Gena

Julia, I would definitley check into the possibility of celiac with your doctor. You can at least rule it in or out with a simle blood test as long as you've been eating gluten in your diet regularly. They sometimes want to scope your small intestine to look for inflammation and do a biopsy as well if they suspect celiac. Are you deficient in any other vitamins like Bs or iron? Deficiencies in these are often associated with celiac or malabsorption as well. Wouldn't hurt to look into it more. I had numerous docs tell me I had IBS for months until I was finally dx'd with celiac. Good luck! Gena

The ups an downs are definitely frustrating. I've been doing well lately and climbing out of a very bad POTS hole that I was in for a few months. Tonight I wake up with heart racing and adrenaline surge from a nightmare. I start thinkging, oh great, am I sliding backwards again? And then I am like you, always searching for possible triggers. I wonder what was the trigger for the nightmare...I went to two movies in a row at the theater tonight, I ate some candy today and greasy popcorn, which I normally do not, was it the intense nature of one of the movies I saw? Or was it because I fell asleep on my side? (which often triggers a nightmare for me). My BP wasn't even very low, so I really don't know what caused this. I will sum things up by paraphrasing my cardiologist, Dr. Kusumoto at Mayo Clinic in Jax... He said POTS/dysautonomia is a general catch all term for what is probably at least 40 different genetic defects/conditions/diseases. "This is why one particular treatment does not work for all of us." he said. Which, is similar to the point Finrussak makes in her post. Personally, I think primary POTS is definitely somehow autoimmune related. I wonder what would happened if you moved out of your house into a different house but stayed in your same town, if your POTS would get better like it did when you went overseas? This may not be possible for you, but I'm just thinking out loud. On another note, the licorice helps correct adrenal insufficiency and the adrenal glands are so importatnt as they produce hormones that regulate how we deal with stress and affect how we retain fluid balance. So the licorice probably has something to do with your improvement in some areas. One day, I hope we find more clues as to discover the imbalances in our bodies and how to adjust them so that we can live life on even keel with out rocking up and down from good phases to bad phases. Glad to hear you're experiencing some time of relief though. Hang in there. (sorry for rambling! ) Gena

Sorry to hear you're in a dark place. Others had very good advice and tips to offer, so I don't know what else to add. I would definitely look at your diet and fluid intake to make absolutely sure you're doing everything you can outside of your meds that can help you. I also love to read inspiring or healing books when I'm really in a POTS hole. They seem to put things in perspective for me and give me hope. Also, have you checked with a cardiologist about your constant tachy? And with a neurologist about your blurring vision and migraines? Headaches/migraines can make everything seem unbearable because of the intense pain. I used to get (and sometimes still do) very bad headaches when my BP is low. I had them last for weeks at a time. When they finally subsided, I discovered I could actually take acccept, tolerate and manage my other symptoms much bettter b/c the pain had finally gone. I am sending out hugs to you and feel free to email anytime. I know you get adrenaline rushes too at night like I do. It does get better though. I've thought I was going to die so many times and I've wondered how I can live like this on a daily basis, but eventually my body somehow comes back to a state I can deal with and I have learned to appreciate the good days. May you find peace soon. Gena

I got into to Mayo Clinic in Jacksonville twice with only a 3 month wait as a new patient and only a 1 month wait for a return visit. My Primary doc's office just called up and made the appt. For the return visit, I made the appt. myself simply by calling the cardiologist's secretary. This Mayo clinic is not even in my insurance's network, but they still paid a majority of the costs and my Tri-care secondary insurance picked up the rest of the costs. I never quite understand when people on the board say they were denied access to one of the clinics. I've never had a single problem getting in. Maybe other clinics work differently though. Good luck! Gena

Hey Bama Girl, I just posted a question on this same topic not too long ago. I thought you might want to read it and see what other people experience. You are not alone! http://dinet.ipbhost.com/index.php?showtopic=3877 Gena

Stacey, So sorry you are dealing with a doctor you don't like and trying to deal with this new symptoms. When the tachy and dizziness get this bad many people on the board go to the hospital and get IV solution. The sinus infection could have really dehydrated your body. Perhaps the IV would bring you some relief? Also, have you had your thryroid checked? How's your blood pressure been when your heart is racing? My heart has been crazy the last few months too. A lot of arryhtmias, tachy and incredible chest pain. I think I"m slowly, but surely coming out of that phase though (knock on wood). It's very scary and uncomfortable. I can't recall what meds you are on, but could it be a new med or even an existing med that is causing the increase in symptoms? Just trying to think of anything that could be the culprit. I hope it's just a short-term POTSY thing that will go away quickly for you. In the mean time don't forget to do all of the non-pharmaceutical measures to help relieve your symptoms. Sometimes it's easy to forget a few of these things, and they can really make a difference. Keep us posted. P.S. I loved the bear you crocheted. I wish I were talented like that! He was really cute.

Roselover, So glad to hear you're hanging in there and that all is going well at Mayo so far. I truly hope they find some answers and that you find a treatment that will provide you relief and some quality of life back!! Keep us posted. Hugs, Gena

You have been through the ringer Lisa, and yet you continue to have a fighting spirit. Keep it up! I will pray that your insurance will cover that costly med so you can eat properly. My heart goes out to you and I hope that they will find the right treatments to help you recover quickly. Sounds like you have a great doc who is very understanding and I'm glad your co-workers and family are supportive too. Think positive, healthy thoughts. Think about your body being re-balanced and finding it's natural equilibrium again, where everything is working in harmony. I will keep you in my thoughts and prayers. Gena

Hi Mom4cem, I think we're in the same boat! I tried toprol xl last week and it made by BP too low, so this week I'm trying midodrine. I've been having episodes of the shakes too. MY HR can be in the 80s just lying down, which is high for me b/c my resting HR is usually in the 50s. I didn't take a shower until yesterday afternoon, because I knew my HR was too high in the morning. I know this is really uncomfortable for you and not to mention FRUSTRATING!!! Was there a reason you switched from atenelol to toprol? Your body may be trying to adjust to the new med and dosing. You may indeed have to try a higher dose of toprol or go back to atenelol if it worked for you. By the way, beta blockers normally give you dry mouth and make you feel thirsty, so that's probably why you're experiencing that symptom. Have you tried increasing fluids, salt or taking a magnesium citrate supplement? What about listening to a meditation CD and trying breathing exercises. Sometimes trying to breath and meditate can be very frustrating for me at first when my heart is pounding in my chest, but if I stick with it, I can eventually get it to calm down. I am sure you are trying to do everything you can to reduce your HR, but sometimes we forget to try some of the little things that can make a difference--even eating a bowl of high sodium broth/soup can help you retain fluids and increase your blood volume. Hang in there. I know this will pass. It seems like a lot of us are going through this bad phase right now. I'm send hugs and calming thoughts your way! Gena

Just curious if anyone has had Dr. Grubb explain these adrenaline episodes and why we shake/tremor afterwards? Gena

Here is my experience of Adrenaline Surges...would appreciate your experiences too: 1. My adrenaline surges only happen in the middle of the night or wee hours of the a.m. 2. I get very tachy and then I can feel the adrenaline surging through my body, my feet sweat profusely and then a few minutes later my body shakes all over and my teeth someitmes chatter, even though I'm not cold. 3. The length of time this lasts can very from 15 mins. to up to an hour. After the episode I often do get cold. 4. Sometimes I also experience nausea, bad chest pain and numbness in my left arm during the tachycardia (yes, all the signs of a heart attack!!) My question to those who also have adrenaline rushes... What are your symptoms and when do you have them? Can you identify what triggers these episodes? Have you ever had a doctor explain them to you? P.S. I think it was Persephone's post that said her doctor refers to these episodes as anoxic seizures. I've never heard of this but her doctor said the shaking /tremors were the body's way of getting blood to the brain. I am not sure if our adrenaline rushes are the same thing as these seizures. I don't feel like I'm having a true seizure when this happens. Thanks, Gena

Hi there. I posted recntly on another thread about getting tachy when sitting, but just to repeat, yes I get tach upon waking when I'm lying down, especially if it's in the middle of the night or wee hours of the a.m. It doesn't happen everyday, but lately it's been happenning more often. I also get the shakes/tremors in my whole body (not sure if it's the same as what you experience). I never knew what purpose these shaking episodes served and I've never heard of anoxic seizures. I think most of us call them adrenaline surges/rushes. I was just at Mayo seeing the cardio doc yesterday. I should have asked him about these. I think I will make a separate post about this question. Interesting to hear your doctor's view point about the shaking thing being a reaction to get the blood to the brain. I always thought it was the body's way of getting rid of the excess adrenaline that it released in the body. Hmmm, very interesting. Gena

You may want to consider getting a simple blood test for celiac first before you go gluten free. If you go gluten free for several weeks and then decide to have the test, it could come up as a false negative since you're body has not been exposed to gluten for a while. Your gliadin anitibodies may not be high enough to show up on the test unless you're eating gluten regularly. If you do decide to avoid gluten -- remember, that it's is found in SO many things, even items you wouldn't think of like soy sauce, artificial flavoring, malt, food starch, etc. Sometimes I just wind up calling the manufacturer of the product if I'm unsure if it's safe. The best way to go GF initially is to purchase only items that specifically say gluten free. Usually these can be found at a health food store, but here in the states, GF products are slowly making there way into mainstream grocery stores as well. Best of luck to you. YOu're symptoms sound so similar to mine right before I was dx'd with celiac. There are a lot of great books and online tips for avoiding gluten foods that may be helpful to you as well. Gena

I can get tachycardia lying down, sitting, standing and/or after I eat. I can go for months at a time though with very little symptoms and then I crash Usually when I'm feeling tachy my HR is in the 80-90s, which is high for me. If I'm having an adrenaline rush, then my HR has gotten as high as 140. When I'm in a bad POTs hole, sometimes I can just roll from my side on to my back and it sends my heart racing. I woke up at 5:30 am today and simply rolled over on my back and that triggered tachycardia and then an adrenaline rush and tremors for the next half hour. When I take my BP it's okay, but by that time my HR has gotten my BP to climb a little, so I am sure it was quite low before the tachy started. After the tachy goes away, my BP always seems to go very low again. I truly wish we could figure out what triggers these things. It drives me crazy!! Gena

I'm a little late chiming in here Stacey, but I'm glad that so many others were here to lift you up and offer their support. It's only been 1.5 years of POTS for me and I can tell you there have been many nights that I wonder "how I will be in 5 years from now?" or what will my condition will be like when I'm 60?...and worse yet, will I even make it to 60? Then I look inside my heart of hearts, and I know I will continue to face the challenges each day brings and enjoy the small triumphs and take pleasure in the "good" days. I have learned to make reasonable short-term goals, and also focus on "what can I do today." If I think about all of the what-if's it drives me crazy. I do believe though, their will be some great medical advancements that will help our condition. Ten years is a long time to live with this, but you are still living and you have a purpose here on earth. I'm sure that even though you are limited in what you can do, that you make a difference in many peoples lives - including the people here on this board. Hang in there girl. I hope it goes well with the new doctor. Hugs to you, Gena

Some people can't stomach the salt tablets. You may want to try just putting sea salt in your water or gatorade throughout the day. I use a brand from the health food store called Real Salt. It's loaded with trace minerals too, unlike table salt, which just depletes your body of minerals. Gena

"the soft tissue and such in my upper back.. and right shoulder.. there is often a great deal of pain.. asociated w/ this.. and of course the associated pain in the arms ribs and hands and what not...I also have gigantic knots all through out my collar bones-shoulders. shoulder blades, ribs and along the sides of my spine.. and up and under the back of my head..(the base of my skull.. where the head meets the neck)... My" pressure points" are all very painful most of the time.. " I have fibro too and what you mention above describes me to a tee! I can totally relate. I work at the computer most of the day at my job, so it really contributes to my pain. I find massage very helpful. Even though my trigger points are painful when they are rubbed, I've built up tolerance to it and actually feel much better after getting them worked on. Gena

Hi Jan, I think I may have mentioned this before, but there is an awesome, very inspiring book called Love, Medicine and Miracles: Lessons Learned about Self-Healing from a Surgeon's Experience with Exceptional Patients by Dr. Bernie Siegel. It may give you and your husband some hope to continue fighting this disease and some methods to help strengthen his body's immune system and cancer fighting abilities. It is about this doctor's transformation and how he helped many cancer patients accept their condition but also fight it. He has saved many lives. It's a book of hope and incredible insight into the mind/body connection. This book is great not only for cancer patients but for anyone facing a chronic illness as well. I can't recommend it highly enough. (My grandmother gave me this book and I often read it when I'm in a POTS hole) I am sending lots of cyber hugs to both of you. I pray that the next rounds of chemo are highly effective. It's important that his mind set be positive too and that he has faith in his physician. Best wishes, Gena

I've been having adrenaline rushes and the shakes too lately, but they happen to me when I'm under extreme stress and only at night. They arent' panic attacks, but my body just goes haywire and can't keep my bp, heart rate or adrenaline in balance. I do not like to take meds at all if I can help it, but I find that Klonopin helps get through these episodes and it seems to lessen the intensity of them. I've tried xanaxoccasionally too, and that helps from time to time, but I have to take baby doses so it doesn't lower my BP too much. Flavored Magnesium citrate powder mixed with warm water (like tea) also helps relax me. You are right the B vitamins are important especially under stress. I'm so sorry to hear you're going through this. I know you must really want to stay in school and get your degree so badly. I understand setbacks like these are so frustrating. Have you thought about getting a degree online so that you can take classes and turn in papers at your own pace? Just a thought! Hang in there Gena

I take 400-800 mg of magnesium every day to calm my muscles, nerves, anxiety and heart and also for bowel mobility ( I use citrate and oxide forms). B-12 is good for energy if you have fatigue and it's also good if you're experiencing stress. Stress and alchohol among other factors can rob your body of b-vitamins which we need for many things such as proper nerve function and energy. If you have celiac or gluten intolerance like many of us do here, then b-12 deficiency can be a common problem especially if you don't follow a strict gluten free diet. Good luck and I hope they make you feel better. Gena

I used to feel the same way when I was first dx'd. I had major anxiety and still get it back when I'm in a POTS hole. When I first had symptoms I was afraid to walk down the street in my neighborhood as I usually did after dinner b/c I thought I would get too far a away from home and something terrible would happen (pass out, heart attack, etc). I was the same way about going to the grocery store or driving any distance what so ever. But gradually I learned to get used to these crazy symtpoms (although they can still be scary from time to time) and eventually my symptoms improved. I don't mind traveling by car for any distance now and I've gone on vacation a few times. It just takes extra planning and preparing. I haven't tried traveling by plane yet, that's my next hurdle! Just be gentle with yourself and take baby steps. If you travel to your mom's house, you'll have the comfort of knowing that mom will certainly take care of you while you're there. It does get better, I promise! Hugs, gena

Ben, This is great info about the chiropractor. I used to go to one in Charlotte, NC that practiced a similar theory and gentle manipulation. He never cracked my neck. I got big results within 6 weeks and felt great -- best chiro I ever had. I moved to Florida several years ago and my neck and pelvic area have really gone down hill in the last year. I really need some therapy. Thanks for posting this link! Gena

Thanks for your replies. Always good to know I'm not alone. I know I'll get out of this phase soon, but it might take me while. All I want is a good night's sleep! Lauren - I prop up my head and my feet and it does seem to help. If I didn't do that I'd be in a heap of trouble! My problem is I often turn over to my left side while I'm sleeping and my heart can't function well at all when I do that. Katie - I try to drink plent of fluids and salt too, and like you said it's a catch 22 b/c trying to go to the bathroom at night sets off our symptoms so badly. Last year I got a wheel chair which I keep by my bedside. I just skootch into it and keep my legs crossed in the chair and roll myself to the bathroom. I got tired of waking my husband up all the time to help me. It works pretty well. I get a little symptomatic still somtimes, but it's been a huge help. I don't need the wheel chair at all during the day, but it's a life saver at night and I don't have to ruin my hubby's sleep too. Hayley - My BP can get into the 70s/over 40s while I'm sleeping. When I'm in a good phase it stays 80s/50s while I'm sleeping and I seem to be able to cope with that, although it's still a little unpleasant. During the day my bp rarely reaches 100/65, it usually hovers around 90/60 until night time. Any other input is most appreciated! Gena

Jenn, What is a hepp line? And does it stay in permanently? Where is it located...on your arm? I am not familiar with these things, so please enlighten me. Thanks! Gena

Hi all, I have fallen in a POTS hole due to relentless stress at work these last few months (the workload finally subsided, but my body is still reeling from the aftermath). My BP is low during the day, but I can function okay, even exercise. At night it drops even lower right before bed time....and then even lower while I sleep which makes it extremely difficult to get up and use the restroom at night without setting off a whole autonomic storm. Also, it feels like I'm passing out when I'm falling asleep or while I'm sleeping. Experiencing a lot of bradycardia while lying down and then tachy while sitting or standing. Anyone else have the most trouble at night, and what do you do? It gets to the point where I develop anxiety about going to bed at night, b/c I know it's not going to be an unpleasant experience! I'm doing everything I can think of, except I haven't tried compression hose yet. I am going to order them this week. However, I really need to wear them most at night when I'm more symptomatic, but previous threads on the board all have said that doctors tell you not to wear the hose while you sleep. Does anyone here sleep with there hose on? Thanks for listening! Gena