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    Montreal, Canada

Enid's Achievements


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  1. Hi to all - I wanted to share this link - POTS made the national news in Canada on CTV April 20! http://www.ctvnews.ca/video?playlistId=1.1784423
  2. Nope - meds are a part of my reality that help me function and enjoy a much better quality of life. I am on iron, b2 and vitamin D and a small dose (10 mg a day) of nadalol. I had a priblem getting nadalol recently (no longer distributed as a 40 mg pill in my province) so I had to switch to proanolol 10 mg in am and 10 mg at dinner. I had been feeling pretty good and functioning well (working full time, not much palpitations or head aches, fatigue under control) so had this thought that "maybe I don't need the nadalol anymore" anyways, during my brief time on propanalol, starting to notice old symptoms creeping back. Fatigue, that feeling of shaking inside, nighttime tachycardia, tachy after lunch, headcahes, visual vertigo . luckily I was able to score some 40 mg nadalol from neighbouring province (1hour drive), I am feeling back on track and this episode made me view my meds in a positive manner - in that they allow me to function and enjoy life much more with less symptoms. my 2 cents -or 10 mg
  3. At my last appointment with my neurologist - (basically to renew my nadalol prescription and touch base) he asked me if there is anything else I wanted to discuss. I said "has there been any magic pills or treatments discovered in the last 6 months that you would like to share" to which he said not that he knows of, but that he is going to a conference in Hawaii in October and will get back to me ... I didn't realize it was a conference only on the ANS! What an interesting program! He mentioned that there will be ++ representation from the Japanese medical community.....and maybe there would be something interesting. So everyone keep their fingers crossed! (as an aside, I feel very fortunate to be followed by someone with such autonomic expertise) p.s. I agree it would be nice if some of the info was made public..in particular what exactly goes on at morning tea !
  4. Nope - some symptoms persist at times even after sitting or lying down. Ex: headaches, tachy can persist, head feeling full and generalized "wonky" feeling
  5. What is the issue with nutmeg?
  6. my neurologist suggested I take 400 mg of vit B2 daily which seems to have helped somewhat with no real side effects other than day glo yellow urine. It took about 4 weeks before I noticed an improvement. I take 200 mg in the morning and 200 mg around dinner.
  7. Surge - yes, anxiety - no. Once, I was having a bad episode (had discontinued my iron pills + had been standing during break of a conference...) Had to go run errands during lunch break and while driving had tachy ++, could not catch my breath and felt like my whole body was jittery. MY GP's office was in the mall where I was and I had to find a place to lie down so I ducked into her office to lie down on her exam table.... While trying to stop the surge and get my heart rate down, I asked her, calmly, "is this a panic attack" She replied...if you are asking me that question in such a rationale way, this is not anxiety. I also used to often get symptoms in the morning after driving to work, I would walk from the parking lot then stand to wait for the elevator. While standing still, my HR would go up, and again with the feeling like my insides were shaking. I remember (pre diagnosis of POTS) explaining to my colleagues, again, in this rationale way trying to explain the weird sensations I was having " maybe this is a work burnout - I like my job, look forward to coming here but everyday at the elevator it's like my body does not want to go up" LOL - once I got the tilt table test and Dx, it all made sense!
  8. Do not know my actual levels but my GP found my ferritin to be low prior to being diagnosed with POTS (when she was still trying to help direct me to specialists and tests etc..) Have since been on iron, only every 2nd day as my iron level themselves were ok, just my iron stores were low. Interestingly enough, at one point after being diagnosed with POTS, she suggested I try to stop taking the iron, and I ended up having a very bad episode of tachycardia and autonomic surge where you feel like your HR will never come down....and a couple of weeks of overall worsening of symptoms...I never knew that low ferritin was common in us POTsies otherwise I never would have agreed to try stopping the iron. Can anyone explain the link?
  9. Hi Clairc et al - I have found that the Vicks menthol smell does not bother me - so sometimes, once I realize there is any smell in my vicinity that I will be unable to avoid for the next while, I quickly put a bit vicks vapo rub under my nostrils which seems to "ward off" the other smell. Breathing though my mouth also helps (I would not say I have an allergy though but rather a sensitivity - certain smells trigger my dizziness, headache and overall wonky feeling - so not sure this work for someone who has a full blown allergy) But it may be worth trying ...good luck!
  10. I have 2 - 3 tablets per day - I go to bed with the orange citrus flavour at my bedside and drink ~ 8 oz before I get out of bed. Then I prefer the lemon lime during the day. I often mix with soda water.
  11. Batik... Also, I find it extremely difficult to stay tuned in to a conversation I am having with an individual when there are other conversations within earshot (eg a lunch table) I have to actually mentally tell myself "keep listening keep listening" but it is as if the speaker I am trying to tune into has "faded" and all I can hear is the other conversation, even if it is less interesting! I physically cover my right ear, turn my left ear towards the speaker I am trying to focus on and find this helps. Is that typical for you?
  12. Batik - Very interesting! I have often noticed that talking on the phone is a trigger for dizziness but I thought it may be related to my neck position. How were you diagnosed with an Auditory Processing Disorder?
  13. I often put cotton in my right ear - dampening noise or even blocking a cold wind draft seems to help with symptoms. I also often cover my right ear and find that I preferentially rotate my neck to "listen" with my left ear only when I have to pay attention to something. especially if there is a lot going on in a room (not necessarily noise but "action") although my hearing has been tested and is fine in both ears. Before getting diagnosed with POTS I was worked up by ENT who thought I was having vestibular migraines and I have visual vertigo. My brain relies more heavily on visual input than inner ear - so, for example, when windows open and close on a computer screen, I have the sensation that I am actually moving. My vestibular input does not counter the conflicting images from my eyes. The ENT explained the visual vertigo by your brain stops relying on vestibular because for some reason is does not think it is reliable. You know that feeling most people get when 2 trains are side by side and the other starts moving and you are not sure if you are going backwards....I have that sense in varying degrees all the time. SO..the way I look at it now is that I have both vestibular and autonomic dysfunction.
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