Gena

one half of .25 mg of Klonopin before bed small dose of Xanax once in a while during day if having a lot of anxiety/adrenaline feelings Celtic sea salt with water first thing in the a.m. and another glass of H2O in the afternoon with salt Drinking plenty of water throughout the day and some with Gatorade Avoiding sugars and refined carbs, caffeine and alcohol Exercise 3-4 times per week (combo of pilates, yoga, weights and aerobics) Meditation, prayer and visualization techniques Having an excellent cardiologist that understands what I'm going through (Dr. Kusumoto at Mayo in Jax) Tried Midodrine and Toprol XL, but they did not work for me.

If I'm going through a really good phase then I can manage one glass of wine, but if I take just a few sips of alcohol when I'm feeling bad, I get low BP and arrhythmias. It has to be a rare window of opportunity for me to be able to drink. Just one of the many things I've had to give up due to POTS....but I'm glad you are able to find some relief by drinking a beer now and then. Hey, whatever works, right? Gena

I get BP crashes more often lying down at night than at any other time of the day. My cardio says, I'm an interesting case of "nocturnal" POTS. This isn't a real medical term, but just something amusing he came up with to classify my symptoms. The late night BP crashes sure interfere with my beauty sleep, that's for sure! Gena

I get this VERY OFTEN. My heart stops or gets a funny beat, it feel like a wave or roller coaster motion in my chest sometimes. Sometimes I just feel that my heart stops, I jump awake and I feel really weird, like I'm half alive and half dead, (i know that sounds strange, but it's like my body is suspended in time) and then my heart will suddenly start racing like crazy. It's very scary and I always wonder what causes it to do this. I'm going to mention it to my cardio this week. I'll let you know what he says. Gena

I'm so glad you found us Shannon. I know I felt a huge relief when I found this forum too. The information and friends you will make here are invaluable. Some of us come and go or may not feel like posting all the time, but trust me, you will find ample support here whenever you need it. As far as having trouble explaining POTs to people, you may want to order some POTS brochures that were produced by members of the board. They present POTS in a simplified manner that's easy for anyone to read and understand. The brochures are great for friends, family and even doctors. I hope there are still some left. Does anyone know if there are?? Each member gets a dozen free. Here's the link to order them... http://www.dinet.org/memberbrochures.htm Best wishes and welcome! Gena

I am very sorry you are being treated so unfairly by your friends and family. I know it can be so frustrating that you just want to scream at them. I find it so hard to explain to my family what I go through on a daily basis. I basically gave up trying to get through to them. I just wanted you to know that you are in my thoughts and prayers. I hope your disability comes through sooner than expected or that you find a loving family member or an "angel" out there decides to take you in and help you out as long as you need it. Best wishes and healing thoughts, Gena

Just a thought, but maybe we can do something as simple as move the "Help Yourself to Common Questions" to the top of the pinned list and perhaps change the title to "Frequently Asked Questions". Also consider putting a link to www.dinet.org at the top of the page, that says "many of the mechansims, treatments, etc. of POTS are explained on that website. If you're new to the forum, you may want to review that site before posting your question." As a side note, I still have problems with the search feature even after reading the help section. I am not sure how to get it to search for multiple words that may not be right next to each other in a post. I have tried different technqiues to search for a post with specific words that I know are in there, but it always says 0 results found unless I do a very basic search for one word. I am probably doing something wrong. If someone is an expert at this, please educate me! . It doesn't say whether to list with commas in between or in quotes. Any help would be appreciated. Or perhaps detailed instructions could be listed on the search page. Thanks.

I like this frequently asked questions idea. And Steph37822, I like your idea about adding some simple instructions for new people. Something basic that catches your attention when you get to the home page that says... "Please search your topic first before posting your question. You may find a wealth of info and answers have already been provided about your topic/question. If you don't find the answers you're seeking, please feel free to start a new topic or add a reply to a previously posted topic that you still need more info about." Or something to that effect. I think some tips on how to search would be great too. Maybe those are already posted somewhere, but I haven't seen them. Anyway, I realize the Q&A section might take a while to put together as it could be time intensive. Perhaps the answers could be kept fairly brief, but also post links to the websites for additional info. I don't think some of the newbies realize what the pinned section is for and may not look there first before posting. Perhaps we can make this section stand out more? I don't know, just a thought. Gena

I developed anxiety when I got POTS. Never had anxiety issues before. A great book that helped me understand dysautonomia and its often associated anxiety is "The Mitral Valve Prolapse Syndrome/Dysatunomia Survival Guide." by authors James and Cheryl Durante. It provides a lot of great insight, tips, advice and personal reflections by others with dysautonomia. Even if you don't have MVP (which isn't always picked up on an echo), this book provides great info for anyone with dysautonomia symptoms and offers advice on dealing with anxiety and panic. I go through phases too, of feeling anxious and jittery and having adrenaline rushes, then I can go for months at a time without them. Just gotta love our strange and wonderful bodies!! Gena

Happy Birthday Nina. Hope it was grand. Wishing you all the best! Gena

Hi there and welcome! I agree with everyone else. Your symptoms sound very POTS like, but worth getting the TTT. Although, I must tell you that I was so filled with anxiety during my TTT that my heart rate and BP stayed elevated before and during the test, so my TTT actually did not indicate POTS. However, I've had a POTS dx confirmed by Mayo and the Dysatuonomia center at Birmingham. Your symptoms sound almost exactly like mine, except my BP can run much lower. My POTS, I believe was mainly triggered by a job offer and stress of moving across country away from friends and family. Although I've had on and off POTs like symptoms since getting dx'd with celiac several years ago, I got full blown POTS when I came under stress from the possibiltity of changing everything in my life. I did not go through with the job or the move because I became so ill with POTs that I couldn't do anything at the time. I imagine all of the stress from your sister's death and your brother's illness helped to trigger full-blown symptoms. Anxiety can also be a normal part of the POTS syndrome for many of us...I never had anxiety problems before POTS. I take 1/2 of a .25 mg Klonopin at night to help me sleep. When we have attacks at night, it can make us afraid of going to sleep or waking up during the night. Eventually you get past this though! I was recently prescribed .25 Toprol XL also. It made my HR and BP too low. I was really hoping it would help with arrythmias but it didn't. Later I was prescribe Proamitine (midodrine) by my cardio at Mayo. It did nothing for me, even when I upped the dosage. Now I have not tried the two meds together, which many doctors do prescribe them together to counterbalance the BB effect of making your BP too low. I do not like taking meds either, but sometimes I get desperate enough to do so! It's really in your best interest to try the meds, because you could regain your quality of life. If the anxiety is adding to your symptoms, then you may want to ask your doctor about taking Klonopin or xanax on a temporary basis or even a natrual herbal supplement to calm your nervous system. Best wishes to you! Gena

I won't even try to give advice about whether you should follow your heart and do what you think is right - whatever that decision is... (that's what I would do ). However, I also know that stress, either acute or chronic, is one of the biggest, single factors in my POTS flares. I simply don't handle any kind of stress like I used to, pre-POTS. Moving, a death in the family, changing jobs, getting married etc. can be stressful on healthy people and it can really takes its toll if you have a chronic illness. One of the best things to do is plan ahead and prepare as much as possible if you do decide to move into together. This will help make the transition smoother and easier. And of course you may want to consider doing what you can alleviate the mother-in-law stress, especially if she plays a big role in your boyfriend's life. Also, conisder that if you both have chronic illnesses, will you be able to provide the emotional and caregiver type of support that he needs and vice versa, especially if you are both feeling badly on the same days? ON the bright side, you will probably be able to empathize with one another much more so than if you had a relationship where the other partner is completely healthy. Well, I'm rambling, but I did just want to say that stress can definitely influence POTS flares, so be careful, take it easy and do whatever possible to make the transition easier on yourself. Gena

I noticed that you are not taking any meds, but I was wondering if you're doing anything for fatigue thorugh diet and/or vitamin or herbal supplements? I would avoid sugar, as this stresses the adrenals and can cause fatique. A good B-complex vitamin helps with energy and proper nerve transmission. Ginseng or astragalus are adapatogenic herbs that provide energy and support the body in times of stress. Eating some quality animal protein and six small meals a day can help fight fatique as well. Also, are you able to do any floor exercises? Well these are some of the basics. You may already be doing many of them. If you have chronic fatigue there are several formulations of herbs on the market designed to boost and support your adrenals and provide you more energy. Licorice root is often taken for the adrenals. Of course it's always wise to discuss your options with a health practioner first! Hope you find a solution that works for you! Healing hugs, Gena

Ann and Finnette...I noticed you mentioned blood tests for the catecholamine (sp?) levels. I had a 24 hour urine test at Mayo. They did not mention the blood test at all. Oh well, at this point I'm so tired of tests, I probably won't pursue that one. I guess my question is if you know you have hyperadrenergic version of POTS, wouldn't the treatment be slightly different and more specific than just the general therapies? At least you know which substances are too high or low and what was throwing your body off kilter and how to approach it? Well, maybe that's wishful thinking...but I've been in a bed spell after being in such a good phase for so long, so it's really disappointing to be back in the hole for so long. Emily, thanks so much for your post. It's always good to hear from you too. I know you've been in the hole for a very long time. It seems like your are having some good or better days at least. As far as my moods go, I don't really express them, they are more internal mood swings and I don't express them to anyone - well my hubby sometimes. I go from being calm and happy and thinking "yes I am strong and I can get through this" to "oh my goodness I'm going to die of a heart attack or stroke" or "my life just plain *****!" and then shortly after i can be all happy and calm again I kind of agree with you on the hypermobility thing too. All of my doctors have been so quick to point out my flexibiltiy, but I am not as flexible as say someone with EDS might be. Yet, there are a lot of flexible people in the world without autonomic issues. Well I'm rambling now, so better run! Gena

I have many many days where my breath does not come normally. I feel likes it's on manual instead of auto....like I am constantly having to remember breathe in and breathe out. I often can't find a proper rhythm and I feel like I'm not getting enough air. Sometimes my heart gets out of rhythm for a few seconds because my breathing is so wacky! I hate this feeling of having to think about breathing!! Gena

Blackbird, From what I hear, saliva testing can be very accurate and beneficial, but it depends on the test and the testing lab. Some saliva tests are not accurate. Let us know how it goes! Gena

Sorry to get off topic a little, but just wanted to mention that I have the biofeedback software game Wild Divine as well. I like it a lot. I haven't finished it yet though. I do have to say that it has taught me a lot about breathing and heart rate and how to better control these things. However, if you're feeling POTSY or having an off day, the game can be frustrating. Well, at least I get frustrated with myself because I can't make my body do what it needs to know matter how hard I try. But overall I like the game and enjoy the graphics, the music and the biofeedback challenges! Gena

Sounds like you had a really rough Thanksgiving day! Try to do everything you can to take care of yourself between now and your surgery. Get your body prepared and in the best state you can. You may want to try some meditation or just being in a quiet room to collect your thoughts. I am keeping you in my thoughts and prayers Vanessa. Hugs Gena

Thanks everyone for your replies. I realized I misspelled "adrenergic" in my topic title. OOPS! Katherine, thanks for the explanation. I think I have read a similar article before, but I'd forgotten about it. Thanks for posting the differences. I used to love scary movies, but not any more. What's weird is that when I'm in a really good POTS phase I can tolerate so many things that would normally provoke an adrenaline reaction for me when I'm in a bad phase. Does anyone get a lot of nightmares that come in phases and then suddenly go away? I'm in a phase now where I have a few nightmares every night and I wake up with my heart racing. I can tell my brain chemicals/neurotransmitters seem really out of balance right now because I'm having crazy mood swings. I can go from this to this to this in a matter of 15 minutes. The mood swings happen primarily at night. This happened last year when I first got POTS and then eventually I improved and the nightmares/mood swings went away. The nightmares usually happen if I've fallen asleep on my side and not often when I'm on my back. Thanks for all the feedback so far. Gena

I've been reading a lot of the NET posts and about excess norepeniphrine...I've had my catecholamine levels tested, I think twice, and each time they come out normal...however I have symptoms that I think are similar to hyperadrengic form of POTS? I am easily startled by loud noises, I can't walk into a doctor's office without my heart racing, I am prone to adrenaline surges and nightmares at night, I can't watch a scary movie or any movie with loud noises and a lot of flashing lights. I was totally fine in all of these situations prior to POTS onset a year and a half ago. Are these symtpoms typical of the good old regular form of POTS or are they along the lines of the hyperadrengic form? I'm so confused!! Thanks Gena

Bamagirl, Have you had your thyroid tested recently, as tachy all day could be an indicator that your thyroid is out of whack. It could just be a POTS thing too though. Is this a new symptom for you..to be tachy all day? Gena

My BP is low at night too. And tilting upward a bit really helps me for the most part. I've now started elevating my legs a little too and that seems to help as well. If I lie flat on my back I often get a lot of bradycardia and weird rhythms.

I often get bad headaches from low BP. Most of the time it feels like my head is constricting or imploding inward. I think it might be due to the over compensatory action by constricting blood vessels in the head that Finette posted. At least that is what it feels like to me. It's certainly not from hypertension for me. EVen after a spell of tachy while lying down, my bp might get up to 120/80 at the highest, but it's mostly just way too low all of the time. I know the headaches can be so painful though and interfere with daily activities. I can't think straight when I get them, partially I think due to low cerebral oxygen flow and mostly due to the intense pain. Gena

Actually yes, these are the same chia seeds that you can grow chia pets with! You can eat the sprouts too...although the seeds have the best nutrition. I'm ordering some online this week (the seeds, not the chia pets ). I'll let you know how I do with them. Gena

I have been trying to find a way to get extra fiber in my diet, since I have to avoid wheat and gluten products. I miss the benefit of the fiber in the grains. So I tried flax seeds for the extra fiber and omega oils, but found out I'm allergic to this seed. Anyway, I've been reading a lot about chia seeds (also an excellent source of fiber and omega 3s, b vitamins and calcium). In my research I kept coming across the fact that chia seeds absorb 7-10 times their weight in water and help with the body's ability to stay hydrated and maintain proper electrolyte balance. Thought everyone might be interested in reading this article. This is just one of many articles I found (I am not promoting this particualr site at all) http://www.integratedhealth.com/hpdspec/chia.html Would be interested in hearing from anyone who has tried chia seeds. Gena