never feel "good" in a particular situation no matter how many times we face and accept our symptoms. At best what I have come to practice is how to feel REALLY REALLY BAD wherever I am. The "stay-where-you-are-approach" has alot of merrit in that it allows us to continue with as much amount of normalacy as we can within the confines of a life limiting illness. But whereas folks without POTS and only panic can look around and rationalize to themselves ... "Look at all of these other people standing in line, they aren't panicking I don't have any reason to feel anxious right now." ... that doesn't apply to someone with dysautonomia. OUR positive thinking has to be more along the lines of "I HAVE POTS" (its important to remind ourself of that because it lets us remember to be compassionate with our symptoms and our response) "My doctor assures me that my heart can handle these hyperadrenergic flares and I can do some things now that can help mitigate the symptoms." That when you decide that wherever you are you can SIT DOWN. It's ok to sit on the floor, prop yourself up against a wall, or lay down in your car in the parking lot until the flare passes. It's not running away when we take steps to soothe and comfort the symptoms of an autonomic storm.

<<Should i just sit at home and never do anything to wake up any emotions that set me off in order to not provoke my ANS?>>

Let me put your mind to ease with this question .... coming from someone who had to stop working in 07 and has been homebound for much of the time since .... SITTING AT HOME DOES NOT KEEP YOU IMMUNE FROM THE FLARES. No matter how much meditation I do, breathing exercises I practice or combination of inactivity or ANS retraining ... I STILL go through the daily surges associated with hyperadrenergic POTS.

<<I dont want to die only because i watch an exciting movie or because i say good bye to a friend who moves away.>>

I had to smile when I read this thought, because it is one that I have had for years .... it's as if I worry that when I get up to the pearly gates they are going to tell me "I'm sorry EM, you did something stupid and we can't let you in. If only you had heeded the warning signs sooner." Having said that, I do know what things I can handle and what things are simply too activating to be able to "stand and deliver" .... so for me, I will most likely miss my daughter's graduation this May as well as a very important event in April. Both of these bring a tear to my eye. But in my old age, I am coming to realize there is no "easy path", no "safe script" for how to manauver through this dis-ease. At best we do what we are inspired to do in the moment ... nothing more .. nothing less.

Be gentle with yourself. You are doing an amazing job.

~EM

This has been a big help, I can much better grasp all of the various issues or symptoms that could be implied when we think -- "I can't swallow." It let me really look closer at my own situation with a much better vocabulary.

In my case when it happens it is much more like Julie described my swallowing reflex seems to shift from automatical to manual. I have never choked or gotten food stuck in my throat it just becomes very labored to swallow. Much of the time I can feel a lump like in cricopharyngeal spasm. Actually my symptoms fit thst to a tee accept it says that the spasm gets BETTER when you eat and that is the opposite for me.

I suspect as well, if I took an aterax it would abate because that pretty much relaxes everything in my body. The coathanger spasms have been hard lately and I have to suspect this is just one more muscle group joining in on the fun.

Yesterday I made a point of reclining when I took my meals and I had dinner prepared two hours in advance and it was just simmering on the stove until we ate, and I had no problem. <Veggie BBQ Chickie on whole wheat buns -- so it wasn't soft food for certain.>

I will keep a symptom log for my next Dr. appointment and let him know what's up.

Deep bow of thanks for sharing your stories. Good luck to all on your healing journey.

So good to hear from you. Thanks for the update. The drug metabolizing test is one that really interests me. Its one of the few things on my list of tests I still want to do.

Do take care.

~EM

I know I've seen periodic comments on Dysphagia before on the boards. But I'm just tossing out (up?) another question to see if it seems to fit a pattern anyone else has experienced.

This doesn't happen all the time but when it does I think it clusters for a week or so at a time ... I have a very difficult time swallowing even saliva. At times it feels like a lump in my throat but sometimes just a very dry throat and it's like "locked" or frozen and there is no swallowing reflex at all. For me it seems to happen only at dinner or late in the day. Hot water seems to help, but most of the time I just have to leave the table and go lie down for an hour or so. In fact, now that I think of it, I can't recall it ever happening if I am taking my dinner while I am reclining with my feet propped up. It happens most of the time if I am sitting up at the table. Usually after being on my feet for a while doing prep for dinner. That's why i was wondering it is somehow related to the POTS.

Anyone else have any issues with intermittent swallowing problems?

~EM

I tried to find the full text to this but my online library didn't carry it. Anyone able to see this article in full print?

Hey Firewatcher!

What's the problem? You got two young boys ... give them some saftey scissors and let them go to town!! I'm fond of the Pema Chodron look myself. Just can't talk my husband into letting me buzz mine all off.

Hugs to you sweetie ... if I was there i'd do it in

a heart beat for you. I've cut my kids and husband's hair for years.

~EM

As I am most often laying down during sex ... I find that my heart rate does not increase noticeably, however it does briefly during orgasm but in comparison to walking up a flight of stairs it is negligible. Just as our bodies may have a hyper reaction to adrenaline (i.e. hyperadrenergic POTS) it may well be that some of the sex hormones also have an "exaggerated" response in our blood stream.

I might wonder ... do the symptoms happen during sexual arousal that does not involve any physical activity (like reading erotic literature or watching a sexy movie)? Do the symptoms happen during sexual arousal that does not involve another partner? Sometimes we know our body and know what feels good and what is pushing us over our threshold of tolerance. Each small piece of the puzzle may help to figure out if there is something that can help.

Deep bow Carina. Thank you SO MUCH for saving me the trouble of creating a post!!

I started having these SAME symptoms a few weeks ago. They are driving me CRAZY!! I'm a veteran of panic disorder and these are not panic attacks. I have a bio-feedback device I use at home that charts GSR (skin response) and Heart Rate. For me when the "flare" hits it comes with a sense of constriction or tightness in my body and sometimes waves of heat. My heart rate stays relatively normal for me -- but my GSR goes through the roof. I've had the bio-feedback device on during a panic attack before too and its a very different pattern -- plus you feel like you are dying ;-)

I'm not "panicked" during the flare -- though I desparately wish it would subside because it is very uncomfortable. Hot packs seems to help (which seems odd because I am already feeling a bit flush) but other than that TIME seems to be the only thing that is consistent as they average about 30 minutes for each episode.

I've had some days where I'll get four or five of these intense flares and then I'll have a whole day without one.

I can't pin point any stress (other than these!) though I have been a bit more "active" lately. More cleaning and a bit of yard work.

I have taken my BP during the flare and sometimes it shoots up pretty high (150/100) but most of the time there is no difference.

My sense is these must be some kind of hyperadrenergic phase of the POTS. I tend to notice it more about 30 minutes after eating ... but I've also had them hit at like 11:30 at night. So no idea about correlations.

Big hug to you ... I know how hard it is to just "sit these out."