Evergreen Posted October 31, 2015 Report Share Posted October 31, 2015 My symptoms began this summer. My neurologist suspects POTS. I've been trying to completely correct my diet to include only healing foods in the hope that will relieve some of the symptoms. I was getting steadily better until I decided to try some coconut oil. My progress plummeted and I'm back to feeling completely horrible. It's been days and I'm still not progressing as I was before. I'm not sure if it is the coconut oil or just spontaneous. I can't find anything about POTS and coconut oil reactions so I was wondering if any of you have tried it?BTW, I've been keeping notes and this is what I've been doing:DailyHerbal tea-peppermint-ginger-dandelionAloe VeraHimalayan sea salt Salad -arugula/broccoli -onion-garlic-pumpkin seeds-cayenne-olive oil-walnuts-tomatoes-carrotsMeat-chicken-chuck roast-wild salmonRecumbent bike (2x)5,000 IU Vitamin DA/C off Heater on 65°-70°OccasionalCoffee/green teaLemonadeCinnamon sticksLicorice rootSpirulinaHerbal cough dropsBanana/pumpkin seed/salt/milk smoothieYogurt with walnuts (& dark chocolate)Removed GlutenWineApple cider vinegar Does anyone have any thoughts about the coconut oil or anything? Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted October 31, 2015 Report Share Posted October 31, 2015 Hi, Evergreen,Are any of the supplements new? I think I remember reading in your last post that you had weight loss, is that where the dandelion comes in? I don't know a great deal about it, but I researched it and discussed it w/ my NP when I wanted to take it for UTI's/Kidney Infection. She said people with any allergies to ragweed or similar plants can have a pretty terrible reaction. Also, I'd need to stop it when I started my antibiodic because it decreases the effectiveness and it can also interfere with medications metabolized through the liver.Did you have a tilt table test? I was also wondering if you were able to follow up with a cardiologist and if you've worn a 24 or 48 hour holter monitor as of yet? I'm sorry to hear that you are feeling so poorly. Did your neuro run any bloodwork that came back abnormal at all? Quote Link to comment Share on other sites More sharing options...
dancer65 Posted October 31, 2015 Report Share Posted October 31, 2015 I have used coconut oil both externally for skin problems and occasionally cooking for many years, I haven't had a problem with it that I know of.I am sorry you feeling ill again, it's very frustrating to go backwards. I seem to have a couple of good days then feel so fatigued I can't function this can last a few weeks then I seem to improve again, I am slowly learning to go with the flow and accept the bad days better than I use to"I think Sarah made a valid point, about the dandilions. Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 1, 2015 Report Share Posted November 1, 2015 I have a friend that is allergic to coconut. The oil is the worst for her. She doesn't have POTS, though. Quote Link to comment Share on other sites More sharing options...
Evergreen Posted November 1, 2015 Author Report Share Posted November 1, 2015 Sarah-I've been having dandelion tea for a long time. It hasn't given me any adverse reactions. The only thing that's new is the caffeine. My neurologist said my head pressure may be low pressure headaches which can be helped by caffeine. I haven't been able to tell if it helps or harms my head yet but I stopped it because I think it has elevated my already fast heart rate. Other than that the only change recently was the coconut oil which each time I try it has made me feel miserable. My last visit to the neurologist was 2 weeks ago. They said they would schedule the tilt table test but I think they forgot about me. The last visit was pretty discouraging. I dont feel like they are interested in helping anymore so I'm just trying to heal on my own now I guess. I had an MRI with contrast. I had a 48 hr hltter, I had an echo and a ton of blood work. Everything came back normal (except slightly low testosterone levels which my neurologist said doesn't matter)Dancer-ThanksKaty- How does she react? For me it doesn't give me any sort of anaphylaxis or hives or anything like that but a few different times I've taken it and I've just felt horrible for days. Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 1, 2015 Report Share Posted November 1, 2015 She gets hives if it's on her skin and throat swelling if she eats it.Have you looked into Mast Cell Activation Syndrome? If you have a lot of allergic type symptoms or reactions to things but the reactions are not "classic" allergy type symptoms (for example, GI upset, headache, joint pain), MCAS might be worth investigating. Quote Link to comment Share on other sites More sharing options...
statesof Posted November 1, 2015 Report Share Posted November 1, 2015 Hey evergreen I've had some different food related reactions that I'm not quite sure what to make of; if I eat anything with too much potassium (coconuts and coconut water is included in this) then it always causes me a weird migraine like neurological reaction like my brain feels almost like it is wrapped in webbing and visually I'm more sensative to lights/ flashes. Caffeine I cannot tolerate in any amount and it immediately just makes my head feel bad, and more recently I've found foods that have magnesium causing the same issue, not sure if that helps. Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted November 1, 2015 Report Share Posted November 1, 2015 Hi Evergreen,I don't seem to tolerate coconut oil either. Last year I think it was my sister recommended I use coconut oil as a moisturizer. She swears by its health benefits. She eats it and slathers herself in it. Well it made me extremely ill. Dizzy, weak, nauseated etc. I had to get in the shower and scrub it off. Eating it makes me really nauseated as well so for whatever reason coconut oil brings on very problematic symptoms for me. Could be a mast cell issue. Quote Link to comment Share on other sites More sharing options...
Evergreen Posted November 2, 2015 Author Report Share Posted November 2, 2015 Would MCAS show up on blood panels? I've had a ton of blood tests and they've all come back normal. Before getting sick I used to have coconut oil regularly, topically and orally and it didn't hurt. It certainly seems to be the cause of my problems recently though. Thank you everyone for your help.Psalm-How long after taking the coconut oil did you start to feel better? I took it about four days ago and still feel miserable. I'm not used to being chronically ill. I can't believe how much I took for granted being able to take a walk in the park. I've barely been able to leave my house except for doctor appointments for months. I just want to feel better. If anyone has any ideas, I'm open to hear them. I don't know what caused this. I used to be hiking every day. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted November 2, 2015 Report Share Posted November 2, 2015 I just saw ent for allergy panel. Since pots struck I've had odd reactions to food, environment and fibers. Keep ya posted. Good advice on the thread! Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 3, 2015 Report Share Posted November 3, 2015 http://www.wjgnet.com/2218-6204/full/v3/i1/1.htmThis link is a very thorough paper on MCAS...the most thorough I've found actually. It is long but that's because MCAS is a rare and very complicated illness and especially hard to diagnose. Basic bloodwork will almost never even hint at MCAS. Quote Link to comment Share on other sites More sharing options...
Evergreen Posted November 3, 2015 Author Report Share Posted November 3, 2015 Thank you everyone Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted November 4, 2015 Report Share Posted November 4, 2015 Evergreen the negative effects from the coconut oil only lasted about four hours or so. I'm sorry you're feeling so poorly. I hope your health improves soon. Quote Link to comment Share on other sites More sharing options...
Evergreen Posted November 5, 2015 Author Report Share Posted November 5, 2015 Thanks psalm Quote Link to comment Share on other sites More sharing options...
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