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

Reply to "S" - How to feel better with POTS

Here is a reply to a message I received from a fellow patient of POTS and OI.  I thought I would repost here in case it is of help to anyone else:

Dear "S" - I am so glad you are reaching out. For me when I am feeling really crappy it helps to know there are others that have been there and done that! I will try to answer your questions one at a time based on what I have learned over the years and what I have experienced. Remember I am not a doctor!!!

Building blood volume: This seems to be THE most important aspect of reducing symptoms. Drinking 3-4 litres of water daily and LOTSA salt with food is key.

I can lose track of how much water I am drinking so I fill up a large jug which I know contains 1.5 litres and when it's empty I know to fill it and drink it all again for a total of 3 litres.

I am perplexed by your doctor suggesting that you sleep with your feet elevated as this is what research teams do to patients in order to provoke orthostatic intolerance in patients for weightlessness simulation experiments (see the articles in my Spaceman's post). I am sticking with elevating the head of my body.

The purpose of exercise is to gradually recondition your cardiovascular system. You've probably heard about athletes who must train their bodies to compete in places where there is higher elevation - similar situation for us OI sufferers. We must train our bodies to function while standing. Read my post on Exercise.
Figure out using the heart rate zone calculator what your zones are. Then do the exercises as per my page suggests. Start slowly and try not to miss a day.

When I was bedridden I did situps, arm weight lifting, leg lifts. After a while I could do so many situps that it became aerobic!



As for medications: Dr. Levine's program requires you to be off any medications. Since I have been diagnosed with POTS and OI only, no other conditions, then my personal choice is go off the medicines. There is very little evidence I can find to suggest that there are benefits for me in taking any meds. I have done short courses of florinef (2 months) and then weaned myself off it. I have never done Midodrine. Beta blockers have been found to make some people worse.

There is strong evidence now that proves lotsa salt and fluids and exercise (as described regime) does work to alleviate symptoms. That is the course I choose to take because after reviewing every medical article I could find it appears to be the fastest, most effective path to feeling better.

That said, going on an exercise regime will make you feel really exhausted for the first couple of months. The fatigue is brutal but you should start seeing a slight improvement in your OI symptoms after a couple of weeks.

Diet - I read one article by a DOCTOR who suggested that someone with POTS or OI should be eating salty foods like chips and fast food hamburgers. Oh yeah - just when your body is trying to help you feel better you stuff in some low nutrient foods. I choose to make my meals extra nutritious because I think my body needs all the help it can get right now to be healthy.

If you had stomach flu then you would probably lose a lot of fluids. Boosting your immune system through healthy eating is also a great way to help your body get better because you less susceptible to getting colds, flus and gastric problems.

Final Advice:

*Read the exercise page -know your HR zones, do exercises sitting down - no walks even
*plan your exercises and put them in a calendar
*plan your meals with the salt amounts calculated (see my sample lotsa salt diet post)
*put your meal plan in your calendar too and write down what you eat daily
* take vitamin supplements such as Greens Plus, good multi-vitamin, B2 200mg twice daily if you get migraines and Omega3 etc
* rest when you're tired and don't over do it

Writing things down in a calendar helps keep you organized when your brain isn't working.

I hope I answered your questions. These conditions are so life altering I want to make sure I am doing EVERYTHING I can to be somewhat normal. I really hopes this helps and remember...you are not alone!

2 comments:

  1. I would love to learn more about what specific exercises you do each day. I can understand strength training sitting down...I'm used to that. But cardio sitting down sounds hard. I'm so used to walking or stairs or elliptical or low-impact aerobics. It's incredibly exhausting. My heart rate spikes very frequently. But I figured that's cardio for us. Especially walks. They don't make me feel good. They still make me feel sick, but if I'm feeling up to it, I feel proud if I can make it around the block or up and down 10 flights of stairs. I'd be so very interested to know your exercise routine. What types of exercises you do for cardio. What are your usual strength exercises, etc. Unfortunately, I'm not currently a member of a gym, so I am quite limited. But I can make the most of what I've got. Thanks again for your help. And congratulations on your halfway mark!

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  2. Hi Carolyn - I think the theory behind Dr. Levine's treatment protocol is gradually increase the performance of your body to an upright position. If you start exercising upright or standing up, you are overtaxing your system. That is why you start your training sitting down! Aerobic activities such as recumbent cycle, swimming and rowing are all excellent. Walking, climbing, running should be not be performed until after a couple of months of sitting exercises.

    Strength training exercises that I do include:
    * leg press (can be done with resistance bands)
    * leg raises and curls
    * abductor/inductor
    * chest pull
    * chest press
    * quads
    * bicep curls
    * tricep dips
    * lat pull-down
    * chest raises for lower back
    * crunches for abs
    * side crunches
    * the plank
    I do 2 sets of 15 reps of each

    Many of these exercises can be done with free weights and resistance bands at home. Hope this helps!!

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