green

Betty Crocker makes a gluten-free (GF) brownie mix and a GF cake mix. The brownie mix is delicious. Corn tortillas can be often used in lieu of bread. The only decent GF bread I've ever found comes from a dedicated bakery in the St. Louis area. The pre-packaged store bought stuff is really terrible.

Recent research suggests that healthy normal adults can improve their performance at a variety of different tasks by training intensively on programs tailored to target specific cognitive functions. For example, the tendency to conflate similar memories is inversely related to a person's capacity for interference resolution. Interference resolution fails when new information interferes with old information (e.g. a friend gives you a new cell number and you can no longer remember the old one.), and when old information interferes with new information (e.g. you keep taking the same route to work you've taken for a year even though yesterday you heard that the bridge is out). Research shows that college students trained at a task that requires intereference resolution will improve in performance on a variety of other tasks that involve interference resolution. Other research suggests that training on certain kinds of very demanding memory tasks improves problem-solving skills. But, POTS patients are not normal healthy adults and the results are mixed for cognitive rehabilitation in neurological disorders. For example, Huntington's patients and vascular dementia patients are not responsive to rehabilitation, while individuals with traumatic brain injury and schizophrenia are. There are certain neurobiological requirements for rehabilitation, and one of them seems to be adequate cerebral blood flow. Using the brain causes more blood to flow to the parts of the brain that are used, which causes the neurons there to grow thereby strengthening whichever cognitive function they subserve. But, the cognitive dysfunction in POTS is caused by some kind of vascular dysfunction - the brain isn't able to increase blood flow in response to a challenge. I started doing cognitive rehabilitation last year. I followed the protocol from a study that I read about in which intensive training improved problem-solving skills. When I was finished nothing seemed improved and I was somewhat frustrated. I also bought a program from Posit Science that trains your auditory memory and cognition, but didn't see much benefit. Here is a website that may interest you: www.cognitivefun.com I still play these games sometimes. I do it more for fun than anything else. The most interesting games are in the "experimental section" there is a 3-D matching game where you travel through a tunnel which trains working memory (again, this is the kind of training that is supposed to improve problem solving skills)

Hello, My doctor wants me to have a nerve conductance velocity test because after he diagnosed me with POTS he asked if I ever have any tingling or numbness in my arms or fingers. I have, so I said yes. Thus, the test was recommended. Well now, I have been reading a little bit about nerve damage, and I get the impression that the symptoms of neuropathy are fixed - the nerve is damanged 24/7, so the tingling or loss of sensation never goes away. I, on the other hand, have only had transitory tingling and numbness. This makes me think that the doctor maybe should have asked some more questions before he ordered the test. Furthermore, I have read that neuropathy can be specific to autonomic nerves. Someone can have autonomic neuropathy without motor neuropathy. So I wonder, does an NCV test check the different kinds of nerves? One last thing, the doctor is a six hour drive from where I live, he knows that it costs me about 2 days to visit him, but wouldn't give me a prescription and send me to a local hospital (which is what we did for the MRI). Does anyone think this is strange? The only reason it wouldn't seem strange to me is if the NCV tests are easily botched, and the doctor places his trust in the competency of his staff. Not a question but a remark expressing frustration: This diagnostic process is really difficult. And I am making it more difficult - by not asking more questions of my doctors. But I am fighting brain fog all the time - during a visit there are so many things I want to say, ask, but I forget, or even when I don't forget I run out of mental energy trying to follow the doctor's answer and respond to it. Then later, I can never get ahold of the doctor to ask follow-up questions. Sometimes I talk to them through their nurses, and have to fight through my deep-seated reluctance to discuss my health with a stranger. I resent myself for being unable to push through these things, but I can't get over it. I wish I had someone who I could "program" with my world-view, (that the only way to resolve this thing is to find the underlying cause) and then bring with me to doctor's appointments. I would love to talk to someone about whether my conception of how to approach the disease is prohibitively costly, or otherwise infeasible, but I can't manage to do it myself.

I keep hearing that fibromyalgia, CFS and POTS are related. Apparently, POTS is a label for someone who has the symptoms of autonomic dysfunction. CFS and fibromyalgia are labels for people who experience a constellation (I am not clear whether CFS and fibromyalgia refer to different syndromes) of symptoms including, but also going beyond autonomic dysfunction. The problem is that all of these conditions are just labels for symptoms. Until we know what causes the conditions, it's impossible to predict whether information salient to one condition can be applied to the others. Take the research suggesting that the virus XMRV (sp?) may cause CFS. I have POTS but not CFS, and I got excited when I heard about this new research, thinking "oh gee, maybe that's my problem too! Viruses are eating up my CNS, all I need is a good anti-viral" But then I realized that CFS symptoms such as tender lymph nodes, and chronic pain are suggestive of chronic infection, but POTS symptoms are not. CFS patients may have autonomic dysfunction due to chronic inflammation, and the chronic inflammation may be a very justifiable immune response to ongoing assault by a pathogen. I, on the other hand, may have autonomic dysfunction due to chronic inflammation, but chronic inflammation due to a hypervigilant immune system that can't discriminate between the flu virus and my hypothalamus. So, while the CFS patient can look forward to getting better on anti-virals, I cannot. Of course this is all just speculation and the reverse could be true as well. My point is that what ultimately matters is the chain of causality - how far back do the causes for any two conditions overlap? I really hope, and halfway expect, that some of you out there who have a POTS diagnosis, will be getting better someday in the not-too-distant future thanks to an anti-viral drug. I don't expect to be one of those people though.

I just started amantadine last week. The pharmacy printed the wrong dosing instructions and I ODed by an order of magnitude (I took 1 gram instead of 100 mg). I survived (although, I've read that 1 gram of amantadine can be a lethal dose). However, I was having heart palpitations the first few days I was on it. They would start in the middle of the night and keep me awake until dawn. So I started taking magnesium sulfate before bed. That was all I needed to stop the palpitations, and last night I didn't have any at all despite not taking any MgSu. If it gives you palpitations, ask your doctor about mangesium sulfate.

I heard that stronger calves helped pump blood up, but have never heard anything about quads. This intrigues me because my POTS symptoms developed in high school when I was running cross-country in the fall and track in the spring. Symptoms would persist during the off-seasons. However, when I went to college in California I started a regime of recumbent bike riding - I would push the resistance up as high as I could take it, and really grunt and strain for 30 minutes to an hour. That was the only exercise I did and my freshman year in college I had the best GPA, and felt the best that I ever have. I felt so good that I joined the college cross-country team, and then my symptoms got worse again. I hate the thought of giving up cardio, because the only times I ever feel like myself are in the 1-2 hour grace periods between finishing an intense run and the post-exercise crash. However, I think I'm seeing a pattern here. Between my own history, and others' comments about cardio and high HR. I am going to commit to a month of no weight-lifting and no running. Just high resistance stationary biking.

I found a publication abstract that says there is no scientific basis for HPU: "In recent years, patients in the Netherlands confront their doctors with the diagnosis 'haemopyrollactamuria' (HPU), based on the presence of the haemopyrrollactam complex in their urine. The diagnosis is made by a commercial laboratory in the Netherlands (www.keac.nl). We have not been able to find peer-reviewed scientific literature on this metabolic disease. The haemopyrrollactam complex represents the so-called mauve spot, which was the subject of much controversy in schizophrenia research in the previous century. Reviewing all of the available data, we feel that HPU should be classified as a pseudo-disease." Hemopyrrollactamuria (HPU); from spots to pseudo-disease I am not familiar with the "Nederlands tijdschrift voor geneeskunde" journal and how well respected it is (I bet an easy way to check exists on pubmed.... like a cross-reference index that tells you how often the journal is cited by articles in other journals, if anyone knows how to do that, please let me know).

>When I was first diagnosed with POTs (my current complications ruin it!) I was given an exercise program designed off of my >some of my test results. >The goal was concentrated on keeping my heart rate within the range they gave (which was purposefully quite low) and >keeping it steady. The cardio included a 5-8 minute warmup, then 10-15-20 mins (depending on how far in the program I >was) of exercise, then a cool down of another 5-8 minutes. It really was to keep me from overdoing it. Light. The focus was >strengthening the legs, exercise consistently, and not overdo it. Reef Diver, What was the rationale for keeping your HR low and steady? Did you doctor say intense exercise could make POTS worse in the long run or hinder recovery?

>Id be interested if someone tried it - its relatively expensive although you can get one yourself by eating undercooked pork for a >few weeks no doubt... LOL. Autoimmune Therapies mentions tapeworm in the FAQ on their website. They claim that tapeworms are a hazar to the health of thr host (among other things, apparently, they can rob you of 30 % of your calories). Hookworms and whipworms, on the other hand, are generally well-tolerated.

Helminthic therapy is treatment for autoimmune syndromes; MS, allergies, asthma, crohn's disease, etc. It is still somewhat experimental, but it has a good track record so far. The treatment itself is radical-sounding - infestation with parasitic worms. The theory behind it is that our immune systems evolved to accomodate pereptual co-occupation by a foreign organism. Without that organism, the immune system is more likely to go haywire and attack itself. It seems like a logical corollary of the "hygeine hypothesis" of asthma - which says that Westerners get more asthma than third-worlders because our immune systems arn't preoccupied fighting off the germs and viruses found in nature. If the theory is right, then it could be useful for someone whose dysautonomia is autoimmune in origin. The downsides are that it is repulsive to even contemplate for many people (does not bother me), expensive (only provider I have found charges 3,000 $), and requires reinfection every 2 years, the upside is that you can't get a patent on hookworm and whipworm, so the treatment doesn't need FDA approval and you could get it right now if you wanted it. There is an article about it here http://themoderatevoice.com/46921/hookworm...lergies-asthma/ Also, the wikipedia article is good.

Has anyone compared energy drinks to coffee? I respond better to sugar-free energy drinks than coffee. I was not initially inclined to think that the extra ingredients in energy drinks (the herbs and B-vitamins) played a role in my greater tolerance of them, but after experimentation I think that the taurine may suppress caffeine related palpitations. I plan to test this by combining a taurine supplement with coffee. A big downside to caffeine (for me) is the diuretic effect. I have heard that there is a chemical similar to caffeine, called paraxanathine which is less of a diuretic. Wish I could get paraxanathine in a drink.

I lost 20 pounds (170 - 150) when I went on a vegetarian, gluten-free, dairy-free, but unrestricted calorie diet.

Flop, The milkshake part is interesting to me - since my symptoms are exacerbated by eating carbohydrates, I actually considered ingesting carbs just prior to my first test, but decided against it. Do you know why they had you drink a shake? Was it laced with a drug? I figure that Dr.s would use a test to help them decide what to do next... but my test was already negative. That's the problem - I don't feel like a 2nd test is justified unless it's substantially more sensitive than the first. I've kept track of my BP and HR myself - even during the worst symptoms they never appear out of the ordinary. I feel much worse after a hard run then I did on the tilt table and yet my stats stay in the normal range. I feel like these doctors are just machines - they execute the same algorythym for every patient no matter what. This guy I saw was listed on the dinet website with a positive review, and, he didn't even listen to all my symptoms - he cut me off after I mentioned dizzyness and a previous diagnosis of OI and ordered his tests. And it's not like I'm anti-tests! I definitely want to know why I don't feel good. I believe that if I can pin down what's wrong, I'll be more likely to get the right treatment down the line - even if I have something that can't be treated effectively right now - I want to have a proper dx, so that when a treatment for whatever-it-is finally emerges, I will be able to get my hands on it. -Green

Hello All, I am scheduled for a 2nd Tilt table test, and I am unsure whether to go through with it. I would like to know if anyone has any thoughts on the utility of a repeat test. A few months ago, I decided to see a neurologist who specializes in autonomic dysfunction (I found him on the dinet website) He asked me about my first Ttt - which was a negative (no symptoms, no abnormal change in BP or HR) and scheduled another one, at his clinic. I feel like a 2nd Ttt is a waste of money. While his clinic uses the same protocol used by Boston Medical Hospital (according to the technician this involves starting the test out with some deep breathing and the valsalva manuver), and my previous Ttt did not use this protocol, I have no information to suggest that this protocol significantly increases the sensitivity of the Ttt. Furthermore, I'm not totally sure what good a positive Ttt would do me. Will a positive vs. a negative test mean a difference course of treatment, or a different round of follow-up tests? I am beginning to find this situation very frustrating. I feel like none of these tests are *hitting* anything, so they're not revealing any new information about my problem. Has anyone else considered turning down a 2nd Ttt, or had a 2nd Ttt, and either learned something new or come to regret their decision?

Haha. Thanks for forewarning me. Taking a bottle to the bathroom at work probably would feel awkward. I take it that the 24-hour urine analysis is a popular test for doctors to order. Have you ever had one done through a commercial lab company like Labcorp or Quest? My doctor told me that the urinary preservatives are important, but only used by "high quality labs." I asked him how to tell whether a lab was "high quality" and he told me to go to a University hospital lab. So that's what I plan to do right now - although they're closed for the holiday, and I wish I could get this over with. BTW, what is this test for besides pheochromocytoma?

That's great news for me. I thought I'd have to take off a day of work to sit in a lab and pee! Thanks!

Hello, My doctor ordered a "24 hour urine analysis" for me including vannillyimandelic acid, metanephrine, dopamine, 5-hydroxy indole acetic acid, Epinephrine, Norepinephrine and "a seperate 24 hour urine for sodium." The labs are closed today for the 4th of July weekend - but I am trying to figure out when to have this test done. Do you have to spend 24 hours in the lab? Thanks, Green

I have also experienced this phenomena and attribute it to the way that being sick changes my behavior - I rest more, worry less, and eat less. Resting more means I have more energy when I do need to move. Worrying less means I don't get nervous. Eating less means I don't have postprandial hypotension. But there could be more to it. For example, I think fevers raise the body's blood sugar levels.

Male. Height: 6'2 Weight: 165 currently. In the past year it has ranged from 155 - 175.

Amino Acids! I know a thing or two about amino acids. L-tyrosine - I have had some success with it helping me focus. It is a precursor to norepinephrine and the small number of clinical studies that have been done on it suggest it helps the body cope with stressors (sleep deprivation and cold). I found that taking 1 - 2 grams a day in divided doses helped my focus. The effect is subtle - I never felt different in any way, but I consistently noticed a slight increase in focus. Puritan's Pride sells L-tyrosine for cheap. I discontinued though because I didn't feel the benefits were worth it. L-Citrulline - I read that it could effect NO levels, so I've been taking 1 gram a day. Nothing much going on as far as I can tell. It may make me less dizzy, but I can't be sure. I am going to up my dose before I discontinue. L-glutamine - they put this in whey protein powder. I have had a lot of whey protein powders, and they don't do anything for me except help me gain weight. L-theanine - God puts this in green tea. At large doses (they sell a green tea gum to help with weight loss at Walgreens) it makes me calm and enhances my vision. However, I saw no consistent benefits to my cognition so I discontinued. Hope this helps.

This is great stuff everybody. I'll cross Ohio and Chicago off my list of possible places to move. Please let me know how things work out Cat Lady. Thank you to Melissa Reid for the detail about your QoL in Oakland. Thankful - I've heard that Portland gets a lot of rain. Rain/dampness seems to be a widespread symptom exacerbator for dysautonomics, it certainly bothers me. But it doesn't irritate you? Do you know much about what kind of dysautonomia you have? ramakentesh - I also felt great at a high altitude (I went to Keystone Colorado recently) I was able to ski hard-core all day, which is strange because I get weak legs from walking up the stairs here at sea level in Missouri. Strange eh?

Hello. I was wondering if anyone with a dysautonomia has recently moved to or from the Bay Area in California? If so, could you please share whether and how your symptoms have changed since the move? I am interested in how climate mediates dysautonomic symptoms. In my experience, sunny and cool weather is ideal. I think that this is because it is usually sunny when there is a high pressure air system overhead, and high air pressure is good for dysautonomia. I understand that California is sunny and dry, and the pacific ocean averages higher pressure in the winter than the inland United States. I wonder whether coastal california enjoys the best possible combination of sun, moderate temperature and high air pressure.

I often have terrible mood swings, especially during a crash. For example, sometimes I exercise too hard - I might run 30 minutes on a treadmill or do a full lower body workout on lifting machines. That's a setup for a crash. Immediately afterwards though, I'm feeling really good, so I might decide to go to the grocery store and pick up something I need to make dinner. So, while I'm walking the aisles my BP is falling, and I start to become indecisive 'do I really want eggs and mushrooms for dinner? Maybe I should buy some sausage....oh, and I need tuna fish while I'm here... no I guess I don't... well, I might as well...no I have a rule that I go straight home after exercising and I'm already breaking it... but I'm ALREADY here, so why don't I get the tuna?" I go back and forth between options, zig-zagging haphazardly around the store, sometimes turning around and heading in one direction, then turning around seconds later as I change my mind. Eventually I reach the checkout aisle, and (inevitably) there is a huge line. I stop and stand still and my heart rate slows. Suddenly, my legs start hurting, I feel weak, and I can't @(I@$( believe I'm stuck in this line. Within a few minutes I want to start screaming and kicking at the people in front of me because I feel so angry with them for being in line ahead of me. I tell myself that this is totally irrational to feel this way, and then I feel angry with myself for being so labile. One way or another, I'm irrationally angry at SOMEBODY. Then I go home feeling exhausted, but within minutes of sitting down I feel fine again. Is that anything like what your mood swings are like?

I believe that dysautonomias sometimes interact with narcolepsy. I have been diagnosed with narcolepsy by a polysomnography, which showed rapid onset REM during daytime napping. So, I'm pretty sure I "really" have narcolepsy and yet I rarely can take an afternoon nap and I have only experienced the involuntary loss of consciousness that characterizes narcolepsy once or twice in my life. I think this is because during the day my CNS is working extra-hard to keep my blood flowing and while this is exhausting in the long-run, in the short-run it keeps me awake. My brother has narcolepsy, but not a dysautonomia, and he falls asleep whenever and wherever the opportunity arises.

I don't understand this AT ALL! Why can't we just have Droxidopa shipped from Japan?