RC-POTS

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  1. Is the Hypothalamus to blame?

    Gluten and the hypothalamus and pituitary glands. The following is information from two articles about this topic. I have clipped small parts out of the article. To read full articles click on the links Gluten-brain connection Brain Inflammation and Gluten Gluten has been shown in multiple studies to decrease blood flow to the brain. Our carotid arteries carry oxygenated blood and nutrients to the brain. So when blood flow decreases (the main issue we see in a person consuming gluten that’s sensitive to it), we’re going to see results such as brain fog and maybe even migraines. So there is a connection between brain inflammation and gluten—the literature already supports this. See this for NCGS information and the brain: https://justinhealth.com/gluten-sensitivity-and-brain-health/ (derived in large part from a lecture James V. Croxton, M.A. summer 2002) Also this is an article from a Gluten Brain article. Since the fats and oils we eat become both structural and functional components of the “barrier” membranes in our bodies, such as the cell membranes, gut wall and the blood-brain barrier, another result of lipid malabsorption (from eating gluten) could be a less-reliable blood-brain barrier. In those parts of the brain where the blood-barrier is purposely “thin,” such as areas close to the middle of the brain (parts of the hypothalamus and the pituitary gland – the paraventricular regions) the insufficient or imbalanced lipid components certainly would be expected to affect many functions. These areas of the brain have much to do with basic motives and behaviors dealing with food intake, thirst, sexuality, sleep regulation, etc. Another factor is related to the concept “cerebral allergy.” This is a concept supported by just a few hundred medical doctors and psychiatrists. It became increasingly apparent in the 1990s that there are immune system defenses in the brain, and that the microglia can be recruited and even reprogrammed to do the work. Experiments show that microglia can be stimulated to “change roles” and produce a cascade of cytokines (the “cell-movers” that can produce, maintain and increase the inflammation response. Because we cannot feel brain tissue – it is not “engineered” to signal to us its own changes – hence there is no pain, itching, etc. Inflammation involves swelling, increased blood flow, increased temperature, itching or pain or both – none of this can be felt in the brain unless severe. This must be one of the strongest reasons for people with brain-based disorders denying that anything is wrong with their brains. The cerebral allergy concept depended on the assumptions of clinicians who believed that brain tissue is subject to “local Inflammation” and that this caused unusual or abnormal symptoms. The “allergens” could be proteins in foods such as alpha-gliadin in wheat, volatile gases such as fumes of toluene, certain chemicals in perfumes or cosmetics, and so on. The symptoms could be very diverse: unusual behaviors (paralleling symptoms of toxic psychosis), altered motivations (changes in hunger or sexuality), sudden emotional upsets (intense, unreasonable jealousy or inexplicable grief), etc. Any of these, along with altered perceptions and thinking, can happen. Neurons and glia function differently (“abnormally”) when disturbed by heat, pressure, pH changes and cytokine effects. In this hypothesis, celiac disease could be a specific kind of cerebral allergy, with ongoing disruption in gut tissue, and increasingly intense and diverse symptoms involving depression, paranoia, hallucinations and delusions (but not all of these at once). The good news is that celiac disease, when identified early enough, is controlled with a very careful diet. You never get over the illness, but you also never get over being glad you found out what it was. From an informal survey of about 20 people with gluten related sensitivity, >90% reported improvement from a gluten-free diet. All spoke of delayed learning prior to a gluten free diet either in themselves or their children. Some of the physiological, cognitive, and emotional symptoms they reported with dietary avoidance of gluten included: Original article: http://www.drkaslow.com/html/gluten-brain_connection_.html
  2. Very true. Eating healthy is very important and a great start to feeling healthy, energetic and well. Also every person is different. However, the new research goes way beyond just probiotics and more energy. The most important information I found in relation POTS, probiotics and gluten is as follows: 1. Gluten can cause damage to the brain and nerve fibers in those who are allergic. 2. Gluten kills off probiotics in those who are allergic. 3. Your microbes/probiotics in your stomach directly communicate with your brain. 4. There are certain amino acids which are directly related to the production and control of norepinephrine, epinephrine and other nuerotransmitters, and which are critical for the production/regulation of nero-transmitters and hormones. Some of these critical amino acids do not reach your brain when you are allergic to gluten (due to damage of the intestine). The amino acid which does not reach your brain and which is most directly related to the regulation of the autonomic nervous system is Phenylalanine. 5. According to one study I read, there is a 36% correlation between POTS patients and a gluten allergy. With most diseases a 3% correlation is considered to be a strong correlation. A 36% correlation is considered extremely significant. This is a huge key insight into the recovery of POTS for those who have POTS and are allergic to gluten. Especially since an excess of norepinephrine is present in those with POTS when they are upright.
  3. Hi Megan, I am sorry to hear about your daughter. It is bad on adults, but I think even worse for kids to deal with. I do get headaches but it usually only if I have moved around too much, lifted heavy stuff or not eaten enough calories for the day (with POTS it easy to feel full and still be calorie deficient). I think the headaches I get are from chemicals that are released when your body is under stress. Mine take a few days to go away once I get them. If her headaches are gone in the morning, it could be cause from lack of blood to the brain as well. Lying down after school for a little bit, taking an aspirin to thin the blood and drinking an electrolyte drink might help some. Make sure that it is ok for her to take Aspirin with her other medications though. Sometimes Aspirin conflicts with other medications. Also, regarding the probiotics. You are right, they are in large capsules. However, you can split the capsule apart and poor the contents into a smoothie or something so that she can drink it. Also, the RESTORE is liquid. It doesn't really have a bad taste. It tastes like water that has sat out for a while. CoQ10 increases my heart beat while standing by about 30 bpm. My heart rate is normally 120-140 while standing after taking COq10 it is 150-180. Coq10 is used by your body to help produce energy at the cellular level. While it is not technically a stimulant, it does have stimulating like effects within the body.
  4. Hi P8D, My POTS was not a reaction to the gluten itself. It is a reaction to the long term damage that eating gluten caused to my stomach. The microbes/probiotics in your stomach that gluten kills, are necessary for the nervous system to function correctly. Also gluten damages the lining of your intestines when you are allergic to it. This allows for the introduction of foreign food particles into your blood stream, even when you eat regular food and not gluten. For this reason a person will not usually notice a the impact on their POTS directly after eating gluten in a single meal. It is a longer term effect that you will notice. I did not notice much when I stopped eating gluten other than less flare ups. Even if you are allergic and you stop eating gluten you will likely not get better. Not eating gluten will help keep you from further damage to your system, but will not make you better. This is because your stomach may not necessarily be able to restore itself to health on its own. And, this is also why I started taking RESTORE. RESTORE. It is clinically proven to repair the stomach lining and tight junctions. I also went on a mission to to get the probiotics that create the chemicals your nervous needs to function correctly back into my stomach. This is tough because there are several strains of probiotics, not all help your nervous system. I did not know how to find out which probiotics I was missing and ultimately causing my POTS. After much trial and error with probiotics, I found that RAW Probiotics by Garden of Life had the strains of probiotics in it that helped with my POTS. Therefore, just not eating gluten is not enough. You must repair the damage that it has caused. I believe that it is the long term damage that it caused in my body that is causing the POTS. Especially, after my little trial with gut repair/health. If you have POTS your body is likely malnourished and also not in a state that it can help itself. Also strains of bacteria that have been killed off in our stomachs can not recreate themselves. They have to be re-introduced into the body through food or supplements. It seems that if our bodies were able to repair the damage to the stomach on their own and recreate the probiotics on their own, then POTS would be a short term issue that went away quickly. However, it is not a short term issue that quickly goes away. Most people have it for a very long time including myself. I had been gluten free for most of the 5 years that I had POTS and found no relief until I started taking these supplements. It seems as though, it is now, finally, starting to go away. Thank goodness!
  5. Hi Jessica, There are 2 types of Gluten sensitivity. The first is Celiac Disease where the allergic reaction to gluten is localized to the colon. The second type of gluten sensitivity is called Non-Celiac Gluten Sensitivity (NCGS). The allergic reaction in NCGS form causes a system wide inflammation response to gluten. Therefore, if your test comes back negative for Celiac Disease, that does not necessarily mean that you are not allergic. You can still be allergic to gluten because the Celiac test does not test for NCGS. NGCS is the form that I have. Both Celiac and NCGS have been found to be highly correlated with POTS. I did not mention above and should have mentioned that I also stopped eating gluten. I attached one article where there is more research being done relating to gluten and nerve damage in those with POTS. POTS and gluten sensitivity.pdf
  6. I used to get that feeling too. I always thought it was from low blood volume. I always thought of it like a swimming pool pump. Your veins are the pipes for the pool and your heart is the pump. If you run a swimming pool pump while the water is too low in the pool (comparatively your blood volume is too low) the pool pipes and pump vibrate a lot and are louder than normal. This may also account for why a lot of people can hear their heart beat inside their head. I am no doctor, but it just makes sense.
  7. I have POTS and have had it for 5 years now. I was playing tennis, had what appeared to be a heat stroke and have had pots ever since. Life was miserable after that and I always felt as though I was one wrong move away from dying. I have read everything I could get my hands on and tried every supplement that I could think of and every strategy that I heard of to get better. All the effort has paid off to a large degree. I no longer have to take my prescriptions on a regular basis. And my life has slowly started returning to normal. I still lay down for few minutes after a shower and can not exercise rigorously, however, I can walk for much longer distances and do a lot more physically than I could before. I am starting to feel strong instead of weak and like I am living instead of dying. I lead a resemblance of a normal life now and expect to make a full recovery. I will stop for nothing short. There are somethings that have helped me out a lot and I wanted to share them here with others, because maybe they will help someone else. (I am not a medical professional or recommending that this will help you. This has helped me and you can take from it what you wish.) Research I found that started a great path: First my good friend works for MD Anderson Hospital and sends me all the latest research on POTS. She sent me an article that showed there is an enormous relationship between POTS and Gluten Sensitivity. I knew I was sensitive to Gluten and this article and others on the damage Gluten can cause to the intestine got me thinking. Could stomach damage be the underlying cause of my condition? Through research I also found out that Serotonin is responsible for the regulation of your autonomic nervous system including body temperature, heart rate blood pressure, etc. I also found out that the majority of the Serotonin in your body is made in the stomach by yeast. People with Gluten sensitivity tend to have high levels of yeast in their system. The other major piece of information that I found out is that Gluten damages the stomach and interferes with your bodies ability to transport phenylalanine to your brain. Phenylalanine is used by your body to create and regulate norepinephrine, epinephrine and other neurotransmitters. I also found out that the regulation of the chemicals in my body that are out of whack with POTS are all regulated and created by Probiotics. My mission then became to make my gut as healthy as it could possible be and see if it affected my symptoms. I had already been taking probiotics and did not notice a difference with my POTS, so I didn't know if it would work, but there was too much evidence pointing in that direction. So I went to vitamin shoppe and found out all I could to see if maybe there were additional strains that might help my situation out better. As a result of my research on gluten and probiotics I started taking RESTORE for gut health in the morning and RAW Probiotics by Garden of Life in the evening and noticed a significant difference within 2 weeks. (This is not how you are supposed to take them, but this is what I did) The main difference that I noticed was an increase in energy and decreased heart rate. I generally just felt a lot better than I did before. This got me wondering about phenylalanine. I then went and purchased phenylalanine and after taking it noticed a significant difference in my condition as well. Mainly the chest pains and moving around doesn't wear me out as much. Other things which have also helped tremendously are: 1. Ultima (electrolyte Replenisher - this works as good as an IV) this stuff is great! Way better than gatorade. I drank it almost every day. At first I sat down and stayed down for about 15 to 20 minutes after I drank it. You can tell there is something going on inside when you first start drinking it. I would crave it though, so I knew I needed something in it. I kept with it and after about a month, I no longer had to do this when I drank it. After about a month it just made me feel better. A permanent improvement that never reverted back. Now I only drink it about once a month. 2. MultiVitamin with Thiamin. Gummies don't have Thiamin. 3. Simple Aspirin to thin blood and make it flow better. These are my go to supplements. Like I said with them I have been able to get off my other meds and I feel way better. I am up to walking about 3 miles (albeit 3 slow miles) and am still up and about the next day. I used to be bed ridden for a day or two after a walk of a much shorter distance. Things that make it worse: Vital Reds by Gundry Omega 3's CoQ10 Most other supplements that are good for your heart, because they tend to lower blood pressure and thereby increase my heart rate. My best to all suffering with this. It is a long painful battle, but there is hope. I am proof! Keep persistent in finding out where your body is in need and tend to it!
  8. How I am Combating POTS

    Reposted in Dysautonamia forum. I think this was wrong forum.