Jump to content


  • Posts

  • Joined

  • Last visited

Everything posted by klgpdx

  1. Thanks for link Issie. It was too many pages for me to sort through, but what you said about the Protozoa and diet makes total sense. My first year of college I was a gluten free, vegan and I saw a personal trainer for a while. It was the best I ever felt. It ended when a GI doc told me he saw no reason why I should be off gluten. After that, I had a hard time explaining it to my friends so I gave up. I am feeling so broke from doing all of these tests, so I am excited about just trying to change my diet again! I also have a personal trainer, which is imperative. No matter how broke I am, I need accountability to exercise. Good luck, I hope this works for us!
  2. Thanks to the topics on this forum I was encouraged to accept my naturopaths recommendation for a Lyme test. I was reluctant to spend $400 on the test, but I took the risk just I could know for sure one way or the other. My iSpot test came back equivocal and my Western Blot came back positive. The year I had the tick bite (I was about 7) was the same year as a head injury and the progression of my symptoms. Maybe both are the cause, but at least I have something I can try to treat at the root instead of just symptoms! I know Lyme is a hot topic right now, so I wanted you all to know there is one more POTsy with a Lyme dx.
  3. I was prescribed Provigil/Modafinil last October. I had to spend a ton of money on a sleep study before a doctor would prescribe it and my insurance would cover it. In the end, I hate taking it. It helps me function and get work done, but I will still be tired and the side effects are really bad for me. I can't take the full dose of 200mg without getting a debilitating headache. A half a dose will get be through 3-4 hours before I need it again, but if I take it after 1pm, I have a hard time sleeping at night. Now I only take it when I am literally falling asleep at work. Otherwise, I prefer a significant amount of coffee. This is just my experience, so if you feel like you need it, remember that everyone's biochemistry and reaction to medicine is different.
  4. I would also love to learn more. My naturopath is having me tested for Lyme. I have had two tick bites that I know about. One when I was 7 or 8, another when I was 14. I don't remember a rash the first time. The second time I had a rash exactly one year later in the exact same spot. But apparently you can have Lyme without a rash. She said the past tests for Lyme are not very accurate, the ELISA and Western Blot. I read that they are around 30% accurate. This month a new test came out called iSpot, which is supposed to be 83% accurate and not have false positives like the other ones did. She also said another patient with the same major chronic conditions as me (Inappropriate Sinus Tachycardia and Hypersomnia), and it ended up that she had undiagnosed Lyme. I am trying not to get my hopes up that there is an answer to this stupid thing. But wouldn't it be awesome if there was?
  5. The only way I can go off of coffee is cold turkey. I must have an addictive personality, because it's all or nothing. This last time, I was on a new medication that was giving me terrible headaches, so I figured if I already had headaches, I might as well take that time to give up caffeine! Totally worked. Not saying this will work for you. But you never know.
  6. This is what gets me. I have two specialist doctors telling me that POTS/IST and Hypersomnia are unrelated. But clearly many people who have POTS or IST also have hypersomnia. Which to me, makes logical sense because we expend much more energy than other people. And since they cannot figure out why I have either, it seems especially strange that an otherwise healthy person would have not one, but two "idiopathic" conditions. All of my bloodwork comes back perfectly. I eat organic foods 95% of the time, and I exercise. The only reason I hope that they are separate, is that maybe my hypersomnia can be fixed if the clinical trials with the drug in the article pan out. My tachycardia is really only a problem because I am tired all of the time and can barely perform my job because of it. If something could help me wake up, I would be fine! Provigil helps a little to wake me up, but the side effects prevent me from taking a full dose.
  7. My sleep study showed that I have a perfectly healthy sleep pattern, yet I am still falling asleep all day long, which is not normal. I almost wish there was something going on during sleep so it could be fixed! This new treatment won't be available after more clinical trials, and that is only if they get support from the pharma company. This is EXACTLY how I am. If I absolutely have to be somewhere before noon, like my job... I am always 10-20 minutes late because I can't pull myself out of it until my adrenaline kicks in when I realize I am late.
  8. After a long battle trying to get doctors to help me wake up in the morning, I was finally diagnosed with idiopathic hypersomnia. My cardio and neuro won't acknowledge that it may be related to IST/POTS, but whatever. However, this article came out this week about a possible antidote to hypersomnia, which really has me wondering about things. For those POTSies that have hypersomnia (or are long sleepers without a diagnosis), you may be interested as well. Not sure if it applies to us, but I hope it does, because it means that help is on the way! Okay... in a couple of years when clinical trials are over. http://news.emory.edu/stories/2012/11/antidote_for_hypersomnia/campus.html BTW, I was finally prescribed provigil (modafinil) after 6 months of asking doctors about it. It just took spending a ton of money on a sleep study to prove I needed it. I can't take a full dose yet, because it gives me terrible headaches. But even a little boost from 100mg is helpful.
  9. I recently saw a homeopathic doctor who recommends Oil Pulling. I'm too tired to explain it, but if you do an Internet search there are a ton of people who swear by it for a whole ton of problems, not just dental. I had a hard time getting used to it, but I intend to try it again soon. My teeth looked immediately whiter though! ...and I also have TMJ. It's a pain in my neck, literally.
  10. November follow-up?? That doesn't seem okay. I forgot to say that almost ever doctor, naturopath, and chiropractor has a different way of diagnosing food allergies/sensitivities/intolerances. And they swear theirs is the ONLY way. Therefore an elimination diet is usually recommended. Or work with one doctor as long as they are helping you get better, and then move on. Because one doctor may tell you to eliminate all those foods forever. Then another may prescribe enzymes to digest protein or something else, and then you could eat those foods. But then another doctor might say that actually you are intolerant of a different food and that by eating it your digestive system is weakened and causing the other sensitivities. Can you tell I've wasted a ton of money on doctors? I do promise that once you figure out what you should eliminate you will feel better. For instance, I eliminated Potatoes and Wheat two years ago and haven't gotten sick once (a cold that is, clearly I still have POTS)... And I work with kids!! An endoscopy used to be how they tested for celiac, I'm not sure if it still is. I was tested 8 years ago, so things could have progressed.
  11. Thanks all! I'm just really hoping I can pull through for two weeks before the sleep study. I want to take Provigil, which helps people wake up, but my naturopath and cardiologist can't prescribe it. Today I told my new principal that I was concerned about the reporting time and that I'm not a morning person. She just kind of smiled with a worried look. I want to avoid the "medical condition" conversation for as long as possible. Although part of me thinks I need to touch base with HR ASAP before I start being late and get written warnings. I hate to be pessimistic but I have 26 years of being late to know what's likely going to take place! And yes, it is great to be able to work. I need to remind myself to be grateful for that. I have just never been able to move forward in a career because bosses like people who come to work early and stay late, regardless of the fact that I always outperform my colleagues during normal work hours. C'est la vie. I'm learning to love my current situation and prospects in life. I'm making POTS work.
  12. If you are currently eating wheat and want to be tested for celiac, keep eating gluten until the test. Otherwise, if you go off it, you will feel horrible when you go back on it for the test. That is true for almost anyone, because 70% of the population is gluten intolerant. And if you are celiac, do a blood test first. It tests for a specific gene. If you don't have it, you probably won't have to do an endoscopy. Here's a good article on why wheat is so bad in general: http://www.cbsnews.com/8301-505269_162-57505149/modern-wheat-a-perfect-chronic-poison-doctor-says/ It also seems like you may have a problem digesting protein if you are sensitive to eggs and nuts. I'd suggest seeing a naturopath to help distinguish between allergies, sensitivities, and intolerances.
  13. A first for me on this forum, I really just need to vent. I just started a new job and career two months ago in education. My school is a late start school so I have been able to get out of bed and to work on time. Gradually I have become more tired after work, taking naps immediately when I get home. But I love it, and I know I can make it work. Or could make it work. This week I was told I am going to be split between two schools, and the other school starts an hour earlier. This means two to three days a week I have to get there at 7:30. No one understands why this is a problem for me. My dad just keeps telling me to go to bed earlier or wake up earlier. He doesn't get that I CAN'T! Never in my life have I been able to be somewhere daily before eight. In high school I missed about 20% of school because I didn't want to be disciplined for being tardy, so I just didn't go. If it was every day I might be able to set a good routine, but the fact that is half time actually makes it worse. I can't stop crying just thinking about it. Which is just ridiculous to begin with. Luckily, I am having a sleep study done in two weeks. I just hope I can make it to work on time until then. I know this was just to vent, but if you have any tips for getting out of bed when you feel like death... please let me know.
  14. I know this is an old post but I wanted to add info. I did micronutrient testing almost a year ago but got the results over the phone. For some reason that failed to relay that I have a major B5 (pantothenate) deficiency. I am in the bottom 7th percentile. I recently moved so I had to get all of my medical records to take with me. When I read the description of the symptoms I nearly screamed. "Pantothenic acid plays vital roles in energy production from foodstuffs...Pantothenate deficiency symptoms are thought to be uncommon because of widespread distribution in all foodstuffs, however, symptoms may include fatigue, depression, burning feet, dermatitits, burning or pain of arms and legs, anorexia, nausea, indigestions, irritability, fainting, hair loss, increased heart rate (!!!!!!!!!), and susceptibility to infection." I cannot believe my doctor did not red flag this considering my main complaint forever has been that I am just SOOO tired.... not to mention "increased heart rate." It's only been two days, but I already feel better within 30 min of taking 500mg of d-calcium pantothenic acid. Since I started a new job last week I fast tracked a cardiologist appt for this Wednesday so I could beg to go on Provigil, but now I am rethinking that. For the record, someone mentioned a possible genetic component. I think it must be, because I have changed my diet a million times and have felt this way forever. And, I have a genetic condition where I have extremely low LDL cholesterol and there is a disease where the two go together - pretty sure I don't have that though, otherwise I might be dead by now.
  15. This is my favorite gluten-free cookbook: http://www.elanaspantry.com/the-gluten-free-almond-flour-cookbook/ Other gluten-free cookbooks replace wheat with other grains, but they make me kind of nauseous. With almond flour, however, you can eat a seemingly unhealthy food and feel great after. Paleo diet resources would also be something to look into.
  16. Dana, thanks for the link! I don't know the exact gene mutation, I think I am going to see a genetics counselor in a few weeks to confirm it (or do 23andme). It would make total sense about my hormones being out of wack, which is why my doctor has been harping on the subject for so long. However, they are are all normal. Though my dopamine was literally off the charts low. Charmed, you definitely sound like the opposite of me, there must be an opposite gene mutation. I basically have a diet of meat and fat just so I can get my cholesterol levels as high as possible.
  17. For the past year my naturopath has been concerned I have an eating disorder because my LDL levels are below 20 (the ideal number is 100). For the record, I kept a diary showing I eat more than 2000 calories a day and twice as much fat as recommended. Finally, yesterday we found out I have a possible gene mutation that causes chronically low leves of LDL, it's called hypobetalipoproteinimia. Doctors still don't know much about the effects of low cholesterol... Of course. It has me wondering if it my be a possible reason for my IST. Just curious, anyone else have low cholesterol levels, or know anything about it?
  18. My theory is that POTS is not caused by low cortisol levels, but rather low cortisol levels are actually a result of POTS because we burn through our adrenals just by standing. My saliva test showed low cortisol and nearly non-existent progesterone. I guess when you run out of cortisol your adrenal glands steal progesterone to make up for it. So I feel like treating the low cortisol levels would definitely have an effect on overall energy, but it wouldn't solve the route cause. In my mind, it would actually perpetuate the problem, but anyway, that is just my THEORY. When I took desiccated adrenal from Standard Process, as recommended by my ND, I did feel slightly better.
  19. I am so sorry!! I second McBlonde, big hug!
  20. Hi Anoj! I hope it all worked out! I know the day I quit my horrible job was such a huge relief, I had far less headaches and way more energy. But in searching for jobs myself, I know how easy it can be to talk yourself out of something before you even have the opportunity. Good luck to you either way!
  21. My naturopath actually recommended it for POTS. The idea of taking adderall freaks me out, but I start a new job in four weeks so I'm desperate. Good to know there are a lot of positive responses!
  22. I was on 14 hour flight from Fiji when I had a major pre-syncope attack. I was stuck on the floor of the bathroom for about 5 minutes before I barely made it back to my seat. It was right after the liquid ban, and before you could even bring your own water bottle aboard...even if you bought it inside the terminal. The flight attendants would only give me 3 oz of water at a time, and took forever when I hit the button. The only thing that saved me was that I had an entire row to myself to lay down. I fly a lot and usually have some issues, but nothing like that. It made me think the key is to hydrating...also to not take such long flights when possible.
  23. Denver is off the list for now, but thanks for the update! We are either staying in Portland or moving to Kansas City where we are from originally. I left because of the summer heat. But I think more sun in the winter would be worth it. I am really thinking Portland is bad for POTS.
  24. She said that she is keeping an eye out for MS symptoms because she is worried that I might get MS based on my symptoms. I don't think she is at all right on that though. Although I guess about 50% of people with MS have POTS.
  25. Okay, I asked my naturopath about Provigil yesterday and she said it is often used for Parkinson's and MS patients. She also said you can build up a tolerance to it. So she wouldn't prescribe it because if I do get MS she'd like that drug to be an effective option. Apparently POTS symptoms mimic early onset MS? I don't know... I kind of think she overreacts sometimes.
  • Create New...