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Posts posted by Enid

  1. 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 :)

  2. 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 ! :)

  3. 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!

  4. 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?

  5. 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!

  6. 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?

  7. 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.

  8. My very patient and never dismissive :) GP after numerous referrals to ENT, neuro, cardio etc..decided to test me for my adrenaline levels when no one could explain my tachycardia and other symptoms- and when my levels came back sky high she referred me to an endocrinologist as she thought I had a pheochromocytoma. The endo did not think that was the case as I did not have the high BP and because my symptoms came and went. He was the first one to say "this sounds like something called POTS. My colleague Dr Schondorf spoke about this recently" then..my internet searches began and I could not believe how everything matched. Long story short, Dx confimed by tilt table test and Qsart and here I is .... Did have my share of not necessarily dismissive but just not conscientious MDs. I remember one cardiologist asking me if I was sedentary - I explained I wasn't as active as I used to be but, and no joke, this is exactly what I said, "but shouldn't I be able to stand up without my heart rate getting so high?" He put me on monocor and sent me on my way. I keep thinking I should send him a note in the spirit of increasing awareness.

  9. I had a serious concussion at the age of ~ 9 or 10. Playing on monkey bars with mittens with rock hard frozen sand underneath - fell from about 10 feet, unconscious for long enough for my playmate to panic, run home and get her father... overnight in hospital...etc....I have often wondered if there could have been a link - I don't think it is the only factor, but if I have a genetic predisposition, perhaps this was one of many multifactorial triggers.

    Sounds like incidence of concussion among us would be an interesting poll - anyone?

  10. Had a neuro follow up appointment this afternoon - my tachycardia and palpitations have been much better since starting a low dose of nadalol about 5 months ago, but I shared that I was having nearly daily headaches that are impacting work and life in general.

    Doc suggested I could either try high dose riboflavin (400 mg per day) or amitryptiline - I went with the riboflavin. Found this: http://www.ncbi.nlm.nih.gov/pubmed/15257686, but wondering if anyone else had had good results.

    Doctor said side effects are neon yellow urine, but given all the wonky thing that POTS brings on, glow in the dark pee seems almost fitting!

  11. What an interesting thought! It could evolve into a sort of dysautonomia Olympics :) The 10 yard dash surrounded by men wearing "axe body spray", (this makes the floor go up and down for me!), a 2 minute stand and sway with the noise of a vitamix going (makes my scalp tingle and dizziness follows), walking a simple obstacle course in a dimly lit room with the "action" movie Ice Age in the background (a true recent experience at my daughter's school movie night - the movie coupled with the kids playing with flash lights almost paralyzed me! I had such a difficult time planning and taking each step. It was as if my system turns itself down to tune out all the over stimulation!)

    Wishing you all a relatively easy day ...

  12. All the houses would have 2nd floor bedrooms with the floor having a built in tilt of ~ 10 -15 degrees so that you would not have to deal with blocks under the head of the bed...

    Showers and baths with built in seats.....Nuun would set up a competition bar across town from the gatorade folks...

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