EarthMother

The last work I had to have done was a two surface filling. I saw that as if I know what that means, but I have no clue. I began to panic when they put the topical ointment on my gums .... it's that feeling of not being in control that I can't stand. I stopped the procedure and spoke with the dentist. I told her I wasn't afraid of needles but I really didn't think I could go through with the meds .... she told me that in her home country (Korea) she always performed dental routines without any pain killer. It was just too expensive. I was shocked to hear this because I didn't think it was possible. So I asked her to tell me more and then asked if she thought I could try this. Her assistant turned pale and said NO the filling is too deep. But the dentist gave her a quick and sharp look that silenced any further objections. The dentist explained that we could try it, and if the pain was too great, we would stop and take a break. What she did in essense was put the locus of control back in my lap and I think perceived control is a big part of problem. I can't say that there was no pain .... but the pain was tollerable. She worked quickly and afterwards I felt amazing. No lingering effects of the numbness, no POTS collapse. Now I'm not saying this would work for an extraction ... each of us are different. But establishing control may be something to consider. What can you do to keep yourself in the driver's seat? How can you negotiate the treatment so that you feel you have choices you can make? Good luck on Thursday, I'll keep a good thought for you. EM

When my doctor filled out the form for me to have a "handicap" parking tab and he put down "perminent" instead of "temporary", I was crushed. I thought we were both giving up on my recovery. Instead, I realize it is only paperwork and the day I recover I can tear up the parking placard. I refuse to give up hope, and on my "good days" I just don't use my hang tag. Ask yourself .... can I work now? If the answer is no, that is why the disability system was set in place. SSI will not grant anyone benifits until they pass a very rigorous screening test. So if you pass, then know it is not because you are cheating the system. The system was designed for just this purpose. When you recover, you can contact the benifits office and say "Stop my payments!" And they will gladly comply. Each of us here are charting new territory -- we are the POTS pioneers. As we make our way through the medical and insurance systems we educate people so that hopefully the path will be easier for all those that follow. Good luck in your journey and thank you for paving the road. EM

Since I was in medline anyway ..... Here's another article that looks very interesting on CFS and the Tilt Table test: http://www.ima.org.il/imaj/ar03nov-11.pdf I think the end result is that the researcher proposes midodrine. One more piece in the puzzle. EM

Here's another link I saw on Lerner .... http://www.immunesupport.com/library/showa...artin%20Lerner/ But the research is from a few years back. The most recent study I see is in 2002. Here's the link on MedLine: http://www.ncbi.nlm.nih.gov/entrez/query.f...0&dopt=Abstract "This study was designed to determine safety and efficacy of a 6-month trial of valacyclovir in single-virus Epstein-Barr virus (EBV) persistent infection." Something worth noting since I always test positive for EBV. I'll follow up with my cardiologist. Thanks, EM

For me, I only want to check my pulse, now and then and I don't need the type of constant monitoring that expensive watches with chest straps provide. So I settled on a small device that I can put my finger on and take a quick look at what is going on. The model I purchased was from Tanita and was less than $25. http://www.tanita-scale.com/cardio.html Good luck with your research, EM

No matter how long, I've had this I still can't seem to gracefully accept the "bad days". And perhaps it wouldn't be so bad as long as they came with some kind of disclaimer like: "This is a test. This is only a test. For the next 24 hours you will be unable to stand reliably, go to the grocery store, cook dinner for your family, or in any other way function as a normal productive member of society. However, by tomorrow you will feel a bit better and resume your limited capacity functions. Thank you this concludes the test of the POTS emergency channel." The thing is, I never know how long the down period will last. I never know how far down I'll go until I've hit bottom. The uncertainty, the unpredictability, the groundlessness of it all can be unbearable. Today was a bad day. My husband and I tried to get out for a bit to do some quick grocery shopping. Two aisles later I was asking for the keys to the car with tears in my eyes. As I walked slowly to our parked car, I saw an elderly couple (maybe 70+ years old) gracefully putting the bags of food into the back of their car. It seemed effortless. I sunk into the passenger seat and just wept. How can I be middle aged and unable to do simple things. What on earth will happen to me by the time I am in my senior years? Or do any of us ever reach "old age"? It was a hard day. And not knowing if this is the beginning of a really bad spell, or just another blip in the POTS adventure is perhaps the hardest part of all. Thanks for letting me share the potholes on the path. I know many of you understand these feelings. EM

If applicable it could help disability claims or health insurance etc. I'm not an expert, but I read that one of the tests they look for to "qualify" for things like Chronic Fatigue Syndrome was a positive Tilt Table Test. EM

I remember the first time I noticed this too ... I was having a really bad POTS spell and had been doing poorly for a couple of months, then I noticed how large my veins got when my arms were lowered. I also rushed to call the doctor -- my doctors told me the same thing -- pat on head -- don't worry little girl. Actually I still notice it happening every now and then, but without the pain and usually without the heightened awareness. I think sometimes our bodies go through these periods of heightened sensitivity when even "normal" things make us feel uncomfortable. My own theory is that our minds are working SO hard to try and piece together why we are feeling so incredibly lousy that we begin to become aware of subtle and not so subtle changes in our bodies that before may have gone un-noticed. During our "bad" days, we find it very difficult to live inside our own skin and on our "good" days we may not even notice the puffy viens and throbing hands. Good luck to you as you search for your comfort zone. EM

Dear Kari, My heart goes out to you (no pun intended ... ok, maybe a small pun:-) I read in your post that desparate search for answers and the sinking feeling as we come up empty each time. I am so sorry dear, big hugs to you. I wish I had some wonderful sage advice to offer. But I know the miasma you are wading through and I know there is no wisdom that will illuminate your path. However, it sounds like you are following your heart's intentions. You are listening to your body and seeking answers to your bodies questions. Never give up hope that there is help out there and that you will find it on your journey. On the same hand, know this ... that even when we find closed doors and dead ends within our expert medical system, that the wisdom of our own body will not be denyed. Healing is possible, even without a doctor present. Do all that you can do, all that you are doing ... but at the end of the day know that your body is healing. Your body can heal with or without the answers from anyone on the outside. Have you ever had a "stress test" at the cardio's office? You mention a holter monitor, but have they done a tread mill test as well? Sometimes the latter can be interesting/informative. Good luck on your journey, EM

Thank you so much for sharing the good news with us!! EM

Good Qi (Chi) your way. EM

I have tinnitus started in the last couple of years I think. I notice it most when it is quiet in the room. Doesn't really bother me much. Compared to my POTS what's a little ringing to pass the time. My dad has it as well ... he actually got it tested and now knows the pitch of the ringing. Isn't that a kick .... I can name that tune in 3 notes! EM

Another thought on the BC pills .... I decided once I hit 40 that I wanted another option and fortunately there is a new brand of IUD on the market that is coated with progesterone. http://www.mirena-us.com/ It is unlike the previous generation of IUDs that caused heavy bleeding etc. Because of the coating it greatly reduces your period (much like the BC pills) and for some women it actually stops any noticable period all together. You can keep it for up to five years. Major drawback is that this brand at least is only recommended for women who have had children. Something to do with the elasticity of the uterus I suppose. Anyway it may be another option if you are looking for options. EM

I do. My health food store also only carries the aloe vera straight. However the stuff tastes .... really bad. Perhaps you can buy some papaya juice at the market and mix them together. Here's a web page on the benifits of Aloe vera -- alone. http://www.naturalhealthmarket.com/aloe/aloejuice.htm About a dozen years ago I was taking tagament and donatol on a regular basis for my IBS. Then my chiropractor friend asked me to try the aloe papaya juice. I started taking about 2 ounces before each meal and within a few months I was off the meds for good. I still keep some on hand (it lasts forever in the fridge) and when my kids have upset tummies or I am feeling a bit "off" I take some and it helps. I buy a brand that we have in one of our local stores now ... but when I started I bought it from New Spirit Naturals -- below are some links if you are interested. http://www.newspirit.com/products/superfoods.asp http://www.natwayhealth.com/20/207.htm?464 http://aloelife.com/ezStore123/DTProductZo...sp?productID=11 Good thoughts, EM

Sometimes I find that a shot of aloe vera - papya juice helps. Some health food stores carry and I also hear that places like Trader Joes (regional) and Costco also have begun to carry gallon sizes. Keep it in the fridge and try 2 ounces at a time. For me it's very soothing. The papya helps the stomach enzymes and the aloe heals the tissue. Good luck dear. Hope this passes soon. EM

What often amazes me is how each of us has become so knowledgeable in this strange world of acronyms and lab tests. Collectively I should think we know more than any single medical specialist living today. In some way our bodies have "failed" us and we begin our long and determined search for answers. We must know why ... because we must recover. I say this not to criticize the process, for I am also a pioneer and for whatever reason this is our path. I am grateful and indeed blessed to have found so many people who share this journey. Two thoughts come to mind as I read the posts: First, keep searching; never stop until you find what you are looking for. But remember even if/when we become an enigma to the ?professional medical system? ? our bodies can heal even in the absence of an answer. Next, I agree with debabob, thyroid disease is for more complicated than I think endocrinologists even realize. Did you ever wonder ?why? you were hypothyroid? Did they give you an explanation? Our thyroid gland does not expire it is designed to produce bountiful and balanced hormones throughout our lives. If it is not, something is wrong. We can pretend to compensate this by loading up on synthroid and making our TSH tests look ?normal? ? but at the root cause, something is out of tune in our body. Even when our lab results look normal, the fleeting storms of a thyroid gland out of tune can cause the body to experience rapid and irregular pulse and the mind out of shear confusion to plummet into a panic attack. I have POTS (confirmed with multiple tilt table tests), I have autoimmune thyroid disease (confirmed by multiple lab tests and procedures) ? can?t say one is the ?cause? and the other the ?symptom? can?t say that panic disorder is a symptom or the root at both or none of the other physiological indications. On ?good days? I am content to just let each piece of the puzzle be what it is ?. On ?bad days? I exhaust my mind trying to figure out what I should be doing to make this all go away. I wish you much luck on your journey and many good days along the path. EM

Thank you SO much. I could not imagine a better way to start my morning. EM

Panothetic Acid and extra Magnesium are on my bedstand. I probably take about 500+ of the Panothetic Acid and up to 800 MG of the Magnesium. EM

I began adding omega-3's to my diet about a month ago after reading an article about Chronic Fatigue Syndrome and brain cells. Something about the fatty acids being needed for transport or something .... gosh I guess it hasn't helped my memory at all :-) But I DO feel better when I am taking omega 3's. As a vegetarian my choices are limited. Flax seed oil is the highest non-fish source and walnuts are pretty good as well. If you are interested in trying it ... start slow and work your way up and see if you feel a diference. Good luck! EM

Below are a few links for support hose. The real expensive brand name is JOBST and they come in light, medium and Oh My Goodness How Do You Ever Pull These On! http://www.supporthosestore.com/ http://healthylegs.com/ http://www.brightlifedirect.com/ http://www.supportplus.com/ http://www.medicalmailorder.com/ Each company also seems to carry a "generic" and other brands of support stockings as well. Try as many as you can afford (they last a long time but they are really quite pricey) to see what brand works best for you. Doctors usually recommend full leg instead of just knee highs. My personal preference is thigh highs because I hate tight things on my waist. As for water ... that's a whole lot of drinking. My docs don't push water other than what I do normally. I've tried heavy duty water before and as Futurehope mentioned I flushed out my electrolytes and got much worse. I then tried Gatorade for a year or so and ended up with systemic candida -- I think it was the sugar content. So now I take salt tablets and drink a moderate amount of water each day. Other folks on the boards drink quite a bit more and it works well for them. Just like pantyhose ... one size doesn't fit all! Good luck on the new Doc and thanks so much for sharing such good news. EM

Hugs to you my dear. Know that you are among friends who care and who understand. Don't ever fret about venting among your extended POTS-family. I actually have had dramatic differences in my meds when I've changed brands (including generic to name brands). The inert ingrediants are not regulated and some of us do have different absorbtion abilities. But even so, your body will adjust it may be having an extra hard time making this adjustment. As for the panic, it sounds like you are doing all the right things. Catching yourself (even if it is 500 times each day) and re-focusing on your breathing. Remember even when POTS triggers our panic episodes we can help bring ourself back into step if we STOP and focus on our breath. Check to see if you are breathing through your chest or your tummy. Ideally we want to shift our breathing to our abdomen. With long slow exhales. Recognize your "what-if" mental scenarios that you go through over and over and STOP yourself when you see your mind start to wonder down that same path. Come back to this MOMENT. This tiny moment. Right now. Right now (take a deep breath) recognize that you are breathing. Right now. It is ok. You may notice that as you begin to take big long sighs with slow exhales, your baby will begin to also slow down and feel that new sense of calm eminating from you. I know it's not this easy. How could we want to be in the NOW when the NOW is so terrible? I struggle with this a thousand times every day myself. Many days I think I am losing the battle. I feel too sick. What did I do to bring this on again. I lost another 2 pounds. How am I going to make it to the doctor. What if ..... It's easy for me to go down that well worn road. Deep breath. But as I am able to focus again on just this tiny moment, and breath deeply I can ground myself (even if only for this instant) in a place that is spacious and free from the noise. Be good to you. You are an amazing pioneer. EM

I've tried calcium off and on for years and can't really say why it seems to make me feel worse. Even non-dairy sources of calcium supplements seem to be problematic. If you are dairy sensitive it is still possible to get the calcium you need but you'll need to be tricky about it. I am vegetarian, so things like canned salmon with the soft bones is out for me but may be a good alternative for you. Here's a web page that lists other high calcium foods: http://www.bcm.tmc.edu/cnrc/consumer/archi...s/non-dairy.htm It will be interesting to hear what others have experienced with calcium supplements as well. My intuition tells me it has something to do with our basic electrolite composition ... salt and thyroid tend to be related, so maybe our parathyroid and calcium balance is all mixed up in that somehow. Good luck, EM

Thanks ma'am!

I'm also a member of the fan-please-club. My family has a history of early and really LONG perimenapause. So I figured at 41 it was just my time. But maybe it is part of the POTS long list of party-favors. Something to think about. EM

Michelle, I read in one of your posts you knew of a doctor in California who is doing some research on dysautonomia and mitochondrial disease, do you have his name? Anyone else know of anyone on the West Coast who has heard the word POTS before? It seems like most of the research I read about is back east. Many thanks! EM