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Posts posted by McKenzie

  1. I have a sensitivity to electromagnetic fields since I hagan this POTS flare. Being near something that puts out an electromagnetic field makes me extremely weak and nauseous almost immediately. A laptop computer, our stove, my old clothes iron are all items that get me. My nutritionist gave me a magnet that I wear inside my bra that helps block the effects. The difference is amazing, but I still try to avoid being exposed to EMF's as much as possible. An electric blanket is out of the question for me!

  2. I had it done pre-pots, although I think I've really had POTS most of my life, just not to this extent. Anyway, my nearsightedness and astigmatism were mild. After the surgery, I had 20/20 vision. But after only a couple of years my vision reverted back to almost what it was before and now that POTS has flared I have double/blurry vision at times as well. Not only that! But I have had to see a specialist who diagnosed me with Vertical Heterophoria and now I must wear my glasses all the time, even to read when I wouldn't normally need them. My vision also continues to change often and rather quickly. Check out www..VSofM.com.

    My point in telling you all this is just to warn you that us POTSies vision isn't very stable and changes easily. Does your laser surgery place offer a guarantee to adjust your vision later on if necessary?

    Best wishes! Let us know how it goes ( or how it went ). :)

  3. Hi! I had the sonograms on my leg veins. I was told that these superficial veins should have only 1/2 second of reflux, mine had 4 seconds of reflux....meaning that the fluid in the veins should have evacuated in 1/2 second. The Dr. who did the test said that they go inside the veins and collapse them with heat. That way the body by-passes them. He seemed to think that it would help with the pooling issues with POTS. My PCP on the other hand didn't think it would offer much help for the condition because POTS is a problem with the deep veins, not the superficial veins. If anyone has tried the procedure with good results, I'd sure like to hear your story!

  4. I'm so weary and sleepy that I usuly take 2-3 naps each day to get by. I find myself falling asleep at my desk and have to go lay down. I usually set a timer for 15-20 minutes with a longer nap over the lunchtime. I take another nap at the end of my workday before attempting anything else. I find that if I don't allow myself to nap, the nausea gets the best of me.

  5. I take Imitrex for my migraines. I only began having migraines a year ago when my POTS symptoms began. My doctor told me that you can't take it with Welbutrin, it gives some really weird side effects that you just have to wait to wear off, so be careful with that one. I also took it with Diamox one day and that made the migraine worse. Last time I had a bad migraine, I laid on my back with a pillow rolled under my neck and a 5 pound rice pack on my head. That was the only position that would help ease the pain. I have to remember to take my Imitrex early on or it doesn't help at all. Good luck!

  6. The moon was beautiful last night, but the sky was a bit hazy. I don't know if it's the full moon or that I overdid it yesterday, but I woke up with a migraine and I'm still in bed. So glad it's Sunday so I have a day to recover. Hoping tomorrow is better. :)

  7. Hi Aaron,

    Midodrine was the first medication my doctor tried. He gave it to me immediately after my positive TTT and I've been on it ever since. It seemed to help me quite a bit. I started with 2/day and then increased it to 3/day. It seems to help quite a bit. I was better able to get out and go for a walk, whereas before, I could barely get out of bed. The second medication he added was Mestinon and I'm still on that as well, I can't really tell if it helped me or not, I'm going to try to reduce the dose and then go off of it completely if I don't notice a difference. I'm just getting ready to try Florinef, hoping I don't have a reaction to it. :(

  8. I've never tried Turmeric, but I've been on LDN for a few months now with good results. We built up slowly to the full dose of 4.5 mg/ day. I also had a noticeable difference in the brain fog, it gave me my personality back. Also, my fatigue is much better. I still have times when I'm fatigued but not as bad as before. I just hope it continues to work for me.

  9. Hi Brenda,

    I don't know what it's like to have a child that has a chronic illness. However, I do have 6 kids (5 of them adults) and I totally understand your Mother's Heart. I'm sorry she has to deal with POTS and miss out on so much life and I'm sorry you have to see her suffer this way. Hopefully this will be a short set back and she'll be back on her feet sooner than in the past. I have experienced the same setbacks. I had a great 3 week period where I was able to work almost full time and even had energy to cook for my family and clean up the dishes before crashing. Then last week it got me again. My routine was different, I was in a class in a small room with 40 computers and 20 monitors. My guess is that the electromagnetic field got me. I wear a flat magnet that helps block the effects, but it got me good. I'm doing my best to get back to my regular routine and back to my normal self. The thing that really struck me is that when I start to feel good, its like my personality comes back. When I'm in a flare, I'm not the same person at all! I do hope that she will improve quickly, keep a positive attitude and I will lift her up in prayer!

  10. Odd that they didn't tell you to fast prior to the tilt table test. I just had one in December and was told to fast from food AND water after midnight. I do think it would make a huge difference. One other lesson learned: over the years, you have learned to manage your symptoms well. I found myself going into survival mode during my test, but then realized that I had to stop fighting it and just let the faint come. Don't fight it... Otherwise you may not get a proper diagnosis.

    I'm sorry you've lived with this so long with little help from your doctors. Praying for answers for you!

    Once I got a diagnosis and started on some meds, I started improving, slow, but still improving :)

  11. @Marti, great advice to look for a compounding pharmacy and ask them who to go to. I actually get 3 medications from my compounding pharmacy, T3/T4, Low Dose Naltrexone and progesterone cream. Don't know what I would have done without them. The physician who orders the meds for me comes to my chiropractors office twice a month. It may take some work to find a natural practitioner in your area, but it will be well worth it.

  12. @Kimbellgirl, you are fortunate you can sing. I love to sing in the choir, but singing, especially standing and singing burns me out FAST! I get lightheaded and have to sit or lay down and I usually end up with a migraine for the rest of the day:(. I'm still trying to recover from singing ar Easter services Sunday!

    Sing one for me please!

  13. Thank you SongCanary for your kind words. I am fortunate enough to have a practitioner of Health, Longevity and Renewal. They are very wise and have taught me much. I have found that even when I have a really good day and do normal things because I can keep going, I pay the price the next day because my body just doesn't recover like it should due to the adrenals.

  14. We went to the zoo too! Luckily they had benches scattered throughout the walking paths which helped immensely! We stopped for groceries on the way home, but I was way too far gone to walk through a store by that point, so I used a cart. It is amazing the looks I get, because I look fine.

    I normally have pre-syncope and start feeling worse and worse the longer I'm up. Walking isn't too much of a problem as long as I can rest when I'm done. What I can't do is stand. After shopping for a while, so I'm already worn out, by the time I get to the checkout it's hard to stand in line for 20 minutes. By the time I get out of there, I feel like I'm not even going to make it to the car let alone safe to drive home.

    I am going to get a "sit-cane" It's a cane I can hang on a shopping cart and it folds out to a tri-pod with a seat so I can sit anywhere. They only cost about $30 - $40.

    One other thing I'd like to share. I agree that excercise is helpful to build up your stamina and in some cases ease your symptoms. However, I also believe that Adrenal Burnout is the cause of some of our symptoms and if that's the case, then rest is the best thing. Pushing and pushing beyond your comfort level only sets you back. I know that if I push myself too hard, it will set me back and take 2-3 days to recover. The inability to recover is a sign of adrenals that aren't working well. We all have to listen closely to our bodies and do what is necessary to improve. I walked when I feel well, but if I don't feel well, I won't push it.

  15. I was working full time as a systems business analyst when POTS hit me on July 2, 2011. After that it got harder and harder to get through the day. by October I just couldn't go anymore, mainly because of the daily migraines caused by what I now know is Vertical Heterophoria. At that point I didn't have a clue about POTS, I just knew something was horribly wrong cause I could barely hold my head up or stand for any length of time. After Dx and starting some meds, I started back to work 1/2 days in January with the hope that I could build my way back up to full time. Two months later, I still can't seem to work a full day. If I do have a good day and work longer hours, I end up paying for it the next day.

    This weekend I picked up Strep throat, had a high fever, migraine, nausea, etc., so I feel like I'm starting all over building up my strength again!

    I don't know what to do about my work, I expend so much energy even working 1/2 days that I don't have anything left when I get home. I have long term disability at work, but I'm the main breadwinner in our house. It won't provide enough to pay the bills. I work for a great company and I'm going to enter a request to work from home full time. Perhaps without the commute I'll be able to manage. However, even when I'm at home, I've usually had enough by 1:00 and need to sleep for an hour.

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