EarthMother

Raising hand over here! Whoo hoo, me!! Mostly homebound too. Hmmmm, we need a new acronym like ... PR <Professional Resident> -- Hi, I'm a PR gal. Has a nice ring ... or perhaps, PhD. <Perminant House Decision> ... or then again maybe something like Home Executive, that we can put that one our business cards. As it is, I tend to sink into the agoraphobic label and my friends/family would probably agree. But I don't FEEL agrophobic ... I just hate going out when i'm sick. But no sugar coating my comorbid anxiety, I don't stay at home alone either, which is **** on my husband ... so there's a lot I effort to do by way of making this life limiting illness less limiting for those I love. I also interact more online than in person. And I love seeing DINET friends on facebook. PM me if you are new to Facebook and are adding buddies.

Thank you for sharing the details of your journey. As a fellow Californian, you certainly have given me food for thought and a topic to discuss with my PCP.

I went through years of low grade fevers. I had been diagnosed as CFS some 10 years ago, and back then I would get the elevated acture EBV titers and the swollen glands and those odd flu like episodes that would come out of nowhere feel like a truck hit me and then would pass in a matter of hours (i.e. bed rest.) Don't know why they stopped, but eventually they did. Can't say I'm "better" now though. Because when all the fevers where happening and the CFS crashes, I was till fairly ambulatory and was able to hold down a full time job. My own sense is that it is just one more piece (like the years of IBS that preceded the EBV which preceded my current state of disability) in a line of signals that my allostatic load was amping up one by one my body systems were breaking down.

Gosh I wish I could say I have found the miracle cure to the dreaded trip to the loo, and what is so strange to me is that sometimes the event is entirely symptom-free. I can't make heads or tails (only small pun intended) as to why sometimes voiding amps up my ANS and on other occasions it does very little disturbance. I eat a ton of fiber and drink sufficient water (though admittedly not a lot of water, as it tends to run right through me), I don't strain, I don't have anticipatory anxiety about any kind of "bathroom trauma" (because as I said, it doesn't always happen) but 9 times out of 10, when my body DOES go into full on flair ... it will be correlated with my bowels or urine kicking up into high gear. I use to keep a high foot stool by the toilet, because having my legs hanging down didn't seem to be a great thing for general blood pooling. I still tend to keep my knees up any time I use the loo, which does help, but is certainly not the magic bullet I was looking for. My own sense is .... it is simply one of the symptoms of a broken ANS and as our bodies slowly heal and try to find their way back, bit by bit, our "toilet trauma" will settle down a bit as well. Gotta go pee!

Menarche at age 12, by 13 I was missing school at least once a month with horrendouse cramps. By 16 I was on birth control pills to reduce the uterine lining. Early twenties diagnosed with endometriosis, though I think this was speculation rather than actual testing on the part of my OB/GYN. Aside from taking time out to have three children, I remained on birth control hormones until one year ago. I am currently 46, presumed permenapausal and experiecing all of the joys of flooding and hot flushes associated with the transition.

Priobiotics don't seem to upset my system at all. Worth giving a try. I still take aloe vera papaya juice (several times a day if need be) when my bowels are acting up .... I was an avid google-chondriac at the time as well ;-) reading as much as I could get my hands on about idiopathic reactive hypoglycemia So sorry you are still in the throws of this .... the 4 or 5 day break, is a wonderful sign though that your body is working its way back out. Give it time, I wish it was a linear process, but it seems we can expect several back slides down the hill as we are making our way up the mountain. Gentle hugs.

There are so many different experiences that people have with various benzos, that you would think each of us are taking a completely different drug. And we may be! My own belief is that this drug class (as well as others) reacts differently in different people. Some of us may not completely metabolize the drug, which means that each time we take another dose we are ADDING upon the last pill. Some of us get rebound anxiety with benzos, which means we are in FAR WORSE SHAPE than before we started taking it. Some people can take a benzo for years upon years with no apparent tolerance build up (which is the only concern when we talk about "addiction" -- who cares if you have to take a pill every day of your life, it only matters if it STOPS working) and some people have a really bad "trip" when they try and come off the drug. It may well be that Xanax is one of those things you have to just take the plunge and try for yourself, with your Doctor's help and guidance to know which of the categories you fall into. Keeping my fingers crossed for you its one of the YAY! I FEEL BETTER options. For me, I had had a prescription for Xanax for YEARS before I ever took one. It was something I would keep on hand "just in case." And as long as I had it as an illusion of security, it worked just fine for me. The problem was that I TOOK IT once during a "bad spell". I can pretty much watch the ball run down hill from there. Who knows if I was already headed for the bottom of the gravel pit or if the benzos helped me to sink to all new levels of disorder. Within 3 or 4 months I tried everything the Doctor's "ordered", Xanax, Valium, Ativan and yet my surges persisted day after day. I would feel "drugged" for certain while the tranquilizer was on board, but I was still crawling out of my skin. On more recommendations by more specialists, I began taking Xanax daily ... I think I was up to four a day, but I can't recall the dose off hand. The more I took, the more off-center I felt. Within three weeks I realized that the benzos were making me more sick than before I started taking them. So I began the LONG and VERY GRADUAL tapering off process. Its a pity they didn't work better. I know they work very well for many people here. What I lost in that whole ordeal was the ability to keep something on hand just in case. Which seemed to work better as a placebo than as an actual medication before in my case. So if anyone has a new placebo to recommend ... I'd love to keep something else around that I think will help me, only to NEVER use it again. ;-)

Welcome. I'm also in SoCal and have used my primary physician as well as cardiologist to get a diagnosis and monitor my condition. Most of our hospitals have facilities to do the tilt table test. If I recall there's a specialist at Loma Linda I saw once .... but that was more than a decade ago and I can't recall his name. There are a lot of answers here on the boards, self help measures and maneuvers, medication options to discuss with your medical team and of course a tremendous amount of support and encouragement as you walk the healing path. Deep Bow. ~EM

I like to try and keep "active" no matter what phase of the moon my POTS seems to be in. There are indeed periods when I am completely bed-bound, so during those times simply stretch -- while lying on my back -- may be all I can do. As I am able, I rather enjoy doing "floor work". In my case I can do tiny ab crunches (just barely lifting my head and shoulders off of the ground) and various iso-metrics that aren't really about MOVING but contracting and pushing against my own body. My goal is to try and keep as much muscle tone as possible, given my orthostatic constraints, so that should researchers find something that helps, I will have a body that will be able to take advantage of it. Some folks here on DINET are able to Pilates, or Yoga better than a full on aerobic class. Lately I have enjoyed doing some simply pushups and leg kicks in my backyard spa -- not a good idea if you have syncope. When it comes to exercise, I remind myself that putting a load of laundry in the washing machine is the equivalent work out of a full on kick boxing class for me ... and I have to take serious down time to rest and recover after even those "simple tasks." I try let my intuition guide me (and not my judgmental-mind) as to what things I can do on any given day. Good luck finding something that works for your unique healing journey.

What I know about seafood allergies can fit inside a clam shell ;-) ... but what little I do know is that Shrimp (prawns) is one of the most highly allergy prone critters in the sea. The effects of a shrimp allergy can be accumulative, in other words you may not be allergic now, but as time goes by you become more and more sensitive. In my case it would start with just puffy lips each time I ordered tempora shrimp. However, you never know if the next time will be enough to trip a full on systemic reaction ... which it sounds like you have had. For this reason, I gave up shell fish long before I even considered becoming vegetarian. I have known chefs who work with sea food, develop serious allergies to even preparing shrimp in their recipes. So much so, that many food workers wear plastic gloves when they work with shrimp so that they do not develop this auto-immune response to this critter who as you know filters the sea water and as our seas become more polluted, so do these poor little creatures.

I live in a medical marijuana state, and if I thought it would help i'd talk to my PCP. However from what I read -- gosh can't recall where -- it would tend to excaserbate my hpyeradrenergic symptoms. So at present its not high (only small pun intended) on my list of new things to try.

I use to get BMS (burning mouth syndrome) often there is a lot on the web about it. Some say dentists are good people to try. Also hormones seem to play a role, and as I am perimenapausal that probably contributes. I read one article that suggested BMS was related to "bracing" or tongue thrusting. in my case, that seemed plausible -- so I began to focus on relaxing my jaw, lips and tongue. I also tried the diet tips I found online. Not sure what eventually worked ... but its probably been 6 months or more and it hasn't come back. Good luck finding something that works for you.

Welcome. I hope you and Kristen each have a chance to meet people and share the journey with some folks who have walked in your shoes. It sounds like answers are coming very slowly and that some of the pieces of the puzzle are falling into place. Do read up on Hashi ... both what the "specialists" say and other sites like http://www.stopthethyroidmadness.com/ that can talk from a patient's prospective about what can happen with autoimmune thyroiditis. Also any book or article by Mary Shomon ... http://thyroid.about.com/ in my opinion she is the definitive source for thyroid disease. I've had Hashi since I was in my early twenties. The problem with hashi is of course that it goes BOTH WAYS ... sometimes HIGH sometimes LOW thyroid depedning on the surge of the anti-bodies and how much scar tissue has built up on the gland. It usually doesn't go hypo until closer to menapause in many cases. Which means it can be a roller coaster ride until then. One of the things some endos do is treat the Hashi with higher doses of Synthroid (or Levoxyl) in hops to have the gland stop producing on its own. In any event, finding an Endo or PCP who will treat based on how Kristen is feeling rather than just based on her blood work alone will be a boon. Keep looking, until you find someone you are comfortable with. I wish I had "advice" on what helps, what next and where to turn ... but unfortunately this journey seems to be highly unique and often unpredictable. Best I can offer is to encourage Kristen to follow her heart, her own inner wisdom will guide her to what path to choose each step of the way. Love and support her and listen to her thoughts, feelings and frustrations. You don't need to try and "fix" anything ... though you will be tempted to try and do so and will no doubt feel helpless. Just being there to listen is often of the most value. And of course we are always here to listen too! Good luck on this healing journey. ~EM

I had tremors last year when my blood sugar was off -- google reactive hypoglycimia and see if it might sound like what you are going through. Some folks do really well on benzos and it helps their POTS as well as ancillary anxiety. I unfortunately did horribly on xanax (as well as ativan and vallium) ... more rebound shakes, panic and tremors ... and it probably took a good six months after I had slowly tapered off to rebalance again. Though at the same time I was battling the hypoglycimia and episodic thyroid toxicity from flares of Hashimoto. So who ever really knows. Welcome to the boards, I hope you find some useful information that helps with your unique healing journey. ~EM

Ahhh DINET or the Diagnosis? Which came first? Love this question. For me it is probably all in a name and the particular name of POTS that I have been given at this time of my life. In my early twenties a Doctor noted in my medical chart that I had "tachycardia on mild exertion". By my early 30's the "diagnosis" was orthostatic intolerance. I even had a tilt table test way back in the early 1990's that confirmed OI, but still no one seemed to be too concerned or offer any suggestion other than compression and salt. It wasn't until I stumbled upon DINET during one of my crashes when I was around 40, that I learned about POTS/Dysautonomia. So with a little blood pressure cuff and hundreds of data samples I could chart and see at an objective level what was going on in my ANS dysfunctional body. I showed the charts to my PCP who sent me to a cardiologist who ordered a tilt table test (2003 if I recall) to confirm POTS. But I have to say, for me POTS still seems to be only a symptom -- much like "tachycardia on mild exertion" was almost 30 years ago. As we all know there seem to be various types of POTS and though some of us have found a root cause (EDS or Mast Cell Activaton), that has not thus far been the case for me. I certainly have POTS and I am certainly disabled by the impact of a dysfunctional ANS. But without knowing what is causing my POTS ... it feels a bit more like yet another symptom rather than diagnosis in an otherwise complex web of not knowing.

Many many years ago I had my first tilt table test with someone at Loma Linda ... but gosh I can't remember his name. Sorry. Since then, my "regular" cardiologist diagnosed my POTS with a tilt table test at my local hospital. My PCP of 10 years works with me to try various protocols as he or I come across them. Good luck finding someone close to where you are who can help with the cybernetic steering along your journey.

{{{{gentle hugs}}}}}} Sweetheart. It's September!! You made it through NINE months of 2009 before you withdrew your MOTYA nomination. I usually loose my chances by February. You know if we try hard, maybe we can both blow it in January of 2010 that way we don't have to busy ourselves wondering if we are still in the running all year long. Ahhhh the joys of parenthood. You did good kiddo. Don't fret on it. What's that saying about "spilled milk"?

Ok! First things first. Divorce proceedings are full of unimaginable pain, lies, slander and "decisions" ... but none of it is REAL. You will need to keep that in mind as you hear your ex-husband trash your name and reputation over and over again. You will need to remember that when you here a judge make a ruling that is not in your favor. Divorce court is NOT about establishing what is fair and best for the children ... it's about employing lawyers and keeping them and the rest of the legal establishment well paid. Ok, now that we have that out of the way ... take a deep breath ... and know that you are not helpless here. If you had an attorney -- listen to her/his strategy for how to get back custody at the next hearing. If you don't like the strategy -- FIRE HER/HIM and get new legal counsel. You may be required to go to a court appointed psychiatrist to determine your ability to care for your kids. Look at that as an ASSET -- be yourself, you are bright, kind and compassionate and you ARE mentally grounded (even though we each feel unglued at times). Your interview as a strong empowered woman with physical limitations will be documented. We don't loose our children due to illness. Your husband is no doubt working ... who is he paying for childcare in your absence? Your attorney will make the case that hiring helP for you and keeping the children with their mother is in everyone's best interest. This is a LONG process ... full of many appeals. Things will change on a dime many times and back again. Keep the faith, even when it seems there is no hope of winning. Your perseverence and patience will prevail. And once all of this is behind you ... do your very best to leave the trauma in the past. I sooo wish, I had been able to do that for myself. Deep bow to you. May strength and hope be forever by your side as you blaze this new trial.

Of course, of course. It was MY mental story that tripped, not your reality. My hairless dogs (not to mention hairless cat) are my life line ... but that's just me. Your Zen my dear has never been in better form.

Isn't it funny where we get stuck in our own story? As I read your grace filled plan on sustainability within a life limiting illness ... I was inspired by your courage and keen insight into ways that will improve your the quality of your life. I silently bowed my head with each decision you recounted ... then saw No Pets and just stopped in my tracks and started back peddling trying to think of some way you could add a tiny furry friend back into the mix. Silly what things trip us up and reel us back into story. It is excellent that you are thinking ahead, and the feng shui of throwing away will bring amazing new opportunities into your life. I would urge you tho to GO SLOW and be mindful of any longings that may come up down the line. The rocks along our path may only seem too heavy to move in the moment ... but holding on to some dreams can give us wings to sculpt the stone in time. Let your heart have the final word.

I have recumbant bike also and like Mrs. B., it tends to hurt my lowerback despite trying various settings, position adjustments and speed. Pitty. Maybe some day ... but not for now. What about exercises that don't require an investment? I'm good at stuff lying down like ab work. Simple tools like those bands for resistance training or other isometrics, can be great for keeping in condition. If you have a wide repetoire to choose from you can mix-n-match depending on how you feel for that day. For folks who can get out and join a gym/spa, they can have the flexibility of a wide variety of machines on any given day. Its hard to get a single machine that has that kind of flexibility. That's why I like little things like free weights, pilates ball, or simple things to work specific areas of my body.

Interesting thought about Hashi and hives ... I go through episodic waves when I get more hives, could be I suppose when my Hashi is active. i'll have to make a note to watch for that. Problem is with hashimoto ... even if you HAVE the antibodies ... no one will treat for it UNTIL your TSH goes out of bounds. So you might as well wait before getting more thyroid tests. What was your TSH, did they say? I can get hives/flushing from a variety of things other than food ... bug bite, bump or bang into an object, or steam like was mentioned. I should think that with the hyperadrenergic component ... that my body is also hypervigilant about other bio-chemical changes. I.e. it tends to over-react to small variations in 'normal' hormone activity. Panic or not ... doing something to actively SLOW down what's going on is a plus. Whatever that may be. Ice-packs. Deep slow breathing with expanded belly breaths that massage the vagus nerve with your diaphram, can help rebalance a slew of body systems. Good luck finding some answers that make sense for you.

I have POTS and panic disorder for probably 20 years. For me, my health is intrinsically linked to the panic. Over the many years, when my POTS would wax and wane... so would the anxiety. Even now, when I have been disabled for two years with POTS and house bound, there are times when my body does better, and I can enjoy some time out. I use to try very hard to tackle the "panic" piece of the puzzle with literally years of cognative therapy, behavior therapy, exposure therapy, acceptance and commitment therapy, relaxation techniques, breath work and even benzos like ativan, xanax and valium. What I have learned, for me and my unique body system, is that ultimately it comes down to my physical symptoms of POTS with the range of hyperadrenergic cycles, bone crushing fatigue or intense coat hanger pain, that determines how I seem to "cope" emotionally in the moment. My PCP is aware that I see a therapist to help cope with the emotional spill over of POTS symptoms. So he is comfortable that I am addressing those issues in conjunction with my physical health. When I come to him then with a "new" physical symptom or worsening of existing symptoms ... he knows that I am on top of my "mental game" and does not brush off anything to stress, anxiety or other psychological syndrome. I appreciate that, since I know my body (and my mind) very well and I know when something physical has shifted. As for now, how do I cope with the comorbidity of anxiety/panic? First, I realize that there is an organic cause (POTS) that creates the physical symptoms and a deeply rutted patern of emotional responses that seem to follow. So I work mostly with somatic experience (SE) therapy that focuses on the ebb and flow of body sensations. Early on, I did SE to try and "fix" my body ... but seeing that that hasn't seemed to go as hoped ... I now use SE to try and learn how to shift some of those deeply rutted patterns, which for me means learning how to be "very sick" in as big of an outside world as my body can handle on any given day. Be kind to yourself. Its a complex situation and as you already know ... there are no easy answers.

Actually gluten is a high protien, low fat staple for many vegans. It is added to most fake veggie meats and it isn't a problem unless you have gluten issues. Even when my own iGg (iGe? ...) blood tests came back positive for WHEAT, (in that my body was making antibodies agaist wheat in my diet) it didn't show up for gluten alone. I do better with one of my own homemade (and amazing ;-) gluten based setein roasts than I do with take out pizza. For me, it seems my body is prone to autoimmune reactions to anything I eat on a "regular" basis. So I do well on a "rotation diet" ... where I split up food groups and eat them each once in four days. So for instance if I am eating dairy on Monday ... I might have yogurt in the morning, a cheese omlet at lunch and a cheeseburger for dinner ... but then I wouldn't have any cheese products (or eggs or whatever was in my veggie burger) until Friday. Rotation diets are particularly good if you have already been on an elimation diet and have foregone dairy, wheat, eggs, citrus, rice ... or whatever you suspect your own triggers are. One way to take a stab at it is to make a list of EVERYTHING you have eaten in the past week. Sadly for most of us ... our ingredient list isn't that long. You then eliminate those foods (or at least the ones with several tally marks indicating multiple appearances on your kitchen table) and plan a healthy balanced diet without them. I worked with my Doctor and a special nutritionist when I did this for the first time myself. It may be you are eating lentils or lamb, turnips or sardines ... but they will be "new foods" for your body to play with. After 9 months, I was able to put most of the culprit foods back into my rotation ... one at a time. I do pretty well on most anything now --- in moderation. And always maintaining a sugar minimal diet. The last 'diet' modification I made was a sweeping one last year by way of hidden MSG foods -- check out http://msgmyth.com ... she has lots of free info on what that's about. And I do believe its another thing that can help ... some of the people ... some of the time. Good luck finding what helps you ... in this moment. ~EM

I did a conference presentation on EMF and "prudent avoidance" way back in the 80's and we used an EMF meter at our office when we initially designed computer workstations. Most computers today have those flat screen monitors ... there is almost nothing coming from them by way of EMF. Those transformers on your laptop power charger are another issue. High end laser printers can also give off a good amount of EMF ... so for people who have their back up against a printer all day .... they may want to consider a different configuration. Things like an electric alarm clock at the head of your bed or an electric blanket are also things folks may want to rethink. I think the big concern these days are the cell phones. We used our EMF tester with everyone's cell phone around the office and it was amazing at the difference between them. One brand, that two of our guys had, use to spike really high just before an incoming call. It make them both OPT not to carry the cellphone in their pocket any longer. The CDC has a document on EMF and several new reports and recommendations. http://www.cdc.gov/niosh/topics/EMF/