EarthMother

Just saw the post. Good thoughts your way sweetie. Didn't know what to send, but I figure the food in there is sub par so I'm sending thoughts of cookies your way! Salubrious. ~EM

I nursed all three of my children and while some of them had nursing difficulties (allergic to the dairy I was drinking, or an underbite that caused a poor latch) none were due to my own milk supply. My kids nursed for between 2-3 years each -- so as for lactation production and stopping it was a gradual process over time as they each self weaned.

Prayers and good thoughts coming your way! ~EM

Keeping a good thought for you. ~EM

When I slid into my most recent POTS crash last spring, it began with a rapid loss in weight over a very short period of time. My memory was it was 15+ pounds in 2-3 weeks. There was nothing I could do at the time. No matter what I ate, the weight just kept slipping away. I know that sounds like a dream for some people, but I also realize that many of you know how hard it is to function with the resulting low blood volume. For months I tried to boost up my calories -- whole milk, real butter, lots of salt, 6 mini meals a day (I was also hypoglycemic at the time so eating frequently was a must.) But NOTHING I did put on even an ounce. In fact I continued to lose a pound or two every month. Then all of a sudden something just changed in my system. I noticed the POTS was still horrendous, but some of the other symptoms (frequency of the surges, nausea etc.) seemed to wane slightly. And without changing my diet in the least, the pounds started to come back slowly (maybe a pound a week.) Now of course, I am approaching a weight that I think would be NICE to stay at for a while ... but again, even if I decrease the calories (cut out the real butter!) the weight continues to creep up. I've noticed this pattern over the years. I'm not a yo-yo dieter by any means. I eat a whole grain, whole foods vegetarian diet and have for a dozen or more years. But sometimes it seems my body gets this "set point" in its head and seems to adjust my metabolism according to that target. Then it may stay at that weight for a number of years. Until the next spin-dry cycle and it all goes to POTS! Anyone else experience weight loss or gain that seems inconsistent with intake or activity?

My cardiologist had a different explanation of the hyperadrenic cycle of POTS that I seemed to be since last spring. He said that in my case it wasn't that I had an "abnormal" level of ephinephrine but that my body was reacting to even normal levels with an inappropriate response. Which certainly made sense in my case since my labs were showing normal values but my system was seriously misbehaving. I had TTT years ago (and yes get a copy of all your lab records -- the hospital LOST my TTT and now neither my physicians nor I have a copy of it) and the cardiologist just did a quick stand and deliver blood pressure check in his office to re-affirm what was going on. Oh, and we did another Holter test because I was complaining of skipped beats. Everything was textbook POTS. Good luck finding someone and somethings that will help.

Another thing to remember about blood pressure ... especially if you are using the wrist cuff devices -- is that if you take it too many times in a row you can get "bad" readings. Especially for those of us with low blood volume anyway, it may be that the compression of the veins from the cuff doesn't come all the way back to "normal" before we take it again in quick succession. It was good you thought to change arms. But I know for me I get a lot of error readings when I am standing.

I had an ACTH stimulation test (measures levels of cortisol in blood before and after an injection of synthetic ACTH.) I also had 24-hour urine test for epinephrine and norepinephrine. Also some blood test for catacholamines. All were normal in my case.

I forgot to mention ... (brain fog) but for five years previous to trying the birthcontrol pills again last year I had the mirena iud. This is a ultra-low hormone coated IUD and that for many women lightens the period and in my case completely stoped menses after about a couple years. So for the last three years, other than a very scant spotting now and then I had no period whatsoever. It wasn't until the five years were about up on the Mirena that I started getting all of the intense POTS flares again. Hmmm.... at the time I was blaming the Mirena in my mind ... but maybe it was that the horomes were about through that caused the issues to come again. I'd still recommend the Mirena.

Goodness knows I can't give any advice about sovereignty since my husband is with me all the time 24/7 upon my request because I simple can't cope with the symptoms on my own. Aside from that, I DO try and do as much as I can without physically imposing upon him as well. During the really rough spells this past summer, I used a device in bed -- a porta-Jane kind of bottle that is designed for women to use. It really helped because I was getty SOOO tachy when I tried to get to the toilet on my own. I also took to sleeping on the floor and rearranged my room so everything was accessible to me on that level. I still do this in my kitchen, because I love to cook but can't stand up enough to prepare anything. I still use an office chair to wheel around a bit, especially in the bedroom. But most of the time I can do so on my own without asking my husband or one of my kids to push me around. Good luck finding something that works for you and your family.

I use to be on Seasonique (or was it Seasonale? One of those has a low dose hormone even during your OFF week and that is suppose to make things better for those of us who have horrid crashes during menses.) But my cardiologist insisted I go off hormones completely. I am 45 and he is concerned about the implications at my age. So I've been hormone free pretty much for the first time in decades (except for my three children ) and so far it hasn't been too bad. Honestly I was having equally horrid symptoms even while on the Seasonique. I also tried Ortho Tri Cycline. Surprisingly it was when I went OFF the BPs that my hot flashes have diminished. Strange I know. I still get more tachy the week before but so far I can't complain. I hope that I can stick it out through the next few perimenapausal years and then just be done with it. Good luck finding something that works for you.

My preference is thigh high compression stockings. If I want ab compression I wear that separate. I normally can't tolerate anything on my waist. I also live in Birkenstocks so I cut the stockings at the ankle. Which is harsh given their price! But I hate not having my toes able to wiggle around. I never get pooling in my feet, my ankles never swell and I've not had a problem with snipping the ends off my thigh high compressions. Good luck finding something that works for you.

I bought a recumbent bicycle on clearance a couple years back it was good because I can lean back and peddle. But inevitably I seem to injure my back each time I use it for a few days even with low tension and going really slow. These days I'm not strong enough to even sit on it at all. What I do like to do are small ab crunches. Not full sit ups, but legs bent and shoulders just barely off the ground. I get a lot of blood pooling in my abs and I am hoping if I tone those muscle it will help. Nonetheless it seems to be the only "exercise" I can do that doesn't make my heart shoot for the moon. Good luck finding something that works with your body. ~EM

I have autoimmune thyroid -- Hashimoto -- in addition to POTS. And like others when my thyroid goes on a rollercoaster ride so do my POTS symptoms. I seem to be in an overactive cycle of Hashi right now with high T4 levels and non existent TSH, so I need to back off my thyroid meds a bit to see if it can settle down. As Rosanne Rosana Dana said ... "It's always something!" ~EM

So sorry hun that your Doctor did a Jekle and Hyde on you! It's sometimes very hard for "specialists" to see their theory not pan out and indeed rather than seeing that their first choice didn't work they decide that the DRUGS worked but it was YOU that didn't. Thus you don't have POTS. Well that's simply nonsense. My cardiologist actually DIDN'T want me to go back on Flurenef or any of the standard POTS drugs right now because he felt they'd make my chronic fatigue syndrome worse. It's a pitty not having something else to try at the moment ... but I much prefer a Doc that says "I don't know what to do" than one that seems to have all the "answers". Good luck finding the right support system to help you move forward. ~EM

When I was 21 they didn't call it POTS. I have a long list of things in my medical charts over the years, like "Tachycardia on Mild Exertion" or "Idiopathic Orthostatic Intollerance", etc. I started my family when I was 25 and had three children by age 33. This illness seemed to come in waves while I was younger, to the point where I was quite functional inbetween bouts. Back then I didn't realize that all of the symptoms were connected. Or that I'd be facing a life long battle with a chronic illness. I thought I just kept getting sick every few years and that eventually all this would just go away. All of my kids are vibrant, healthy and full of energy and my eldest is now 20 years old. Will any of them develop POTS later on? Maybe. My girls certainly have that skin and bones body type that seems to go hand in hand with OI issues. But so far, all is good. My youngest is the fastest runner in her junior high class. I encourage them each to remain very active -- easy to do when the bus stop is a mile from the house! My own sense is that we know lots more now than we did when I was first fighting this on my own. And my kids seem confident that even IF they are genetically predisposed that there are things they have learned from my trials and errors that will help them regardless of what life brings to their door. Keep the vision. ~EM

I saw an article in the news today on Avandia and remembered that I had read about Avandia here on DINET so I thought I'd post the link if anyone is interested I certainly would NEVER stop taking a drug (or start for that matter) based on what I read in what passes for news these days. But I might give my Doctor a jingle if I wanted to get some better information. http://www.reuters.com/article/marketsNews...454269820081125

More than the antibiotic itself, has been the DOSE for me. If I take amoxillin I need to only take it a 250mg and oly three times a day. It has always worked effectively (must take for full 5-7 days as prescribed) as a larger dose, but I do not have the side effects. Another one that I do fine on is Zithromax, but again pediatric dosing.

As the thread grew on this issue surrounding Work ... a suggestion was made (thanks mkoven) that perhaps a new thread on Disability Benefits would be helpful to some of us on the boards. So if you have wisdom to share on how things work in your neck of the woods, your personal experiences with long term, short term, government or private insurance ... please feel free to post note, share a gripe, offer a prayer or an insight. As for me, as I mentioned before I worked for the same employer for over 20 years. During that time I took several Short Term Disability leaves when I would hit a POTS hole, usually for 2-4 months at a time. In between disability leaves, my employer made informal agreements with me about doing work from home for portions of the day I was too ill to come into the office. My husband and I would chart my time in the office so that we could gage if I was improving or in a decline over the long haul. In August 2007 after at least 9 months of steady decline (missed meetings, more and more time telecommuting from home) I went out once again on SDI. But unfortunately this time my health continued to go down hill and I was forced to leave me career for good. After six months I applied for Long Term Disability benefits with my employer's Insurance carrier ... which I later find is one of the worst companies to deal with in terms of denied benifits and legal actions. The amount of paper work was incredible. I am fortunate that my husband is able to be my advocate on these matters. Unfortunately due to my declining health, he was forced to negotiate an early retirement with his employer as well, so that he could stay at home with me. Despite records from my Doctor of 8 years stating I had Chronic Fatigue Syndrom, POTS and Hashimoto Thyroid all of which resulted in my being perminantly disabled, the insurance carrier refused to accept any of it. They insisted that I go and see one of their Independant Medical Examiners ... who was almost an hour away from my home. Fact is, I've had such a hard time over the past year, that I simply don't travel any more. My therapist has been helping me to get to even my LOCAL Doctor appointments for the last year. When I explained this to the insurance company they insisted on all of my "mental health" charts as well. My therapist complied. She is also an RN in addition to an MFT, and in her statements and diagnsis she stated that I had anxiety disorder AS A RESULT of PHYSICAl ILLNESS. Well this was just the ticket my insurance company was looking for. The fact that I had panic disorder or agoraphobia meant that they could claim this was my PRIMARY illness -- I guess my inability to stand is secondary!-- and because I was now front and foremost mentally ill they could pay me for only 24 months which is the extent of their disability clause for any mental condition. So that's fun. I will either have to get an attorney or travel really far to see their IMEs and more likely both. Meanwhile I have a Holter monitor report from my cardio and volumes from my primary doctor that confirm POTS. I also filed last week for Social Security Disability. My husband and I filled out two sections on line and then sent in a book load of medical charts, lab results and our own notes and data by paper mail. So now its a waiting game ... after working for over two decades with insurance that I thought would cover me should my condition ever get worse and I be unable to work ... the reality is you never what will happen. So that's my story in a nutshell ... at least I have my sense of humor!

Yes, I agree a post on the ins and outs of our disability options and personal experiences would be a wonderful idea. I personally find myself in that unimaginable place of not being able to work any longer and with the stock market crash and our retirement savings disappearing before my eyes the prospects ARE indeed truly terrifying. Ok, so maybe I'll start that post!

Here's one of my favorite articles by Sharon Begley brain scientist talking about SSRIs... http://www.ifred.org/PDF/WSJ_111805.pdf The article describes how we don't know "jack" about how SSRIs work, that there isn't any "Not a single peer-reviewed article ... support claims of serotonin deficiency in any mental disorder." The article goes on to postulate ... "A clue to how SSRIs do work comes from how long they take to have any effect. They rarely make a dent in depression before three weeks, and sometimes take eight weeks to kick in. But they affect serotonin levels right away. If depression doesn't lift despite that serotonin hit, the drugs must be doing something else; it's the something else that eases depression. The best evidence so far is that the something else is neurogenesis -- the birth of new neurons. " My sense is this is why SSRIs work for so many disorders ... from pain to anxiety to OCD etc. Some version of if the Pill fits wear it, I suppose. Isn't it also true that often we don't even get a diagnosis until they give us a pill and it improves our symptoms! Then they say ... well you must have X because you got better when we gave you pill Y. Does knowing this help me stop searching for a diagnosis? No. But at times it gives me a bit of peace knowing that we really know very little even about things we think we know so much about.

I am also very sensitive to meds. I am also very interested in the genetic testing that Sandy mentions. I think if we can see what chemicals we can metabolize and which we do not ... we will be in better shape to negotiate our way through the pharmaceutical forest. My Doctor has recognized my system sensitivity for years and he is always starting me on the smallest dose possible (often pediatric doses) until we determine cause and effect. I did fine on florinef in the past, but my cardiologist doesn't think this will help me this round since my BP isn't dropping like before. I also LOVED DDAVP ... it kept me from going to the bathroom all day long as well as allowed me to sit through a meeting at work (when I use to be able to work.) But again, the docs don't want me taking this any more either. Bummer. Seems all the drugs I DID like are BAD for me. So awaiting the next silver bullet, I'm back to salt loading and anything diet can do to help.

Ok, strange question .... but does anyone else seem to flair AFTER having a bowel movement? I use to have IBS years ago, but don't really consider that a problem any more. My bowels are normal, smooth easy, no strain and VERY regular. But I also notice that there seems to be correlation between passing my bowels in the morning and the worst body flares of the day. I had been thinking it was some kind of cleanser in the bathroom, or something I ate right before hand, or just that it was MORNING which is always a handful for me. But now that I think back on it ... the only thing they all have in common is that they come on within minutes after emptying my bowels. Sometimes I'll get tachy, or sometimes I'll have an adrenaline surge without the rapid heart beat ... or like this morning it was WAVES and WAVES of intense nausea. I thought for sure I was coming down with the flu. But they all seem to pass within 30 minutes and I can't say it even happens each and every day. Anyone else notice an autonomic unbalance after using the bathroom?

Just as an afterthought ... and along the lines of "keeping it real" .... I thought I should add that even though at times the words can flow from a space of stillness and grace for me, it is also equally true that I suffer deeply on a daily basis with this illness and my struggle with the symptoms. Shortly after posting above, I had a huge body flair -- nausea, pain and the intense feelings of "flu" that seem to come on for me suddently without any noticable cause. Did I meditate? Nope. Couldn't the pain was too intense. Did I cultivate loving compassion. Nope. Wasn't available to me in the moment. Did I sit quietly with myself until it passed? Nope. The surge was beyond what I was able to sit with. What DID I do? I woke up my husband, felt like crap about doing that, and sat with the fan on high (which I know upsets HIS system, felt like crap about that too) and cried for 30 minutes until it passed as my husband held my hand. SO! I know the place of "end of my rope", ruining my marriage and losing my friends and I did want to let you know for what it is worth that even though it FEELS like you are alone in your journey ... there are those of us who deeply understand your pain. May we each be free from suffering. (Old Zen Prayer) ~EM

I scan all of my result (as well as keeping the hard copies) and store them on my computer. PDF files are usually searchable -- which makes finding what a need when I need it a snap. Also, before this year, I never thought about asking for copies of ALL of my tests and records. Figuring that the Doctor of Hospital would keep a copy. But I just found out this month that my TTT from 2003 has gone missing from the Hospital where I had the test performed. On checking it seems neither my Cardiologist or the Hospital has any record of the results at all. They have a record of me checking IN for the procedure ... but nothing on the data collected. Bummer.