EarthMother

Oh sweetie I am sorry. I know this transition is not easy. I worked for the same institution for over 23 years. I loved every moment and they loved me. But there finally came a time when it wasn't working well for either me or my workplace. I couldn't put in the hours I needed to, I missed important meetings and my health continued to decline year after year. My husband also lost his job that same year. It was devastating for us -- and is still very hard. There is so much paper work that needs to be done for the short term insurance that should help in the near term and your long term disability insurance claims (if your employer had one) and then the social security disability claims .... I can't imagine how folks who are ill wade through all the paper work. But being in HR you know how to navigate the system and that will help you greatly. There is the piece about "not knowing" that seems to be the hardest part to get our heads around. And to this, I would suggest NOT trying to wrap your mind around it. The brain is a useful tool when we need to do math or something very cut and dry ... but when it comes to living in the moment, allowing all that is to come to us in due time ... well our brain just isn't use to taking time off and exploring this new frontier. And you are a pioneer in this moment. Blazing new trails to new territories that you have never been before. And while it may seem like you have lost something that you loved .... the universe has a way of showing us there is more in life to to love than we ever realized before. At times like this, our world can indeed open in a way we never before thought possible. All of my good thoughts to you and your family through this transition. ~EM

I think yeast is something some women are prone to. I have read over the years that birthcontrol pills can be a common cause. Here's what Women's Health . Gov says about cause .... ------------------------------------------------------------------------------------------------------------------------- Why did I get a yeast infection? Many things can raise your risk of a vaginal yeast infection, such as: * stress * lack of sleep * illness * poor eating habits, including eating extreme amounts of sugary foods * pregnancy * having your period * taking certain medicines, including birth control pills, antibiotics, and steroids * diseases such as poorly controlled diabetes and HIV/AIDS * hormonal changes during your periods ------------------------------------------------------------------------------------------------------------------------- Hmmmmmm.... Stress? Illness? Certain medicines? Sounds like easy triggers for POTS women who are prone to yeast infections.

What I did first was RENT ONE myself for a month (a manual chair). That way I could see if it was something I wanted to pursue. After I saw the advantages of what I was able to do and the potential for even more down the line. I made an appointment with my primary physician to discuss how this could help. He readily agreed and we put in a request to my insurance. It was approved and they delivered a manual chair to me (as a long term rental ... the insurance company always owns the chair). After a year I will make another assessment to see how things are working ... and if need be make an application for a power chair at that time. There are also some really good prices out there for chairs -- ebay, craigslist, pennysaver. Look around for garage sales ... there are some barely used chairs for cheap.

Oh sweetie....I am so sorry. And with all that good karma I've been sending you ;-) Feel better soon. ~EM

After being unable to go out at all for coming up on two years ... the manual chair I got two months ago is awesome. I have a long way to go before I feel comfortable to handle my symptoms in a store or venturing out like I use to --- many moons ago --- but I can now go to the park and really enjoy the experience! I've been working on building up my arm strength so that I can do more myself. And it is such a wonderful sense of exercise ... much different from the POTS tachy ick I get when I try to do anything standing up. I really like feeling the breeze in my hair as I roll down gradual inclines. Its like when you were a kid riding a bike and shouting -- Look ma' no hands! LOL But I'm wearing padded palm gloves and completely in control. I hope as I get more time and confidence, my world will continue to open up and I can go more places again.

Oh sure. There is the ... 1. Tachycardia on standing feeling bad, 2. The exhaustion afterwards feeling bad 3. The nausea and morning ick feeling bad 4. The after meals feeling bad 5. The body pain feeling bad ... I could go on ... ;-) Point is only a few are evident with tachy symptoms, but IMHO all relevant to an autonomic imbalance. Here's an interesting sidebar ... I have a biofeedback device of sorts (the one I used in my youtube video) and I have had a chance to watch what happenes FOR ME (only) during some of the really bad flaires. My pulse meter which does averaging might be picking up a pulse rate of 85-95, my BP looks normal .... but the skin response and heart beat chart shows that my pulse is having HUGE swings of varience on inspiration. Its normal for our pulse to speed up when we inhale and slow down when we exhale ... and I've used this grapher all the time, from deep meditation to peek of POTS flaire and I know what's normal for me. So even though my pulse seems fine -- the chart will show a 30 point difference between inhale and exhale during a bad flaire. It's actually quite impressive. My skin response which is typically low also shoots up rapidly during these episodes. Its interesting to watch it all come to a peake and then slowly work its way back down. Much different than if I was having a panic attack (in which case the tachycardia is clear and unbidden) and also different from the POTS tachycardia on standing. I've chaulked it up to some kind of ANS glitch that comes on from time to time whereby my body seems to struggle with handing off between the sympathetic and parasympathetic branches of the ANS. But who knows?!

Likewise, I wasn't offended at all. Sorry if my soapbox rant seemed personal, it was not my intent. Its brave to talk about these things ... we often don't mention panic symptoms for the exact reasons Suzy described -- we get meds pushed on us and end up a lot worse than when we started. My severe POTS crash last summer was predicated in exactly that manner. Thanks for raising the issue and letting all of us have opportunity to add a shout out. ~EM

I have had both POTS and panic disorder for over 20 years. In my case my first panic attack (age 20) which the Doctor's labeled as an asthma attack came before my first medical record note (tachycardia on mild physical exersion) (age 22). They knew nothing of panic or POTS back then in the 1980's. Having been an expert in both for decades I can tell you that there are some real differences between POTS people who develop panic disorder and the rest of the panic disordered population who are not orthostatically challenged. Non-POTS panic people do not see a drop in heart rate when they are supine. The triggers and phobias for POTS people with panic disorder are also unique and follow particular patterns that stem from our physical challenges. While some of these conditions are also seen in the general anxiety population, the POTS panic folks tend to all exhibit these at one time or another to a greater or lessor extent. For instance, POTS patience with panic often have accompanying agoraphobia (small wonder, who wants to pass out at the mega mart?) We tend to become worried over what we eat (because post pranial hypotension and over sensitive allergic responses send our bodies reeling.) Moreover and perhaps most important, the types of treatment for panic disorder for someone with POTS is very different than people who have panic without POTS. For those of us in the former catigory, the treatment needs to be focused on our symptoms of dysautonomia. No amount of cognative behavior therapy or even pharmachological therapy, I believe, will "cure" panic attacks in a person with POTS unless there is also a decline in the acute crisis stage of the dysautonomia. Sounds complicated? It's not. For everyone I've met on my healing path over the years it boils down to ... our panic is much better when our POTS is doing better. And despite what some no doubt well meaning "doctors" may claim it is NOT the other way around. If panic disorder could cause POTS there would be a drug trial list as long and wide as benzos and SSRI'S specifically geared for POTS. But there's not, because while there is often comorbidity (fancy word for two symptoms that occur at the same time) there is no causation. Actually let me refine that slightly ... PANIC does not cause POTS. But for some of us who are perhaps genetically prone, POTS can cause an organically induced variant of panic disorder in some but clearly not all people with dysautonomia. Ok, EM is stepping down from her podium...lecture over. ;-)

Thanks for the links, I'll check them out! I didn't know about taking antibiotics for root canals and extractions. I've not had either. My youngest had a nasty spill on a bicycle a couple years ago and broke her front tooth (as well as lots of cuts etc. on face, lips and mouth). The Dentist had to do a few procedures over the course of a couple weeks as the swelling from her injuries subsided. He prescribed an antibiotic which I hadn't heard of so I looked it up and was very concerned about the dose he recommended (she was all of 80 pounds) and the side effects -- she's allergic to penicillian so I am cautious. We agreed to forego the antibiotic as a profolactic (she had no sign of infection at the time) and wait and watch to see how everything faired. Keep asking questions, call everyone in the book and hopefully you'll find something that works for you.

I have three children, my eldest is 21 and no one new about POTS back then. We called it idiopathic orthostatic intolerance. It put me in the "high risk" category for my first delivery, mainly because no one knew what to expect. I was out on short term disability with my first born ... looking back I think the severe morning sickness that lasted almost five months had probably dehydrated me and tripped a POTS flaire. But I was feeling pretty good in my third trimester and delivery was normal. My other two pregnancies were no longer even treated as high risk. My Doctors felt comfortable with how my body responded and I had no problems related to POTS. Good luck finding what works for you. ~EM

Thankyou so for sharing the good news. You may have already said but how hard is it to get the enzyme test? Quick thought on the Dentist visit ... I have asked on at least two occasions to have no drugs during the procedure. The first Dentist was Korean and she readily agreed -- stating that where she was from that was standard due to money asons anyway. The second Dentist was American and much more leary ... but I explained my reaction to the meds was worse than my reaction to pain ... and that if need be we could always stop and shoot up something. The procedures were a two sided filling and a three sided replacement. I'd do either again the same way. Pain goes away rather quickly compared to the hardship we endure with the drugs. Good luck!

I'll jump on jump's comment the GTT are classic reactive hypoglycemic ... not only is the spike high but the drop is really fast and dips even below the first fasting level.

Wow. Your plight has touched so many cellular memories for each of us. Understand that we can only express our own reflection of the situation back to you. Ultimately we are each alone in where we stand in the moment and in which direction our next step will lead. In my reality ... this moment is all there is. Accepting what is in this moment, just as it is is how I try and shape my life. Sometimes people may not understand what is meant by ACCEPTANCE. Fearing that if they accept their situation, there will not be change. But acceptance, for me, means really seeing how things are and not holding on to a hope that things could get better some day. It is only when a woman ACCEPTS that her aggressive partner is the way he is, that he has not changed in all these years, that she can then decide to end the relationship. Trust your wisdom and may strength and courage come to aide you in whatever step occurs for you to take next. ~EM

Lots of sage advice here ... My not so medical observances based on my crash last summer .... The weeks after the hospital were the hardest. It just wiped out my system and raised more questions than answers. So much of what I needed to do was settle into the cycles and waves that followed. I also had to do very light meals. But they also had to be complex carb, high protein and fat. So whole grain toast with real butter and a slice of cheese worked well for me. Then I'd eat again in 2-3 hours, perhaps nutbutter, rye crisp and some soymilk. etc. Keep a food and symptom diary for a few weeks. I was also checking my blood sugar regularly throughout the day since I was still getting wicked lows. I also get tremendous pain in the back of my neck and shoulders. And most of my symptoms still are at their worst after eating. For the coat hanger pain, I find what really works are some hot packs my husband can nuke for me in the micro. Which seems counterintuitive because I am usually also having a hot flash! But the spot on heat on the back of the neck really helps...for me. Lastly ... welcome to the forum Michele. I know this is the last place you want to be and wished you never had to experience all of this &%$%#@&&*!!@#! ... but when you find yourself at the bottom of a POTS hole, well its nice to meet people who have been there and understand ... and even some who have crawled out and lead somewhat normal and often fullfilling lives. Good luck to you on your healing journey. Salubrious. ~EM

I got a call from a Doctor I saw probably three years ago ... she works in the medical group with my primary physician and had heard that I was had taken a downhill turn and wanted to talk to me about some new information on adrenal fatigue she had come across. She is an regular MD but also acupuncturist and specialist in Chinese medicine. I think highly of her and really respect her insights and was frankly very surprised that she even remembered who I was after all this time. She said she had learned a lot more since I worked with her a few years back and in looking at some of the old saliva tests I had done back then and based on what she knows now, she says it was clear I was circling the drain (not her words, but you get the idea -- a crash waiting to happen.) Long story short, she asked me to come in and look at some of the new findings and discuss what diet/herb alternatives might be helpful to me at this stage of the game. Citing that in my case, she remembers that traditional western medicine does not work well with my system. I think I recall that Flop was working with a practitioner on adrenal fatigue. Does anyone have any research or insight into this? As soon as I can get myself together enough (and arrange rides etc.) I plan on meeting with her and will let folks know what I learn.

Sorry you are having such a rough go Rou. In brief, some folks don't do well on drugs like Paxil or Beta blockers ... after good hearted attempts, my Doctors now agree. And in my case I DID have some horrendous withdrawal effects from benzos after only a couple months. My cardiologist who affirms I have POTS also feels given my history that the beta blockers would only make things worse. And yes, he doesn't seem concerned that my heart rate goes up drastically when I stand. But I don't think its because he is putting me off, I think he genuinely believes that the beta blockers wouldn't be the answer I am looking for. And when I've used them before years ago, they didn't help the weakness or fatigue or nausea etc. For me, I do eat very small meals every 3 hours or so. Its much easier for my body to handle this than a full on meal in one sitting. Oh and for the record a load of laundry IS a big accomplishment for me! It wasn't always that way ... and I trust things will settle down again some day ... but for now, this is just the way it is.

I did the Mirena for almost five years and loved it. However towards the end of that last year (when it was due to be removed anyway) I began a slow slide into a horrid crash that I still have not come back from approaching two years now. Can't say if it was the Mirena ... I did try a few other BCPs after its removal, until my Cardio recommended (insisted) that since I am in my mid 40's I should not be taking even the low dose BCPs. So I'm flying solo into perimenapause.

I often wonder what is a "baseline" heart rate for a person with POTS? Would that be supine? Sitting? Not standing, most certainly! My supine "resting" heart rate is 75-85. Sitting up propped to read 85-95. Sitting up unsupported 95-105.

My therapist has concluded that I have = Anxiety Disorder Due to a General Medical Condition -- POTS. Which is consistent with what other therapists have said in the past, including a couple psychiatrists whom some of my more annoying doctors at the time insisted I go see. BTW the psychiatrist also recommended finding a new primary doctor (that was more than 10 years ago and I have since found a keeper!) LOL This past summer I was in a deep POTS hole and the panic disorder was at an all time high. Even getting to my cardiologist was a major challenge. But once I was there, he was able to reassure me that the increase in PVCs and some of the other strange symptoms were still "normal" and more over he explained what he believed to be a hyperadrengeric phase of POTS. I was still shaking and very tachy ... but at least I didn't feel like a complete nutcase when I left his office. I'm not inclined to apologize for my anxiety (other than to my husband on a regular basis for making his life so difficult) -- not to my doctors. These symptoms ARE difficult and they should understand the impact it has on our lives. I am fortunate to have a team of specialists who understand and do not try and push a pharamcological approach which has not agreed with my own bio-chemistry in the past. My cardio also suggested that as I am in my mid 40's, it could be that the combination of POTS and perimenapause could be making things more difficult than in the past. Good luck getting answers that you want and the respect that you deserve from your health care team!

Deep bow of thanks for such a thorough explanation. I feel so much better informed. Just the right blend of technical information with enough "Dysautonomia for Dummies" jargon so that it was simple to comprehend and digest. Thank you again.

If anyone doesn't mind sharing ... What tests did you have to determine PAF. The symptoms of POTS and PAF seem to over lap from what little I read at a glance. I see mention of plasma and urinary norepinephrine levels being decidedly lower in people with PAF. Is this the test that is "conclusive" to determine if you fall into one camp or the other?

It would be good to get an endocronologist to consult, especially since you are checking hormones like cortisol. Getting a glucose tolerance test with hourly insulin levels would be good as well. Tho it may be more than she can handle comfortably in her present state. I know my endo dissmissed my GTT values which indicated pre-diabetes and reactive hypoglycimia -- since it was done while I was lying in a hospital bed. Compression has helped me at times over the years. Its always worth a shot. The hospital stay can be depleting so expect a bit of a crash when she comes home. And reassure her its perfectly normal -- given her circumstances. As someone who has been house bound since leaving my career in 07, I completely understand the frustration, fear, anger and feelings of despair that arise and fall away on this healing journey. Good luck to both of you.

Fingers crossed that new opportunities will be available to your daughter soon. I know you know, but do be very careful with SSRIs in terms of skipping a dose. These are serious meds and if you do believe they are contributing negatively to your daughter's situation, you should find a doctor who is willing to help her wean off of them. Under no circumstances can you go cold turkey with any of the brain meds. Good luck finding answers and options that work for your daughter.

So sorry sweetie. Trust that it all comes in waves. What I find hard is to notice "progress" when the pain and symptoms are moving around like a game of 3 card monty. One clears up ... or subsides ... just as another one begins to flaire. The end result is that you feel like CRAP all the time. But what may be happening behind the mayhem and chaos is a strange order of healing. One part, after another, after yet another. At times like this, I pick one symptom and just watch it to see how it changes. Sometimes it DOES get worse, but I tell myself, That's Ok, change is good ... change means something is on the move. Sometimes it gets better. But I keep the focus on one small part and then I can be sure to notice (and appreciate) when it subsides -- just as yet another symptom takes center stage. Another thing I have done is to make a very simple list of little things that I can't do at the moment and then checking them off when I accomplish them. Too often our "little lists" get usurped by even higher goals and we forget to celebrate our baby steps. A recent list of mine included really SMALL ACCOMPLISHMENTS like: Eat one meal with the family at the table. Not sleep in the clothes I will wear the next day (because I am too sick to change in the morning). Take a shower without my husband in the same room. (When I was too weak to turn on or off the water, let alone stand to get in and out.) I know its hard to recognize a step forward, when we often take two steps back at the same time. But celebrating every inch of our journey makes it possible for us to see that we are always moving ... and ultimately we are more than our symptoms. Gentle hugs to you on your healing journey. ~EM

Studies point to viruses as cause of Diabetes.... So I was just reading some "news" this morning and came across a blurb about two recent published studies that yielded evidence that a common virus may cause childhood diabetes in people who are genetically prone to it. As one researcher put it the results point to a virus infection preceding an autoimmune condition. My eyes perked up as I thought back to so many people with POTS that coincided with a viral infection. I really like the way some of the research is shaping up in this area. No telling what we may learn down the line.