For people suffering from Orthostatic Intolerance, Postural Orthostatic Tachycardia, Mast Cell Activtation or EDS. Follow me as I document my struggle towards better health.

To Use or Not to Use Medications to treat Postural Orthostatic Tachycardia and OI

One Patient's Perspective...
Which treatment, if any, a patient chooses in managing their POTS or OI is a deeply personal one.  Only you know how you feel and what makes you feel better.  My choice, as a POTS and OI patient is to avoid medical interventions.  I realize this is not everyone's choice and I realize some people do not agree with my position.  That said I offer no apologies.

Why I believe Dr. Levine is on the Right Track
Postural Orthostatic Tachycardia is not a well understood condition.  Although centers like Vanderbilt have done terrific work in their investigations there are still many unanswered questions about what causes orthostatic intolerance in patients.  In fact on the Vanderbilt website they say directly "the etiology [cause] of OI is unknown"  they also say that they believe the cause is "heterogeneous" [multiple possibilities].

Perhaps it is my background in the technology industry which makes me think of the human body as a large and complex software program.  What I know about large and complex software programs is if you try to fix a software "bug" without hunting down the source of the bug you may create additional and unexpected issues.  You can try to build "workarounds" if the bug is untreatable or can't be found but workarounds may lead to more problems.  In my mind, medications for OI are like workarounds.

Unlike most software programs, the human body is highly adaptive.  If our bodies have a defect, we can help our bodies adapt and compensate and sometimes the body can adapt without our direct intervention.  There was a study out of the University of Montreal in the late 90's that found blind people to have better navigational skills than sighted people. Orthostatic Intolerance which can be invoked through environmental conditions such as weightlessness seems to me to be a condition that the human body can learn to adapt to.

Dr. B. Levine has found a formula for helping our own bodies compensate for Orthostatic Intolerance and researchers seem to agree that orthostatic conditioning is emerging as one of the most important treatments for the symptoms OI.

If we can help our body's natural adaptive capacity to compensate for the condition of Orthostatic Intolerance we may not remove the cause of the OI but we can live better with it.  If we try to use "workaround" fixes in the form of medical interventions, it may interfere with the body's natural adaptive capability and cause additional problems.

So in my mind I am going to help my body adapt to OI as much as I can through orthostatic conditioning, nutritious foods and increased sodium and fluids.  If after I been on a regime long enough to maximize the benefits of my body's adaptive capabilities I still experience unpleasant symptoms I may then seek medical intervention.

That is my take on POTS, OI and medical interventions.  Orthostatic conditioning is not a quick fix and it does require dedication, tenacity and commitment but in my mind, it is a more reliable "fix" until such time as scientists figure out what causes the condition.

7 comments:

  1. I think you are right we all have to find our own path with this and I love that you've found what works for you. For me I do the holistic approach (which was how I used to practice neuropsych). I do the meds, the exercise, the diet, the yoga, I find my own 'pleasant events' in the form of painting and writing, I hang out in my garden and with my dogs and family. It works for me (well works is probably the wrong word) but I know it doesn't work for everyone. I think state of mind has a lot to do with how well any program works if you can get to that right place it can help so much. I'm really interested to hear how you go with the program and have my fingers crossed that you have the best outcome.

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  2. The program you talk about is very interesting, but what about the poeple with POTS and severe ME who cannot do conditioning exercises? There is a high incidence of POTS in people with ME, myself included; does Dr Levine recognise this?

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  3. ME is what you call CFIDS in the US by the way...

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  4. Good point ashy00: I think it is interesting that OI/POTS is frequently seen in patients with Chronic Fatigue (ME) and Fibromyalgia. (some studies say 40+% overlap) I can't say I have read any comments from Dr. Levine recognizing this but it does seem to be well a well understood statistic.

    I've often wondered if chronic low blood volume wasn't the culprit behind the pain,inflammation, migraine, visual disturbances and nerve storms in all of those conditions. I think there has been a link established between symptoms of IBS and low blood volume for example.

    ..and why can't someone with ME or Fibromyalgia do orthostatic conditioning exercises?

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  5. Yes i think that low blood volume may be a factor in those symptoms - my headaches and eye problems have improved with Midodrine. I could do with a bit more improvement than i have got though, so far.

    People with ME/FM can do some orthostatic conditioning exercises but it depends on severity of illness i would say and what those exercises are. I took part in a study where i had to stand every day for as long as i could (up to 40 mins) over a period of months. I managed only 3 or 4 minutes on average and it did not get better over time. i think i was just too unwell to do it properly or benefit. Also using my muscles for anything repetitive or trying to improve tone/strength in them is a non-starter.

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  6. I think it really depends on the type of POTS you have and the mechanism which is causing the heart rate to increase so dramatically. As you've said they don't even know all of the causes. I think the low blood volume/hypovolemia/blood pooling type of POTS is the most common, so drinking more fluids, increasing salt intake/elevating your bed will likely help a large percentage of POTS patients. Unfortunately I did all of those without any long term decrease in symptoms. In addition, I've taken the blood volume increasing medicines and they've done very little for my POTS. I have been on DDAVP as well as florinef and hydrocortisone for adrenal insufficiency. My tilt-table test was done while on all of those meds AND with a saline IV. My BP went up while on the tilt-table rather than falling like most do.

    I opted *out of sheer frustration* to take a low dose beta-blocker, which is a lot more innocent than the SSRI's and other anti-depressants they love to push on us. Honestly, it has been the best decision I've made thus far as I can actually DO something during the day. I'd say I am about 90% better.

    I certainly haven't stopped searching WHY I have POTS, which started nearly 9 years ago now! I just want to get better and move on with my life. I'm kind of done with the "let's try this natural route". I've missed out on most of my youthful years due to this stupid problem. This doesn't mean I'm not researching though because I do every day. I am very much PRO natural treatments, I just haven't had any luck with them personally. :-(

    I really hope you get the relief you are looking for with these exercises and I will be checking back to see how you are doing on the program. I'm still looking into potential mineral deficiencies or methylation blocks as the cause of my POTS.

    --Dana

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  7. How are you doing Elisabeth? You haven't posted an update in a while.

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