diabeticgonewild

I have the same problem with upper arm BP monitors. I now use the CVS brand wrist BP monitor, which works fine. However, I put my wrist monitor across my heart when taking the BP reading. http://www.cvs.com/shop/product-detail/CVSpharmacy-Advanced-Wrist-Blood-Pressure-Monitor?skuId=800228 (The bad ratings mostly have to do with the specifications of the product described online, due to the inaccurate battery size) This wrist BP monitor has high ratings on amazon.com http://www.amazon.com/Omron-Series-Wrist-Pressure-Monitor/dp/B004D9P1A8/ref=sr_1_3?ie=UTF8&qid=1371330247&sr=8-3&keywords=bp+monitor Here is a BP log I made for people with dysautonomia: Excel Version: http://depositfiles.com/files/n6xah211s PDF Version: http://depositfiles.com/files/2qjup0mmz

Is there an alternative PE program that he can go through? I know in my state that there are plenty of kids who do alternative PE, who get credit outside of school district programs, who do not have disabilities. Where I live, a local rehabilitation hospital is holding a seminar on dysautonomia. They are recommending aquatics for rehabilitation, in the form of aquatic therapy. Is there any way he could do an alternative PE program, such as rehabilitation or aquatic therapy, under the supervision of a physical therapist? You could kill two birds with one stone. He could get reconditioning training and receive PE credit.

I am going to make a YouTube video on it, eventually. I don't think the process takes more than 15 minutes to make the packs. With chronic illness, we certainly do not have the energy to work on "projects".

I live in the south and I could not justify spending $220 for a phase change, Arctic Heat cooling vest, that was going to be worn during exercise. So, I am working on making my own phase change cooling vest. Phase change cooling packs are advantageous compared to traditional ice packs because the packs maintain their frozen state in higher temperatures, while traditional ice packs melt. Therefore, you stay cooler for longer periods of time. You can store the phase changing packs (or traditional ice packs) in a tactical armor plate carrier vest, which police use for protection. The vest can also be used as a heating vest, that is microwave-safe, except different chemicals are used for the phase change heat packs. You can also switch out phase change packs if the cooling effect runs out. I will be posting a more detailed tutorial later, for both DIY cooling and heating vests, but I hope this idea is inspiring enough for somebody to try it out. _________________________________________________________________________________________________ MATERIALS: * Lancer Tactical CA-302B Adjustable Tactical Carrier Airsoft Vest (Black) (http://www.amazon.com/gp/product/B00BJ6AXIS/ref=oh_details_o00_s00_i00?ie=UTF8&psc=1) * Sodium Polyacrylate (http://www.watersorb.com/prices.htm) * FoodSaver® Vacuum Sealer (http://www.amazon.com/FoodSaver-Advanced-Design-Vacuum-Sealer/dp/B0044XDA3S/ref=sr_1_1?s=kitchen&ie=UTF8&qid=1370980474&sr=1-1&keywords=food+saver) * FoodSaver® Bags (http://www.amazon.com/FoodSaver-FSFSBF0116-6-Inch---9-Inch-Pint/dp/B0000CFFSM/ref=sr_1_4?ie=UTF8&qid=1370980627&sr=8-4&keywords=food+saver+bags) or FoodSaver® Rolls (http://www.amazon.com/FoodSaver-FSFSBF0534-8-Inch-20-Feet-Rolls/dp/B001U0274Q/ref=sr_1_2?ie=UTF8&qid=1370980702&sr=8-2&keywords=food+saver+rolls) * Water * Food Coloring (if desired) __________________________________________________________________________________________________ GUIDE: 1. How to Make Homemade Phase Change Packs (http://www.thriftyfun.com/tf21099760.tip.html) Making homemade phase change cold packs should be relatively easy to implement as they are by definition not freezing cold but instead delivering a more constant and stable 60 degrees F. for a much lower period of time. The recipe calls for the use of something called Sodium polyacrylate it is the stuff that also happens to be in baby diapers. One can get Sodium polyacrylate from, http://www.watersorb.com/prices.htm The unique thing about Sodium polyacrylate is that it has the ability to absorb 30 gallons of water per pound of sodium polyacrylate granules. A little sodium polyacrylate medium sized granules goes a long way. One should only use 1 teaspoon of sodium polyacrylate granules per quart of water. So for example when using a gallon sized ziploc bag use no more than 4 teaspoons of the sodium polyacrylate granules with four quarts of water. By using the sodium polyacrylate granules when mixed in the proper recommended above ratio one can make a suitable homemade phase change pack that can by design parameters have a much higher and not freezing cold 32 degrees F but instead delivering a more constant and stable 60 degrees F. for a much lower period of time. This is the way to go as far as customizing ones own homemade phase change pack for different desired objective temperature points for different chilling objective applications. 2. How to Seal Phase Change Packs (Use a Vacuum Sealer) (other instruction for sealing phase change packs) 3. How to Put Phase Change Packs in to the Cooling Vest 4. Wear the Vest

That's true Chaos, but the only problem is that there have been imaging studies suggesting smaller, "grinch" hearts. In some ways, proving you work hard is the best way to stop this problem. Either through physical therapy or cardiovascular rehabilitation. Supervised and monitored exercise is key as you have to show up and put in the effort according to what professionals think is necessary. They record what you do, so outcome and efforts are measured by them. Therefore, you cannot be blamed.

I wouldn't worry about dementia too much. I heard from a doctor one time, "if you have dementia, you will be the last to know". I am on an iPad and I cannot write as much but, this is something to consider, since POTS can be autoimmune in origin. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2832614/ I have AAG, which can cause cognitive impairment, known as "amnestic mild cognitive impairment" in addition to executive dysfunction. Roughly ten percent of people with AAG also have neuropsychiatric issues. However, executive dysfunction is far more prevalent. A few months before I was diagnosed with AAG, I noticed that I was experiencing cognitive changes, which was scary. However, after treatment, I improved. I have also heard that avoiding syncope and pre-syncope also helps with cognitive issues. I will post more later (probably tomorrow). Do not be too scared about this.

I originally had POTS, which progressed to orthostatic hypotension. The cause of my problems is autoimmune. I have been one of the lucky ones, whose antibody has been discovered. I do not have any genetic diseases or syndromes, that I know of. I have heard of people with EDS who have AAG or autoimmune small fiber neuropathy. I have also heard of people with mitochondrial disease who have various autoimmune neuropathies. Immunofluoresence is used to identify autoimmunity with small fiber neuropathy, and also autoimmunity in general within tissues. However immunofluoresence does not identify the antibodies involved. Keep in mind that even if you have a genetic disease, autoimmune diseases are still a possibility. Autoimmunity is a possibility for a lot of people.

You're welcome. Here is another recipe. http://forums.dinet.org/index.php?/topic/22184-homemade-sports-drink-recipe/#entry212198

For hose fitting guides go to compressionguru.com I read in a post from guest_tearose (search for "tearose") that fitting hose is not like fitting shoes. If you gain a few pounds in water weight you may need to switch compression levels or sizes. There is no allegro brand compression hose that is 30-40 mmHg. I use compressionsale.com because they are cheap but the service is not that good. They take days for them to ship. I am sure hose is covered by my insurance. Next time I am getting Juzo brand 30-40 mmHg. I heard these are the most comfortable. I may also try to get custom fitted hose in that brand. But due to durability issues it may be a waste. Otherwise, I plan on getting cheap hose from now on, if not reimbursed by insurance. Both pairs I have have rips near the crotch.

I am 5'9" and I use the Mediven Plus 40-50 mmHg. However, they ripped near the crotch and now there is a run so I am never going to use a Mediven product again. Next time, I am also going with 30-40 mmHg as 40-50 mmHg gets painful for me after extended wear.

Salt causes your body to secrete anti-diueretic hormone (ADH), thus causing fluid retention. Anyways salt causes cramps for me, in addition to other problems. I have autoimmune dysautonomia.

Sometimes when blood flow is limited to the abdominal area, this can occur. Going in to a recliner helps. Also a wedge pillow can help if this happening in bed. Also, wearing abdominal compression (like a girdle, binder, or a vest) makes it better.

I forgot to mention, the tightness is annoying. It takes about 20 minutes every day to get used to the tightness. However, my 40-50 mmHg compression hose are too tight and can be painful, but I do not always put them on properly and they bunch up. Next time, I am going to try Juzo 30-40 mmHg hose.

I have more energy when I use to compression and I am able to sit up longer.˙I am not sure if it helps with pre-syncope. This would probably be best for a male, but may be uncomfortable. It has an open crotch so you do not have to undress every time nature calls. http://marenagroup.com/garmentstore/product/tabid/199/p-127-male-body-second-stage.aspx I would look at (non-zippered) vests, versus styles like girdles. I am sure it could be uncomfortable for a male, in addition to having to get it off. For the abdomen, 15-20 mmHg (millimeters of mercury) is recommended. An F5 certified (surgical rating) compression garment is 17-22 mmHg. http://marenagroup.com/garmentstore/product/tabid/199/p-121-a8-short-sleeve-shirt.aspx http://marenagroup.com/garmentstore/product/tabid/199/p-83-tank-top.aspx http://showcase.designveronique.com/designveronique/index.php/shop/postsurgical/men-1/non-zippered-compression-tank-top.html In addition, I would use Sigvaris hose, which provides abdominal compression with the hose, Rachel (admin) says that the 770 series is good for the heat intolerant http://forums.dinet.org/index.php?/topic/17647-compression-stocking-options/?hl=%2Brachel+%2B770+%2Bsigvaris#entry161308. Guest_tearose, who is an expert poster at compression says not to go higher than 30-40 mmHg (millimeters of mercury), or you get too uncomfortable for leg compression. I currently have Mediven Plus 40-50 mmHg and I happen to agree with her. She also says that Juzo brand is the most comfortable. You can ask for a prescription for the hose, which insurance may cover. But the other garments, probably not.

I found compression bodysuits, via this forum, if anyone is interested. Most of them have an F5 rating, which means that they have 17-22 mmHg compression (perfect for the abdomen). http://marenagroup.com/store/entity/tabid/198/c-2-womens-body-suits.aspx You want the stage 2 surgical compression, not stage 1. Stage 2 is tighter (and also non-zippered, in addition). I was looking at this http://marenagroup.com/garmentstore/product/tabid/199/p-37-2nd-stage-suit-with-suspenders-and-medium-legs.aspx. I plan on layering my legs with compression hose. This would be a true "bodysuit" for really bad orthostatic days. http://marenagroup.com/garmentstore/product/tabid/199/p-53-suit-with-bra-front-panel-medium-sleeves-and-long-legs.aspx Here is an old post on the compression bodysuits. http://forums.dinet.org/index.php?/topic/13517-how-do-you-tolerate-compression-garments/?hl=marena#entry123605 I hope this was useful.

Thank you alex74alex for posting those articles and links. _________________________________________ Most of the pooling is from the thoracic area to the abdomen first then pooling in extremities at about the same rate as normals. (from another post) http://forums.dinet.org/index.php?/topic/19810-compression-stockings/?p=183352 Going With the Flow – Blood Flow, That Is Speaker: Marvin Medow, PhD, New York Medical College Date: March 25, 2010 Recording: http://www.cfids.org/webinar/oi-march2010.wmv Slides: http://www.cfids.org/webinar/oi-slides-32510.pdf _______________________________________________ I agree that abdominal compression can be more useful than leg compression. However, for me, the results are not instantaneous. I have to wear the garments for at least 4 hours. I do not wear a binder, I want consistent (not adjustable) compression, so I know if the compression is working or not. Some girdles are as good as binders. It just depends. _____________________________________________ For leg compression, I have heard that the Sigvaris brand of compression hose provides abdominal compression (http://forums.dinet.org/index.php?/topic/8088-compression-hose/?p=74289). Juzo does not provide abdominal compression, but a lot of people find this brand most comfortable, especially when custom-made. For heat, Rachel (Admin) said that the 770 series of Sigvaris work best in the heat (http://forums.dinet.org/index.php?/topic/17647-compression-stocking-options/?p=161308). _____________________________________________ Guest_tearose (former poster on these forums) was a gold mine when it came to compression. Search tearose and compression in the search bar. I hope this helps somebody. _____________________________________________ Anyways, if it is too hot for compression, maybe you could consider a cooling vest, such as the Arctic Heat brand.

It helps, but I have to consistently wear them, and it takes a few hours to feel the benefit. I don't know if it truly reduces my pre-syncope, which is exhausting and is disabling. I wear compression garments. Not only do I wear hose 40-50 mmHg (Mediven plus), but I wear an abdominal girdle that provides about 10-20 mmHg (http://showcase.designveronique.com/designveronique/index.php/shop/postsurgical/mid-body/non-zippered-body-girdle.html). I layer. First I put on the abdominal girdle. Then I put on my underwear. Then I put on the compression hose. Using the restroom is not as much of a problem that way.

I found this regarding short term memory problems in a journal article, Ganglionic Acetylcholine Receptor Autoantibody: Oncological, Neurological, and Serological Accompaniments This applies to people who have AAG. This was in a subsection regarding people who had moderate amounts of the ganglionic nAChR antibody: Eleven patients had acute or subacute onset of cognitive and psychiatric symptoms and signs such as depression, psychosis, executive dysfunction, personality change, and amnestic mild cognitive impairment.

With type 1 diabetes, there are autoimmune diseases associated with having the condition. A person with type 1 diabetes has a 50% risk of developing autoimmune thyroid disease and a 30% chance of developing celiac disease. AAG could have caused my diabetes, by messing with the signals that innervate the insulin producing cells of my body, thus causing type 1 diabetes. Autoimmune dysautonomia and autoimmune endocrine problems are linked with the anti-peripherin antibody. I would be likely to believe that the POTS in type 1 diabetes in a child has more to do with autoimmunity than autonomic nervous system damage due to diabetes.

The onset of orthostatic hypotension was pretty insidious, but the POTS could have been orthostatic hypotension that kind of improved on its own. AAG started with bladder problems for me 19 years ago, then to gastroparesis 9 years later, then to POTS/Orthostatic hypotension 4 years later. Each time these things happened, it was always an "acute onset".

It's where you become so hypotensive that blood flow to your optic nerve is decreased. It is like "graying out" or like "tunnel vision" but you go completely blind from it. Sometimes it happens when you "stand up too fast".

I was initially diagnosed with POTS. About three years later, it progressed to orthostatic hypotension. But, I was never actually treated for POTS, so who really knows. I just managed to get by.

I am working on a Wikipedia page for AAG, along with another member. Here is a way it is diagnosed when the antibodies are not present. It consists of a variety of tests (blood and cardiac imaging), some of the names I do not know. Patients with AAG have a unique laboratory profile consistent with impaired ganglionic synaptic transmission. Levels of plasma catecholamines are low while imaging of cardiac sympathetic innervation is normal [see Primer on the Autonomic Nervous System for references]. This pattern of normal cardiac sympathetic innervation with reduced sympathetic activity is unique, and best explained by impairment of neurotransmission at the level of the autonomic ganglia. [Reference Primer on the Autonomic Nervous System-it's a book] Here is a Wikipedia page about it. We have a lot of work to do on it. http://en.wikipedia.org/wiki/Wikipedia_talk:Articles_for_creation/Autoimmune_Autonomic_Ganglionopathy

Thank you, looneymom I have never been to a physical therapist. I could ask for physical therapy when I go to my neurologist in June. My endocrinologist said I lost a lot of muscle mass over the past year due to AAG. I think I would have a better quality of life with a chair. Physical therapy would probably be a good idea, and a starting point. Where I live, there is a rehabilitation hospital that is in the top 5 in the country. So, who knows, maybe my doctor could refer me to there. They also have a good seating clinic, with RESNA certified occupational therapists. I think my doctor would write my a prescription for power assist, but I would need to go to physical therapy first. Good luck with the AAG test. Hopefully you will get the answers you want with the test results.

Naomi, Even though dry mouth can possibly cause difficulty swallowing, peristalis is an autonomic regulated function, where food is moved down, starting at your throat. So, if you have autonomic nervous system problems, this is also a possibility. Certainly bring it up to your doctor. By the way, only 50% of people with AAG (approximately) test positive for the antibody, so that still could be a possibility.