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Looking_for_light

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Everything posted by Looking_for_light

  1. Foods said to be good sources of potassium - Bananas, oranges, cantaloupe, honeydew, apricots, grapefruit, prunes, raisins, dates Potatoes, Swiss chard, boy choy, beetroot greens, spinach, broccoli, acorn squash, sweet potatoes, mushrooms, peas, tomatoes, cucumbers Chickpeas, lentils, peanuts, beans - including soybeans and lima beans
  2. @albertspa Great that discussion on this important topic is ongoing! Found a study and more info on the helpful-sounding portfolio plan for you - https://pubmed.ncbi.nlm.nih.gov/29807048 It's meant to offer a viable alternative to statins (which unfortunately reduce Q10 in the body and are known to cause side-effects such as musculoskeletal pain) for some. From https://easyhealthoptions.com/portfolio-diet-statin-alternative-lowers-cholesterol/ - 'The Portfolio Diet is based around plant foods. If you typically eat 2,000 calories per day, here’s what the Portfolio Diet would look like for you: Plant protein (50 grams a day): tofu, soymilk, beans, lentils, tempeh, edamame, etc. Nuts (45 grams a day): walnuts, almonds, cashews, pecans, pistachios — basically, all of them, even peanuts. Nut butters count too. Viscous soluble fiber (20 grams a day): asparagus, oats, Brussel sprouts, barley, eggplant, okra, apples, berries, flaxseed, oranges, and psyllium. Plant sterols (2 grams a day): wheat germ, wheat bran, peanuts, olive oil, almonds, and Brussels sprouts. You can also get them in fortified foods or supplements'.
  3. @albertspa The LIFE Diet The Low Inflammatory Foods Everyday (LIFE) Diet lowers a blood marker for inflammation called C-reactive protein (CRP) and boosts heart health. Based on dark green, leafy vegetables, this whole-food, plant-based diet also raises your body’s levels of a substance called beta-carotene. Beta-carotene is anti-inflammatory and fights free radicals, which are linked to many diseases. LIFE may reduce the risk or seriousness of heart disease and other chronic diseases that stem from inflammation. Inflammation is also a migraine trigger. Dark green, leafy vegetables are at the heart of this diet. The body is good at getting the beta-carotene from these foods: Arugula Bok choy Broccoli Brussels sprouts Cabbage Cauliflower Collard greens Endive Kale Spinach Swiss chard One to add to your list as it's an excellent piece of guidance - greens are great! Seeking to lower inflammation is a must for sufferers. The info is taken from - Can Plant-Based Diets Help Migraine? (webmd.com) Migraine seems a common issue within the community so it should be really helpful : )
  4. @albertspa Great topic! Wholefood, Mediterranean-inspired, vegetarian (no animal products bar eggs and dairy) diets. In past posts, others have said they also choose similar diets. Contains lots of roughage and antioxidants... etc. Olive oil on salads etc. To quote a phrase 'food isn't medicine', but an unhealthy diet full of ultra-processed foods, HFCS and additives would seemingly make matters for those with the condition worse. Eating healthily is hard for many for various reasons though (it should not be a privilege, but in reality, it sadly is). Of those mentioned - Portfolio diet (Adds cholesterol-lowering foods like soy, nuts, and fiber) [4] - sounds great. DASH diet (Reduces sodium, promotes fruits, veggies, and whole grains) [4] For many with the condition, salt needs to be increased not reduced. Agree with all the other helpful comments above too, including @MikeO on keto - it sounds very extreme and really hard to follow and manage for chronically ill people, unless specifically indicated - regimes like that should be done under medical supervision. Even low-FODMAP should be guided. For those of the hyper subtype, wonder if norepinephrine-increasing foods are better avoided. Seems most of those are animal products like meat, and fortunately there are now many really healthy alternative protein sources (non-GM soy - e.g. tofu and tempeh, peas, beans, legumes, lentils, quinoa, seitan... etc, if people can access and consume them). Less expected sources, e.g. potatoes and avocados, contain a good amount of protein as well. Lacking protein is rare for those in the West. More studies are always needed. Wishing you well with your research @albertspa.
  5. Both excellent sources of info - Vegetarian diet improves insulin resistance and oxidative stress markers more than conventional diet in subjects with Type 2 diabetes - PubMed (nih.gov) Plant-based diets for the prevention and treatment of type 2 diabetes - Plant Based Health Professionals UK
  6. For anyone interested (likely of interest to @Macho319 too), these are all about all the positive effects - Second-meal effects of pulses on blood glucose and subjective appetite following a standardized meal 2 h later - PubMed (nih.gov) Whole Grains, Legumes, and the Subsequent Meal Effect: Implications for Blood Glucose Control and the Role of Fermentation - PMC (nih.gov) The Brilliant Bean - Plant-Based Life Foundation (pblife.org)
  7. Wow, just heard this about legumes and pulses - SO cool! They do a mighty job of helping with blood sugar control. If new to beans, build up slowly to allow the digestion to adjust. Well worth trying canned chickpeas, peas, lentils, aduki, black beans, flageolet etc in the hope they help. Some ideas - Mashed frozen green / tinned yellow split peas on toast, preferably wholemeal. Flageolet beans in leaf salad with olive oil (and cider vinegar if tolerated). Roasted chickpeas (just minimal oil and salt) are delish! If suited, dash of cider vinegar / lemon with them to aid digestion.
  8. This excellent research covers lots of aspects of the subject and what may help - Plant-Based Foods and Their Bioactive Compounds on Fatty Liver Disease: Effects, Mechanisms, and Clinical Application - PMC (nih.gov)
  9. This site has great info and recipes for newbies hoping to go in the direction of plant based or vegetarian - Going-Veggie...for-health-and-wellbeing.pdf (vegsoc.org) Going-Veggie-What-to-Eat.pdf (vegsoc.org) Eatwell_guide_veggie_DR_EDIT_MAR2018 (vegsoc.org)
  10. Great piece of research on the topic - A Healthful Plant-Based Diet Is Associated with Lower Odds of Nonalcoholic Fatty Liver Disease - PMC (nih.gov)
  11. @Macho319 So happy to be of help, and thank you very much for your kind, greatly appreciated words on what is an extra difficult day. Sending you lots of support for your journey - you'll no doubt inspire others along the way too Macho. You take care of yourself.
  12. So glad to be of help Mike. Sadly, the feeling of food not being a friend (spot on description) is one we know all too well (albeit not due to the same issue) with dreadful consequences. Will try to add more resources to help and for anyone else interested...
  13. Hi all Very interesting points re: surgery on a past post. Further to this, hopefully people can please provide some info / thoughts on the following: Which concerns need to be considered regarding surgery (especially of long duration) for those with MCAS? Which concerns need to be considered regarding anesthesia (especially long duration) for those with MCAS? Do extra surgical provisions need to be made for people with MCAS? Generally any extra risks surrounding surgery for people with MCAS? What would be the considerations for local anesthetics for those with MCAS? What would be the considerations for sedatives for those with MCAS? Very sad to say, but MCAS is unfortunately dismissed (aware it's fortunately not that way elsewhere) so most HCPs won't know, or have any training and it's up to patients and relatives etc to try to advocate, hence the above. Thank you all so much.
  14. Thank you all so very much for the really appreciated input and thoughts. Trying to get informed way in advance, as unless it complicates to an emergency (please, no!), the wait and terrible suffering will be extremely long due to the horrendously dire state of things. The severe strain and stress of it all on us both is inevitably tremendous. Thanks again - means such a lot.
  15. So interesting on this topic - Plant-Based Diet for Diabetes: What About Carbs? - Center for Nutrition Studies An excerpt - Plant-based dietary patterns are associated with increased insulin sensitivity, not higher blood sugar.[1] This means the body is able to move sugar out of the blood and into cells more efficiently, where it’s used to make energy.[2] Also, the fiber in whole plant foods slows the release of sugar as food is metabolized, preventing the blood sugar spikes associated with low-fiber refined carbohydrates. Overweight and obese individuals who adopt whole food, plant-based diets can also benefit from losing excess weight, which in turn increases insulin sensitivity. Keeping insulin at reasonable levels regulates hunger by allowing leptin, the satiety hormone, to trigger feelings of fullness.[3] Combined with fiber’s satiating effects, this can prevent overeating and make it easier to maintain a healthy weight. Weight loss combined with plant-based eating patterns may also reduce the amount of fat stored in the liver[4]—an independent risk factor for type 2 diabetes.[5] These effects may be why carbohydrates from plant-based foods are usually shown to be protective against diabetes when compared to highly refined carbohydrates.[6] Really hope this helps. Sending very best wishes to you Mike.
  16. So interesting on the topic - How to improve fatty liver disease with a plant-based diet (veganfoodandliving.com) Really hope this helps, sending very best wishes to you Macho.
  17. Hi all Very interesting points re: surgery on a recent post. Further to this, hopefully people can please provide some info / thoughts on the following: Which concerns need to be considered regarding surgery (especially of long duration) for those with PoTS in general? Which concerns need to be considered regarding surgery (especially long duration) for those with the hyperadrenergic subtype? Which concerns need to be considered regarding anesthesia (especially long duration) for those with PoTS in general? Which concerns need to be considered regarding anesthesia (especially long duration) for those with the hyperadrenergic subtype? (non-adrenaline-based anesthetic etc?) Which concerns need to considered regarding surgery and anesthesia (especially long duration) for those with a tachyarrhythmia? Which concerns need to be considered regarding surgery and anesthesia (especially long duration) for those with hypertension? When a patient isn't allowed eat and drink before surgery, but very easily dehydrates, are there any general recommendations on giving IV fluids before operations? When a patient isn't allowed eat and drink before surgery, but very easily dehydrates, are there any general recommendations on giving IV fluids after operations? Do extra surgical provisions need to be made for people with PoTS? Generally any extra risks surrounding surgery for people with PoTS? What would be the considerations for local anesthetics for those with PoTS? What would be the considerations for local anesthetics for those with the hyperadrenergic subtype? Very sad to say, but dysautonomia's unfortunately little known and considered (aware it's fortunately not that way elsewhere) that HCPs mostly won't know, or have any training and it's up to patients and relatives etc to try to advocate, hence the above. Thank you all so much.
  18. @RecipeForDisaster After seeing it discussed in https://www.dinet.org/forums/topic/32485-no-treatment-works-for-me Do you possibly know if: - Eosinophil 0 count is rare or not? - How many times this score has to be repeated to confirm high cortisol? - Have you ever managed to have a specific cortisol test to confirm it's high? - If so, was it a cortisol blood test, or the one where four saliva samples in a day are tested? - Have doctors acknowledged a count of 0 is linked to high cortisol, or was that gleaned from your own research? - Can high cortisol be connected to the hyperadrenergic subtype? - Has the hyperadrenergic subtype been linked to Cushing's Disease? Thanks so much in advance.
  19. Sadly, seems that uncontrolled persistent severe pain (from other conditions) very much impacts the chronicity and severity of Hyperadrenergic PoTS symptoms? Anyone know some of the mechanisms of this - physical stress on the body, extra inflammation? Other factors? Anyone know if the Hypothalamic-Pituitary-Adrenal (HPA) Axis relates to this situation? Anyone know of any info / studies / papers etc on this or similar topics? Which types of pain is PoTS itself known to cause or be connected to? (thinking in some, possibly migraine attacks, musculoskeletal... perhaps depending on other conditions also present?), Many thanks.
  20. So sorry to hear - we can totally empathize with you all - with the hugely detrimental pain aspect and woefully inadequate care too! We hear you. To say life is extremely challenging is a massive understatement. Sending thoughts your way. Seems that uncontrolled persistent severe pain (from other conditions) impacts the chronicity and severity of Hyperadrenergic PoTS symptoms? Anyone know some of the mechanisms of this - physical stress on the body, extra inflammation? Other factors? Anyone know if the Hypothalamic Pituatory Axis (HPA) relates to this situation? Anyone know of any studies / papers on this or very similar? Which types of pain is PoTS itself known to cause or be connected to? (thinking in some, possibly migraine attacks, musculoskeletal... perhaps depending on other conditions also present?), Hope things can improve for you all. Many thanks.
  21. IV fluids sound a total gamechanger, but very sadly, not an option here - heartbreaking! Did either the CCB or BB alone help the shakiness and tremors or only the two meds in combination? Many thanks.
  22. Hi all Anyone suffer debilitating chronic bouts of shakiness due to hyperadrenergic PoTS (H P)? What is the mechanism of this terrible problem in this patient group? Is it the body trying to clear excess catecholamines or something totally different? Anyone know any papers / research specifically on this? Which of the meds to help symptom management that are more targeted to H P (CCB's, BBs, centrally acting anti-hypertensives etc) may help this problem? Anyone find that Corlanor (Ivabradine) did anything to reduce this symptom in addition to slowing HR? Many thanks. Sending best regards to you all
  23. Hi all, can only hope things are better for you all than they are for us. Life has inevitably become even more difficult and challenging (understatement). Know meds are individual, but anyone with hyperadrenergic PoTS (H P) tried an acute triptan medication for episodic migraine attacks, and if so, did it worsen H P symptoms or induce other side-effects? Asking this specifically due to symptoms in H P cases usually involving vasoconstriction - could the constriction action of this type of medication generally cause extra problems for H P patients?! (e.g. chest tightness due to the constriction sounds to be a concerning common side-effect for anyone taking them) Are there any studies on H PoTS patients taking them? Anyone taken any other meds specifically for H P and found they incidentally also helped this terrible problem? Anyone with MCAS tried triptans for episodic migraine attacks? If so, was the med a trigger for a reaction? Anyone with H Pots and/or MCAS had any luck with any other medications specific to migraine taken at the onset of an attack? Sadly, severity is such that standard analgesics don't help. Thanks so much in advance for any thoughts. Take care. Sending very best wishes to you all as always
  24. Regarding ablutions, anyone with H PoTS - do baths (no shower present) bring even more symptoms, such as extra OVERWHELMING extra fatigue and weakness, especially leg, but bring warmth to the body, esp ice cold extremities? Is this due to vasodilation? Anyone with mcas - are baths a big trigger?! Thanks!
  25. @rtoth256 You're among friends here - we've got your backs. We've no offline support, which inevitably makes things even tougher. In your wife's case, TTT was used to arrive at PoTS diagnosis - wonder if ppl here know if that definitive diagnosis rules OH out, as could be wrong, but recall that PoTS and OH don't exist in same person? OH doesn't fit our case. Hope this helps.
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