firewatcher

I'll get fullness in my ears too, often if I bend forward at the waist or squat. I also get tinnitis and that "flapping" in my left ear. I figure it is some sort of spasm, like an eyelid twitch but faster.

I prepare the non-cooking parts while sitting at the kitchen table and then cook them quickly while sitting on a stool. Oven-baked items are great too (like roasted veggies or all-in-one dishes.) I have been cooking large quantities of salted rice on the weekends and then keep it in the fridge to "nuke" as needed. We eat a LOT of rice, and fortunately you CAN eat a lot of rice for very few calories. You can dress it up with raisins and cinnamon for breakfast or Italian salad dressing and veggies for dinner. We tend to eat the "fast cook" pastas like angel-hair instead of the 15-18 minute penne. Sauces can be made in large batches and frozen in smaller meal-size containers. Once my system "cleaned out," I rarely crave sweets like I did; but if I do, I go for real sugar, fruit or honey; I've never been able to tolerate artificial sweeteners in anything...they bring on migraines. I'll get a couple thick slices of ham or turkey from the really good section of the store deli (Boars's Head) and just reheat that for the meat portion of our main meal. We use a lot of frozen veggies too (no sauce.) I have to limit my meat intake due to unknown kidney issues (possible renal insufficiency/ CKD) so I eat mostly grains (oats, corn and rice,) fruits and vegetables. I'll make cookies for the boys, but once I've had one, I just don't want more. My gallbladder never functioned like it was supposed to, so I learned to curb the fattening foods from an early age...they just weren't worth the pain! My Oriental Medicine doc told me that I was to eliminate all sweet, cold and raw (except fruit)foods and drinks, and that has made a huge difference in my bowels. I was always one for salads, but I'll forgo them for the blessing of regularity. Drinking hot or room temperature liquids has also made a big difference in "transit time," cold liquids just get stuck in my throat and then I'm cold for hours! Snacks are usually salted nuts or fruit, olives work well--they are very filling.

The hard part is not allowing the "bad stuff" into your house. Once you clean out your kitchen, just don't buy it. It is hard and it is not really a diet, but a lifestyle and you have to stick with it! Get your kids (if you have them) involved in cooking too, it is a necessary life skill anyway and will take some of the burden off you!

Hope this helps!

Jeannika~ i just looked up the neurofeedback..... im very curious (as, im in the same boat as Chaos.... ive tried meditation, positive thinking meditation, deep breathing... yet nothing works for me).... Can you briefly explain what one of these sessions is like? Do they require any part of the head to be shaved? (cuz i saw pics of the wires attached to a guy's shaved head on widipedia... lol) I seem to only respond well to klonopin and nothing else. Stress is a killer for me.... 2 years of intense, constant, severe stress in every single area of life, school, work, family, hubby, kids and their school problems, plus health.... put me in a downward spiral for about a year and half now. I am tough and strong willed, but apparently my body isn't... ugh.

But im very interested as to what a session is like.....

much thanks

hilbiligrl

My son is going through neurofeedback sessions for ADD right now. The first session was "brain mapping" where they put a tight cap with electrodes on your head, squirt goo and put electrodes in a bunch of holes and have you sit with eyes shut and open and measure all kinds of brain waves. Each session, my son has 6-8 electrodes "gelled" to his scalp (they pull back the hair to get to the skin--short hair helps, but you don't need to cut yours to do these.) Each session lasts about 45 minutes and the tech has him concentrate on either lowering certain brain waves through relaxation and breathing or raise others with concentration and games. It is really guided self-awareness training. He's had 12 sessions so far and I can see very small improvements in his impulsive behavior, but nothing huge.

One thing that has me a little worried is that his "brain map" shows typical Generalized Anxiety Disorder patterns, but he does not have GAD or its symptoms. His doctor says this could be a sign of increased sympathetic nervous system activity, possibly a neural predisposition for POTS---so we are watching for ANY symptoms...puberty is coming up fast!

Hi Dani,

I did allergy shots for most of last year, and they had me stop the BB only on the shot day. I only take mine once a day, so I did not need to taper. Granted, that day was rough, but I did get the shots. Is that something that you could do?

You tube link to personal transport device

I hope this link works, this thing is TOO Cool!

My son has a severe allergy to milk and all its forms, so we have been "eating clean" for the past 8 years. It is difficult, everything is from scratch, and all meals are home-cooked. We just don't have "eat-out" options, so we don't. Very little of our food comes in a box, and you'll find that you just skip the entire center of most grocery stores. It can be done and once done, you will not crave or even want to be around most other "foods." Get a few good cookbooks or go online and get started, one dish at a time. I am currently making my son a cookbook of all the meals I make, so that he will have it later; it includes all the substitutions that are necessary to make dairy-free cooking work.

This year, I am also going to try to have a small garden. That really cuts down on the food expenses.

Having just come in from my Pilates session today on the reformer, I'll add my two cents. I can do more while supine, but certain exercises (like the supine walking or jumping) will spike my HR into the 140+ bpm range. To keep my HR below 110, I'd have to lay there and just wiggle my toes, even on a BB. For me, the post exercise pain is just as bad. HOWEVER, after two years of this, my core and legs are stronger and I do not need to wear compression daily. My muscles are now doing most of what the compression was doing. I do have protracted recovery and will often have a two day crash where I am very shaky and tachy post exercise with adrenaline surges. My physical therapist says that my anaerobic threshold is just too low. We both would have thought that two, dedicated years would have made it better, but it hasn't...yet. It isn't easy and I highly recommend personal sessions with a licensed instructor on the equipment before you put any money towards a reformer or other equipment. It helps to have someone spot you and tell you when to back off so that you don't hurt yourself. I'm still at it and have no intention of quitting, I would have loved doing all this if I were healthier. Pilates creates a beautiful body.

just found this from MECFS.org site:

Traditional measures of diastolic dysfunction are unreliable?

A key process in mapping out the cause of any disease is correlating symptom exacerbation with measures of dysfunction. If lactic acid buildup, for instance, contributes to muscle fatigue then as the muscles get more and more fatigued lactic acid levels should rise. Since exercise intolerance is one of the cardinal symptoms of heart failure one study examined indices of diastolic dysfunction to determine if they were correlated with measures of exercise intolerance (Skaluba and Litwin 2004)

The authors noted how inconsistently measures of mitral valve flow (E/A) or pulmonary vein flow (atrial flow reversal) have correlated in past studies with left ventricular filling pressure - the gold standard for diastolic dysfunction. Remember that diastolic dysfunction is synonymous with stiffness of the left ventricle. If it is unable to relax enough to allow filling the heart will use enormous pressure to fill it up - thus left ventricular filling pressure is indicative of diastolic dysfunction. The results are even poorer when individuals with intact systolic functioning (i.e. those with putative diastolic dysfunction such as CFS patients) are included. This suggests that E/A and atrial flow reversal tests are relatively poor indicators of diastolic function.

The problem with the E measure is its sensitivity to both changes in preload and afterload means it may reflect changes in those conditions rather than in reduced left ventricular relaxation or increased stiffness. Preload is the amount of tension in the ventricular wall just prior to when it contracts and propels blood into the aorta. Simply put it is a function of anything (blood volume, pressure) that effects filling (high BV, BP = high preload, . Afterload is the force in the arteries the heart must push against in order to expel its blood. Afterload is effected by peripheral arterial resistance, (high vasoconstriction = high afterload), viscosity of the blood (high viscosity=high afterload), etc. Thus conditions which cause increased preload, such as high blood pressure or reduced preload such as low blood volume (which many CFS patients have) may skew the results of these tests.

This study found that traditional indices of mitral valve inflows such as the E/A ratio, E-deceleration time and isovolumetric relaxation time were not significantly correlated with exercise capacity (Skaluba and Litwin 2004). (Isovolumetric relaxation time was almost (p<.069) significantly correlated with exercise capacity). That left ventricular mass correlated well with exercise capacity suggested left ventricular hypertrophy is a good indicator of serious diastolic dysfunction.

The measure which was best correlated with exercise capacity, however, was called E/Ea. E/Ea is the velocity of blood flows past the mitral valve divided by the early diastolic velocity of the mitral valve annulus. As Ea is less affected by preload than E/A it appears to be a more effective measure of left ventricular relaxation rates. E/Ea has been shown to be well correlated with both left ventricular diastolic pressure and with pulmonary capillary wedge pressure (PCWP). PCWP is the pressure found in the pulmonary arteries during diastole. As pressure builds up in the left ventricule it begins to cut off the circulation to the lungs, causing difficulty in breathing. It is increased LVEDP not reduced diastolic relaxation which produces the symptoms of heart failure.

FULL TEXT OF CITED ARTICLE

Easy Julie,

Just breathe! You KNOW how wonky we are when it comes to test results! How many things have you already been MIS-diagnosed as having? Do not freak out, yet. Follow up with your doc. Diastolic dysfunction is not a simple diagnosis. If you are concerned, go back to the doc who reported it with a long list of questions. Try to relax, you are taking fantastic care of yourself and you know it!

With peaceful thoughts and prayers!

Jennifer

Minerva Pediatr. 2010 Aug;62(4):333-8.

Autonomic imbalance in celiac children.

Barbato M, Curione M, Amato S, Carbone J, Briani C, Pannone V, Maiella G, Di Camillo C, Panetti D, Cucchiara S.

Department of Pediatrics, La Sapienza University, Rome, Italy - mario.curione@uniroma1.it.

Abstract

AIM: Involvement of many organs and apparatus such as heart, central and peripheral nervous systems have been reported in celiac disease. Autonomic neuropathy has frequently been reported both in untreated and in gluten free diet (GFD) adult patients and, to our knowledge, has never been investigated in celiac children. The aim of the study was to evaluate autonomic function in children with celiac disease.

METHODS: Fifteen children with untreated celiac disease were enrolled. Fifteen healthy children served as controls. None of the patients was diabetic. Central or peripheral neurological diseases, were absent. In all participants, at recruitment and after 24 months of GFD, serum anti-tTG and AEA levels, inflammatory markers, IgG, IgM and IgA anti-ganglioside antibodies, were performed. Heart rate variability indexes were employed to evaluate autonomic system balance.

RESULTS: Our results indicate that also children with celiac disease may exhibit an imbalance of the neurovegetative system with a prevailing sympathetic tone, persisting on a GFD. All presented symptoms such as abdominal pain, diarrhea or constipation, vomiting, meteorism, regurgitation in whom autonomic dysfunction could be involved, but these symptoms disappeared on gluten free diet. This tend to exclude the prevailing sympathetic tone as a main factor underlying symptoms of celiac disease.

CONCLUSION: Children affected by celiac disease exhibit an enhanced sympathetic tone, persisting after 24 months of GFD whereas gastrointestinal and systemic symptoms disappear. The pathogenesis of this phenomenon still remains unclear.

PMID: 20940666

I am guessing that this is simply another "cause" or "sub-type" for POTS. Apparently the ANS dysfunction continues, even on a gluten free diet, but like diabetes would, celiac or gluten sensitivity causes the same dysautonomias and control of the cause helps with the symptoms. Celiac would simply be the "cause" for your POTS, like MCAD, post-viral or any number of other conditions. It is great that it makes you feel better though, I hope you've found your cure!

My resting HR, now and before diagnosis, is anywhere between 45-65 bpm. Any change of position makes an almost instant spike in my HR. I am restricted to taking my BB only once I get out of bed, and never past noon because I have nocturnal bradycardia (low 40s.) No cardiologist has ever expressed concern or done any further investigation.

Cardiomyopathy from Mayo

Here is a link to Mayo Clinic on Cardiomyopathy. My Cardiologist calls this "End Organ Damage," from uncontrolled high BP or HR. I personally know one person who has this from POTS. Hers is after 25+ years of uncontrollable, incredibly high BP with orthostasis.

I don't think (and I'm not sure anyone knows for sure) that cardiomyopathy will effect most POTS patients, this is what happens with the extreme cases. I think that POTS combined with a family history or another disorder may make things more complicated. We all end up with wear and tear on our bodies from life itself and bad habits, so there is just no knowing that POTS, by itself, would cause this. I also don't think that enough time has passed, or research done to know what the ultimate prognosis is for POTS and its various subtypes.

I don't know if this helps, but try not to worry---it will only make things worse, both mentally and physically! Learn as much as you can without worry and have the knowledge to care for yourself and ask the right questions. Just be prepared for the probability that your doc won't have the answers.

Vasopressin, also known as ADH, is difficult to test for. I have had mine tested, several (5) times by reliable labs that know how to handle the specimens (Mayo and Vandy) and mine has always been undetectable even when severely dehydrated (serum Osmolality of 304). Copeptin is supposed to be a more reliable indicator, but the study that was to set the reference intervals has not yet reported its findings. I would not bother having it tested since collection and processing are so specific and there is such a huge rate of error.

As for your blood work over the years, you need to be aware of the current reference intervals to gauge what "normal" is. Until two years ago, my serum creatinine was considered "normal," when it was actually NOT. According to my labs and the current reference intervals, I've been at stage 3 Chronic Kidney Disease since 2006. A high BUN would indicated dehydration, but it could be other conditions as well. It really isn't as easy as "this test says this..." since many of the findings are dependent on the other levels of things (ie.-sodium and potassium regulate one another, if one is high, the other is usually low.)

It is easy enough to test ADH by giving you dDAVP and seeing what happens. If you retain fluids and your bloodwork comes into normal range, dehydration is probably the culprit.

Persephone,

It is probably a circadian rhythm thing. There is a natural lull in the body around that time, when the hormones and metabolic processes slow down, it could also be a blood sugar issue.

For those of you have confirmed hypovolemia, how do you know that you are staying "full?" Do you use weight? Use symptoms? Heart rate? I don't know that I am hypovolemic, but I have been told that I am, even though no testing was done. Honestly, I'm afraid that they are going to try to "bleed" me to lower my hematocrit, but if it is a volume issue, that would be a really bad idea.

Hopefully, her G.P. will be an understanding doc and do further testing. Don't let him/her tell you that you are overreacting! Don't back down and get another doctor if you have to do so. I wish I had known earlier than I did, many of my "life decisions" would have been different and I would not have spent years wondering "why can't I do this since everyone else can?" It could also save her from many years of misdiagnosis and possible mistreatment: I took steroids for years for asthma that I DID NOT have!

In the meantime, try the usual methods recommended for POTS patients (fluid and salt loading) and see if they help her. Good luck and keep us posted!

Answering your first question, my two sons (8 and 11) do not show signs of OI yet. I have done the home orthostatic testing on both and so far, so good. I suspect that my oldest may have some of my issues since he is prone to headaches and very "bendy," but only time will tell.

sj75,

Rest easy, it looks like you've got a good immunologist! This is from the Journal of Allergy and Clinical Immunology from 2004:

Abstract

Rationale

Allergy to chestnuts has been widely reported in the latex-fruit syndrome. However, few studies address actual allergy to chestnuts in patients reacting primarily to this food. We report a case series of chestnut-allergic patients to find out clinical and immunologic features.

Methods

Twenty-two consecutive subjects proven to be clinically reactive to chestnut by a positive DBPCFC result or a convincing history of anaphylaxis were included in the study. Patients underwent SPTs with chestnut, banana, avocado, kiwi, melon, peanut, walnut, hazelnut, latex and aeroallergens, as well as specific IgE determinations. Relevant allergy to the other foods was established by the DBPCFC method.

Results

The age of onset of reactions to chestnut ranged from 5 to 70 yr. (median=28 yr.), with 8/22 (36%) patients having experienced severe anaphylactic episodes. SPTs with chestnut were positive in 71% and specific IgE was detected in 54% of patients. Besides, 86% and 59% of patients had also positive responses to pollen and latex allergens, respectively. Eighteen patients had actual allergy to other foods; mainly banana, 45% of patients; avocado, 40%; and hazelnut, 32%. There was a significant association between sensitization to latex and clinical reactivity to avocado and/or kiwi (p<0.01); while reactivity to hazelnut was associated with allergy to peanut (p=0.003) and walnut (p<0.001).

Conclusion

One third of the chestnut-allergic patients experience severe anaphylactic episodes on ingestion. Chestnut reactivity is frequently associated to actual clinical allergy not only to fruits, but also to other tree nuts.

Please!, go get her some medical help. I was yelled at by countless PE teachers to get my "lazy bu++ around that track!" and never could! I've had POTS symptoms for as long as I can remember (I remember symptoms clearly from age 6.) They may not be able to help her symptoms much, but KNOWING what you can and can't do is incredibly freeing. I blamed myself for my lack of "fitness" for many years and ended up damaging joints and many ligaments by pushing myself too hard. I know now what happens when I am standing in the sun or running or anything stressful...there are reasons for what I feel and it is not "in my head." I'm sorry she has to deal with this, I'm sorry that you do too, but there is no reason for her to suffer abuse.

Thanks firewatcher, I think you have just answered more questions I've had for years as to why I have a problem with sunglasses.

If you find a really good technician at an eyeglasses store, they will tell you that some people are overly sensitive to the lenses, their brains just won't make the adjustment needed to tolerate the lenses. I can even tell if there is a flaw in the acrylic. Most people don't see anything, but I guess I'm special .

You know you have me thinking now because at times I think my sunglasses mess with me. I don't normally have too much visual disturbance but especially if I have smudges on my sunglasses I think they do especially when I'm moving in the car.

I have wondered if I would do better with a different pair of glasses and I know that sounds totally bizarre to blame it on the glasses.

Actually, the glasses may be to blame. I absolutely can NOT wear the high-impact, polycarbonate lenses. They distort my vision--big time!! I'll get nauseated just looking through them. Fish tanks cause the same thing. I'll get this strange, vertigo/sick feeling. Plain, old acrylic lenses are the only ones that I can wear. The UV film on my sunglasses sometimes makes me dizzy too, it causes this strange, aura-like effect depending on the lighting.

It is called a post-coital headache. It is in the same family as the post-exertional headache. My neurologist has recommended an extra dose of klonopin before intimacy. Not the best option, but is sure beats the pain.

I've come across studies from the US, Greece, Spain, Poland, Russia, China, Japan, Israel, India, Brazil and Australia. Not all countries will call this POTS, in Asia it is Orthostatic Dysregulation. I think that those diagnosed with POTS are primarily the US, UK and Australia, but if you search the term orthostatic it brings up many more hits from all over the globe. The one group that seems "immune" is anyone of purely African ethnicity and then there are studies of how strong their tolerance to orthostatic challenge actually is compared to everyone else. I think that the prevalence of European ancestry is simply a reflection of the participants of this forum.

Hi, I am half Caucasian (1/2 Scottish and 1/2 English) on my mother's side and half Chinese on my father's side.

I have tried to find out whether any of my Asian relatives have had anything like this and so far no one has.

I am positive this comes from my mother's side of the family as she also had some brief episodes of tachycardia in her 30s.

I would be interested in whether any other persons of Asian descent have this condition.

This is simply the latest article from an Asian source:

Am J Cardiol. 2010 Aug 1;106(3):378-82.

Flow-mediated vasodilation and endothelium function in children with postural orthostatic tachycardia syndrome.

Liao Y, Chen S, Liu X, Zhang Q, Ai Y, Wang Y, Jin H, Tang C, Du J.

Department of Pediatrics, Peking University First Hospital, Beijing, People's Republic of China.

Abstract

The study was designed to explore flow-mediated vasodilation (FMD) and endothelium function in children with postural orthostatic tachycardia syndrome (POTS). The patient group consisted of 46 children 12 +/- 3 years of age who were diagnosed with POTS from June 2008 to January 2009 by head-up test or head-up tilt test at Peking University First Hospital. Twenty healthy children 12 +/- 4 years of age were selected for the control group. Plasma concentrations of nitric oxide (NO) and activity of NO synthase (NOS) were determined in the patient and control groups. FMD of each participant's brachial artery was measured using color Doppler vascular ultrasound and a comparison of FMDs and plasma NO and NOS activities between the 2 groups was done using independent t test. No significant differences were found between the POTS and control groups in age, sex ratio, height, body weight, baseline blood pressure, heart rate, and baseline brachial artery diameter. Patients in the POTS group had larger FMD (10.8 +/- 4.4%) than children in the control group (5.7 +/- 2.2%), and this difference was significant (p <0.01). Plasma NO and NOS levels were significantly higher in the POTS group than in the control group (NO 74 +/- 19 micromol/L in POTS group vs 62 +/- 6 micromol/L in control group, p <0.01; NOS 21 +/- 3 U/mL in POTS group vs 15 +/- 1 U/mL in control group, p <0.01). In addition, there was a significant correlation between FMD and the NOS activity. In conclusion, augmented FMD and abnormal function of vascular endothelium may play an important role in POTS in children.

Copyright © 2010 Elsevier Inc. All rights reserved.

PMID: 20643249 [PubMed - indexed for MEDLINE]

and one from Japan:

Pediatr Int. 2009 Feb;51(1):169-79.

Japanese clinical guidelines for juvenile orthostatic dysregulation version 1.

Tanaka H, Fujita Y, Takenaka Y, Kajiwara S, Masutani S, Ishizaki Y, Matsushima R, Shiokawa H, Shiota M, Ishitani N, Kajiura M, Honda K; Task Force of Clinical Guidelines for Child Orthostatic Dysregulation, Japanese Society of Psychosomatic Pediatrics.

Department of Pediatrics, Osaka Medical College, Takatsuki, Osaka, Japan. hidetaka@poh.osaka-med.ac.jp

Abstract

This clinical practice guideline provides recommendations for the assessment, diagnosis and treatment of school-aged children and juveniles with orthostatic dysregulation (OD), usually named orthostatic intolerance in USA and Europe. This guideline is intended for use by primary care clinicians working in primary care settings. The guideline contains the following recommendations for diagnosis of OD: (i) initial evaluation composed of including and excluding criteria, the assessment of no evidence of other disease including cardiac disease and so on; (ii) a new orthostatic test to determine four different subsets: instantaneous orthostatic hypotension, postural tachycardia syndrome, neurally mediated syncope and delayed orthostatic hypotension; (iii) evaluation of severity; and (iv) judgment of psychosocial background with the use of rating scales. The guideline also contains the following recommendations for treatment of OD on the basis of the result of an orthostatic test in addition to psychosocial assessment: (i) guidance and education for parents and children; (ii) non-pharmacological treatments; (iii) contact with school personnel; (iv) use of adrenoceptor stimulants and other medications; (v) strategies of psychosocial intervention; and (vi) psychotherapy. This clinical practice guideline is not intended as a sole source of guidance in the evaluation of children with OD. Rather, it is designed to assist primary care clinicians by providing a framework for decision making of diagnosis and treatments.

PMID: 19371306

I currently have the Omron HEM 712c and after being at the hospital, Im not sure its reading accurately. It has been reading low but at the hospital it was high. Its super important that I have precise readings because Im changing medicine due to my recent flare up.

What type of monitor do you have? Which ones have ypu had trouble with?

I've got a ReliOn HEM-412CREL but sometimes it gets confused as well. Any of the automatic cuffs will sometimes get confused with our wonky readings. I test mine on my husband, using him as a control subject. The other thing to do is take the cuff to your closest doctor's office and have the nurse do a manual reading on you and check it against the cuff. My first cuff was an ancient thing and I got a new one when my old doctor told me that I couldn't possibly be having BP readings like what I was getting. I got a new cuff and it did the exact same thing! So the next time I was at the docs, the nurse took it and all the readings were accurate: old, new and manual cuffs. It really was 128/110 or 90/70! There are certain things that will cause inaccuracies every time though: incorrect arm position, incorrect cuff position and muscle tension.

German and Irish here too!

Just to spoil the fun though, I think that this is more a sampling of the forum. There are a few published studies from the Middle East, South America and Japan using those populations. One thing that is of note, like many other diseases/conditions, orthostatic intolerance is far more prevalent among whites and more specifically women. If you look into aero-space research you'll see that Blacks have incredibly high tolerance for orthostatic stress, so you would be unlikely to find many POTS patients from that ethnic group. There are simply some diseases that hit certain races or genders harder than others and ours is poor orthostatic tolerance.

Another thing to note is that it could simply be misdiagnosed or underdiagnosed in other populations. Goodness knows that it is hard enough for us to have gotten a proper diagnosis to begin with, and the US/Europe/Australia are supposed to have the best healthcare in the world.