EarthMother

Its so hard, because our systems are ultra sensitive and we probably went too long without a diagnosis that understood the complexity of our autonomic reactions. So we often took meds that were too strong, or counterproductive. I think your idea about breaking the dose into smaller pieces is a good way to handle a new introduction. Sometimes I take the drug at bedtime, when I am GOOD AND TIRED and know that I'll fall asleep soon. It's not an irrational fear. Just one that we have to approach in our own way. My doc knows how I handle new drugs so he gives me a very low dose (usually child's dosing) but then let's me titrate to see what will work best for me. Even at that, I am still very weary of anything new. I'll let you in on a secret .... I bought vitamins last week because I read that Zinc and Iron can help with brain fog .... but I've been hesitant (ok frightened, if I am being completely honest) to start taking them. I've decided that I'll open up the gel cap and empty 2/3rds of the powder and see how a smaller dose goes before I bite the bullet and start taking the two a day as recommended on the bottle. Meds have their place and have certainly done wonders for so many of us. But there are lots of folks here on the boards who are not taking any prescription drugs at this time. Don't beat yourself up too much. It's easy in our pharmacudical driven comercial media to think that if we just took this little pill all of our problems would disappear. But most of that is hype. I believe our bodies instinctively know how to heal and I hold on to the hope that mine will lead me to what is right for me to do at the right time. Good luck on your healing journey. EM

Actually it's a little wrist cuff that I use. I like these better than the big arm bands. I bought my at the local pharmacy. But if you do a google search for wrist blood pressure cuff you get lots of hits. Example below: http://seniorhealth.about.com/cs/healthpro...%20Monitors.htm See item 3 for wrist cuffs. Hope this helps. EM

FH, I just have one of those automatic wrist cuffs from the drugstore. I keep my arm bent and wrist at heart level as it says on the instructions. It has always matched my docs cuff. No questions ever asked. HTH EM

JLB, Sorry the neuro didn't work out. Though you may want to consider the cardiologist as suggested. I had the same thing happen last winter. Went to a neurologist who was "suppose to know" about these things but instead got a lecture that chronic fatige syndrome comes from stress at work or at home. Actually I think it comes from uneducated medical "professionals". :-) So the neurologist was a complete bust. But I did make an appointment to see a cardiologist that my primary care physician recommended. I spent the next three weeks prior to the appointment taking BP and pulse records. Usually three at a time. Once lying down. One standing and then another lying down. I printed them out in a table and graphs (ok, I'm obsessed with the computer, I'll admit it.) and when I took them in to my cardiologist he nodded his head and said. Yep, this looks like POTS. He then stepped out of the room, picked up his cell phone and called a colleage. I could over hear his end of the conversation that went something like --- "I have a woman in the next room who is very symptomatic and it looks like she has POTS. Are we doing anything for POTS now?" Ok, my confidence wasn't rising, but at least someone was listening to me and I felt a validation that was a long time in coming. During the next few weeks, we had a tilt table test, some blood work and at least a path we could begin to follow. I now do my follow ups with my primary physician, who is also an outstanding listener and advocate. He lets me bring in all the articles I can find on the web and we talk about options and make plans together. Sometimes it is not so much the specialist you see, but someone who SEES YOU as more than a bag of bones with symptoms. I remember once, the cardio came into my room took off his glasses and looked at me and confessed "POTS is really hard on a physician. We don't know what to do to make it better. We can try some things, but we really don't know how to help." This was perhaps the most honest conversation I have had on this journey. Good luck to you on your own healing adventure. EM

Here's a phrase given to me some time ago .... NO BLAME NO GUILT NO COMPARING MYSELF TO OTHERS NO EXPECTATIONS NO EXCEPTIONS! I have to read it over and over again, but it is certainly something to strive for. FH -- remember you are a pioneer. This is uncharted territory for us (and our loved ones) and you are doing a remarkable job educating yourself and making informed decisions. I believe some of this has to sink in through osmosis for our partners even if they don't read our posts. It's not easy to live with your head in the sand when your partner is blazing new trails through the dunes of the desert. Congratulations on your decision. You are very brave to stick this out on your own with your trusty fido by your side. Just picture them all doing the chicken dance and you'll KNOW you made the right decision. As I read all the threads and felt my own heart strings resonate with so many of the stories, I thought how wonderful it would be if we had a phone list. Sometimes just hearing a friendly voice from someone who understands makes all the difference. In any event, its so good to have this board to turn to. Many thanks to all that support this site. EM

Big hugs to you FH. I know the decision is taxing. You are so amazing to keep on keeping on. I love the ideas of the pillows. This does sound very appealing. My husband wants to take a drive to a coin show this weekend. Probably just under 30 minutes away ... I didn't make it last weekend when we tried. But I'll bolster myself up with pillows and see how far I can make it. The new chair I bought at work, has a recliner foot pop up. It puts me in that same back tilt that works well for me. It's not always 100% perfect but it gives me the best odds of making it a go. Good thoughts your way as you still your mind, look deep inside your heart and decide what to do for your RSVP. I am resonating with you. EM

Good timing for me FH. I've been beating myself up all week because I am on "vacation". And ofcourse we are staying home, because I just don't feel up to traveling. I also have a wedding invite, and mine is only an hour away but the thought of the trek and day's activities makes me feel weak in the knees. Even a 30 minute trip to Toys R Us this week (to buy presents for my little one's birthday) took me three attempts, and this was WITH my husband driving. I know part of it is my POTS and part of it is anticipatory anxiety that I'll have a dyautonomia problem and be "stuck" somewhere. Ick. It's hard not to hate this. It's really hard not to hate ourselves for not being able to do "simple" things. My heart goes out to you. Gosh I better go check my spice cabinet because it looks like I'm all out of sage advice for the day. I'm starting to even depress myself ;-) Good thoughts. EM

Thought I'd share a "what works" tip with anyone who spends time in front of a computer. Though "proper" ergonomics say to sit with your spine straight and feet flat on the floor .... with my POTS I need to be leaning back slightly and have my feet raised in order to minimize my symptoms. Last week I found the perfect reclining office chair with built in footrest. http://www.onewayfurniture.com/preblexreofc.html It arrived today and I really love it. The footrest is manual (you have to raise it up and down with your hands. But I keep it in the up position with my chair tilted back. This combined with my wireless keyboard is ideal. Good luck on your journey. EM

I have goosebumps all up and down my legs. I can literally feel my body resonate with your victory! Hip Hip Hoorey! Congratulations dear Pots friend you give us all hope for the future!!! EM

A few years ago, while being tested for food sensitivities we ran the Candida blood analysis and I was off the charts (very high.) Immediately we did a short round of the nystatin and then I did the anti-candida diet. No fruit, no sugar, very little carbs in general. I stayed on a VERY STRICT regime for about 6 months and when I was tested again, my doctor was amazed that there was no sign of active candida in my blood work. Since then I've repeated the test a few times and gradually brought back fruit and minimally sweet treats. The Yeast Connection by Crook was the most helpful resource I found. There is also a cookbook based on his work. http://www.yeastconnection.com/ Over the years I have adopted several recipes for low sugar (no wheat, no dairy) cooking. You can check out my web site at: http://coolkarma.com/Foods/index.html Good luck in your journey. EM

Welcome the sisterhood of women with short easy to care for hair! I joined the club also this month after a much too long sabaticle. I also donated like Meghan to Locks of Love. I was surprised by how pain free it is to have really short hair. Even gentle little tugs on a collar or sweater really adds up through out the day. And at night, I can toss and turn to my hearts content without getting a face full of hair. It has made a big difference in my life. Congratulations and welcome to the short hair celebration club! EM

I've just placed an order for 2 neck cobbers! I've been wearing a device from sharper image this week around my neck and I look like someone from StarTrek or a mistress from an S&M lounge. Thanks everyone for the tips!!! Stay cool. EM

I'm with Lorrell! Cheers to a good day ;-) I tend to get palpitations if I have been standing for a while and then sit or lie down quickly. I like everyone's suggestions about pace, and slowing things down. Maybe this is why this works so well for me and my husband. We tend to lie together for a really long time, with just very slow gentle touching. Which eventually leads (or not) to a very slow session of love making. Either on our sides, or me on top. Oh and it has to either be really early in the evening or when the kids are napping on the weekend. My system would break down if I tried to stay up late for romance. On the few times I've done this, I tend to tremble and collapse afterwards and feel sick the next day. So much of intimacy in a relationship happens outside of the bedroom. I often tell my friends (who don't have POTS just low/no desire) to focus on some of the cuddling and quiet times with candle light or soft music instead of more physical activity and let your partnet know what you do and do not have in mind. Good thoughts. EM

Having to get up at night 2-3 times and leave meetings every time I take a drink was one of my challenging symptoms. And for me I think the rapid weight loss when I go through a crash is/was related to the fluid loss. I gave my doctor a listing of all the drugs listed on this web site and we decided to try the easy ones first. (easy is of course subjective and some things work for some people etc.) For me we opted to try the DDAVP. This is considered very safe and is usually given to little ones to help with bed wetting. There have also been long term studies with diabetes patients and there were no long term effects -- however, I think it is the liver or kidney that you have to check every now and again with a blood test to make sure things are as they should be. I started taking the smallest dose of DDAVP in December ... and what a difference it made! I could sleep through the night, go to meetings and not worry about having to take a potty break. I opted to take the pill form, but it does come in a nasal spray as well. Once I had re-gained the weight I had lost in the fall (from a bad crash that lasted several months) I vowed to try and taper off the DDAVP and see how things go. I did try this once already this summer, but I think with the heat it may not have been the "right time" to tackle the fluid volume issue. So I am back on it and will wait until the fall to see if my doctor and I want to try and wean off of it yet. But so far it's been WONDERFUL. A short blurb on DDAVP is found on the DINET site: http://www.potsplace.com/what_helps.htm Good luck on your journey, EM

I simply can't function when the temperature gets up around 100. I carry a little spritze bottle of water that helps in the car (even when the air is on) or on the short walk from car to building. But things I would do in the winter (like support hose) are out of the question in the hot days of summer. I can't tolerate any additional clothing. I dropped 6 pounds in 5 days this week. So I know my body is shutting down. I think I am forgetting some of the basics (like adding more salt -- DUH!) What tips do you have for beating the heat? Thanks, EM

There are documented cases of spontanious healing for every disorder that has been diagnosed. So why give up hope? It could be you. In fact what if you imagined it was you ... right now. Imagine yourself back up at full pace. Keep those images in your mind for as much of the day as possible. What I've learned through this is that even though my "doctors" have not always been able to find the cause or cure .... my body eventually worked out a way to improve. Our bodies can heal. I love the expression that the wake of the boat does not propel it forward. And indeed we are not defined by the illness of our past. It doesn't matter how long we have been ill, we are right here, right now and the possbililities are limitless. For myself, I've known people who have improved dramatically, who have returned to work and led full lives. Some, like myself, have experienced periods of down time now and again. Sometimes for days, sometimes for months one end. Most of the time, I do recognize a "turning point". Not that I can jump up and run a race, but a feeling somewhere deep inside that confirms there is a light at the end of the tunnel and that I will emerge from this abyss once again. We define for ourselves what recovery means. And while no one can tell you for certain that you will return to your remembered self ... most of us will tell you with confidence that you will improve. And should you become that famous doctor one day in the future .... you will have a line around the block for patients wanting to learn from you about hope and healing. Good luck in your journey, EM

Sorry about the frustration with the TTT. It seems your path is to enlighten those you encounter and it sounds like you are the perfect person for the job. Sorry if this wasn't the job you were looking for ;-) and geniune empathy your way, for I know how hard this is. I remember talking with folks at the heart math institute years ago. ... I think there is something more here than traditional "relaxation". Goodness I am the guru of relaxation techniques, and I know it is not sufficient to overcome this disorder on their own. But what science is finding now is the neural plasticity of the brain and how the mind/brain can work to physically change neural networks in our bodies. I think the heartmath institute taps into some of these ways we can "reprogram" our autonomic nervous system. I've been doing some Somatic Experiencing work and other "bodywork" that involves eye movement that crosses the left/right brain channel through a licensed MFT who has specialized in this field. It's cool stuff and I think beyond all the cognitive or behavior therapy I've tried, the concept of actually reprogramming the neural networks and in some way healing this deep trauma that our body has endured sounds promising. At the very least it's something interesting to try. Good luck to you on your path. Thank you for sharing with us. We each learn so much through the travels of our POTS penpals. EM

Thank you so much for sharing your story and your sucess in being able to be part of the wedding celebration. The wonderful part for me is how well you knew your body, your ability and your limitations and most of all it sounds like you don't waste time beating yourself up about "what is". We all have a lot to learn from you. I can tell it is June from everyone's responses and the flurry of weddings planned. As for me ... I missed my dear friend's son's engagement ceremony earlier this month. It was a very special hindu ceremony and my husband and I were so honored to be on the guest list. However, it was one of those hot days ... we were driving only 30+ minutes from home .... but somehow among the heat, or the unknown of it all ... I just couldn't make it. I asked my husband to first just pull off the road. We were maybe only 5 miles away. But after crying in the car for over an hour and being so angry with myself (my husband and the world) I realized that it just wasn't going to be possible. Not that day. I felt just awful. I felt I had let my friend down. And it has taken me a long time to let go and just move on. For whatever reason .... there are good days and there are bad days and there doesn't seem to be a crystal ball to predict what kind of day it will be. Good thoughts to everyone and much gratitude to all in knowing that each day we are not alone. EM

Most of my really bad POTS episodes seem to be correlated with rapid weight loss. One of my cardiologists back 5 years ago -- when they called it OI instead of POTS -- said that this was common for models (tall thin frame). I am 5.5 and feel good around 125-130, however there are times when I have rapid weight loss (unintended) and drop down to 110 or less within a week or so and then I pretty much have a total POTS crash. The saying "You can never be too thin or too rich ......" certainly isn't the case for us. Ok, maybe just half of it. I'm still waiting to test out the latter clause. EM

Dear Blue, There ARE people who recover ... unfortunatley most don't come back to the boards to post their long term success stories. Since there are so many different forms of dysautonomia with so many different "causes" there are also so many different prognosis so yes it is hard to say how long it will take, how complete your recovery will be or what the future holds in store for you. Most of us get frustrated with our doctor when they say that there is nothing they can do for us and that we will not improve ... sounds like you have an excellent doctor who is convinced you will recover. Trust her/him. Knowing that you will improve and be able to accomplish your dreams is at least 50% of the winning formula. You may want to pick up some books on people who have recovered and are sharing their story on how it changed their life for the better. Listen to your heart, see what is calling to you. It may be law school, or it may be something that no one in your family has done before. Consider yourself a pioneer on this healing journey. Good luck to you on your travels. EM

Sorry you missed the zoo trip. I know how much I've missed the zoo with my kids as I have been living through this medical zoo safari. I know you must wish you could just get out of this jungle and back to some semblance or normalcy. I find with some doctors even ones that were wonderful for many years, that it becomes time to move on. Seek out new faces and other healing paths. On my journey I have found wonderful healers among them have been accupuncturists, chiropractors, massage therapists and even a pranic healer. When money is tight (and when isn't it) I stock up on healing books. There are wonderful healing stories out there .... one day yours will be among them! Remember the wisdom inside your own body. It can and will heal -- even if and when the doctors don't return our calls. Keep the faith, EM

I have gone out on short term disability probably 3 or 4 times each for a period of about 6 to 10 weeks. My employer has taken care of everything for me -- guess there must have been people like Aprilmarie before me paving the way for it to go smoothly for me. :-) Your benifits office should be able to handle the paperwork since short term disability insurance is something the company and/or you contribute to as part of your benifits package. Keep good thoughts, tell yourself that nothing can be taken away from you that you rightly deserve! Just repeat that as a mantra in your mind when you have to face "the boss" or the other people sticking red tape over every door and window. EM

Thanks for sharing. Good luck with this new doc! I read lots of literature on cortisol a few years back and it did look promising for CFS. Unfortunatley my endo didn't think much of it at all so it was a dead end road for me. I think that article Jackie posted on the Hypothalmus-Pituitary-Adrenal axis is a good theory on why something like cortesol works for some of us (some of the time.) How is work going? Did you go back? EM

How many milligrams in that 1/4 tsp dose? I take magnesium to help keep my heart from skipping so much and take anywhere from 400 to 800 mg a day. However I take it in small 200 mg doses spread throughout the whole day. EM

My mother bought a barameter for my husband for Christmas .... so he would be able to gage when I was going to be having an extra hard time!! Wish I had some advice that could help. I just try to lower my expectations on "down" days. EM