Get Enough Fluids

1. Get at least 2 liters. Shoot for 3-4 liters of fluid a day.
2. Drink something about every 2 hours throughout the day.
3. To find out more about fluids, go to "Fluids".

    More Salt

1. Start with 3 to 4 grams a day. [The normal recommendation is one teaspoon of salt - 2.3 grams (gms)]
2. Specialists recommend 6 gm up to 10-20 grams of salt a day.
3. You can add more salt to your food & eat salty foods like pretzels, pickles, potato chips, but it's hard to get 3-4 grams a day this way. After awhile, your tongue and stomach will get irritated.
4. The easiest way is to take salt tablets.
5. To get more information about salt, how to increase salt, the research about it, a list of the salt in different foods, whether it's safe and more information about salt, go to Salt - Your New Friend.

If this is not enough - there are medications to add.

Raise the Head of the Bed - It is recommended that the head of the bed be up on blocks - about 4 inch blocks. This puts your head higher than the rest of your body and retrains your baroreceptor cells in the neck.

For more information, go to Taking Care.

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Common Triggers-Things to Avoid - "Orthostatic Stressors" are what doctors call the things that bring on symptoms that come with standing or that make them worse. You probably already know some things that make you you dizzy or lightheaded, give you a pain on the top of your head or the back of your neck/neck or just make you feel bad. For more details about drugs and herbs to watch out for, go to Caution-Drugs & Herbs. Here is a short list, there is much more information at Common Triggers:

1. Warm water for showers or swimming, warm weather, crowds, hot tubs and sunbathing.
2. Humidity doesn't help especially on hot day. You may need to visit a public place with air conditioning.
3. Getting up too fast from lying down or sitting-for people who get dizzy right away - within a minute.
   • If you don't usually get dizzy until you've been standing for 2-3 minutes, you need to be careful for a few minutes after getting up.
   • For people with POTS, it may take a full 5 to 10 minutes to get all your symptoms.
4. Eating big meals and then doing things like exercise or walking afterwards.
   • Eat smaller meals-break it up into 3 small ones & 2 snacks.
   • Wait about 1 hour after eating to do activity, especially walking around a lot.
5. Standing still for too long. Check out 'Tricks To Avoid Getting Dizzy' below or in the Everyday Basics section.

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The Water Trick - If your BP is low or you're feeling low BP symptoms, or you know you will be doing something that would be an "orthostatic stressor". Chug water - that means drink 16 oz (1 bottle or 2 cups) in 10 to 15 minutes. Wait about 30 minutes. It will help bring the BP up. It lasts about 2 hours. Learn more about "The Water Trick".

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Garments That Help - If you know you will be standing up a lot, put on an abdominal binder or corset or tight stretch shorts. You can add knee-high compression stockings if you want. For more about compression clothes, go to "Compression Garments" They do help and there are more choices than "granny-type" support stockings.

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Tricks to Avoid Getting Dizzy

1. Standing up - Don't stand still - you probably already know that. Move - it moves the blood up from your legs: Wiggle, cross your legs, put one leg/foot up on a chair or ledge. Raise up and stand on your toes for 30 seconds, then stand on your feet, then stand on your toes, then stand flat. Do that a few times.Make a fist of your hands, pump your arms up and down. SIt down if you can or squat if it keeps getting worse.
2. Sitting down - lean forward - put your elbows on your knees and your chin in your hands.
3. Lying down - bring your knees up to your chest, hug your knees.
4. Feeling faint? Can't lie down now? Then squat down. If you can find one, sit on a low chair like a camp chair or a kids small chair.

For more ideas about what will help and why they work, go to "Tricks To Avoid Getting Dizzy".

Part of the problem with OI (POTS and NHM) is the changes that have occurred in the heart and blood pressure/pulse system. Recovery requires retraining the heart & the cardiovascular system so that "normal" is standing up. There are 2 parts to this retraining: 1) increasing the blood volume with fluids and salt and 2) movement^1-6.

Because many who have POTS, NMH, CFS and related conditions have had prolonged periods of bedrest, this has increased the amount of muscle deconditioning. (See Prolonged Bedrest and Prolonged Bedrest & OI for more details about what happens to the muscles). The muscle deconditioning causes weakness and loss of endurance in all your muscle groups - the calves, the thighs (used for walking, stairs and getting into and out of chairs), the abdominal and back muscles [used for sitting and standing upright (posture)], and the arms. This makes it easy to become tired doing ordinary daily activities.

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Orthostatic intolerance creates an intolerance to exercise. But, most exercise programs for CFS, POTS, and NMH have had people doing exercises standing up - walking, using treadmills, or jogging. This doesn't make sense because just standing up causes orthostatic symptoms. Doing the exercises standing up puts even more stress on the system. It makes for more exercise intolerance & fatigue.

 

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Reconditioning the body needs to be done with specific exercises that don't create orthostatic stress, starting out in the lying/sitting position. Training to increase strength and endurance for the muscles of the legs and abdomen are recommended. ^{1, 10} Find out more in Recovery From OI and Move Into Health.

Orthostatic intolerance especially when other conditions like CFS and fibromyalgia are present, is a perfect example of "conscious living" or "mindfulness". You become aware of every activity, no matter how simple. The truth is, most people will not understand what energy activities take, unless you tell them.

Setting priorities: Instead of going through the day doing things and then getting to the end of the day needing a rest but you have lots left to do. It's time to make decisions at the start of the day about what is important to do today, what you need to do yourself, what others can help you do, and what can wait until another day.

The "no pain, no gain" approach to life: In the western culture, most of us have learned to ignore or not notice messages from our body and our emotions. We have learned to use our mind, our thinking, to direct our lives. Especially for Type A people, this means coming up with an idea, developing a plan and forging ahead. It is what some call the 'left-brain' approach to life. The theme is "no pain, no gain" or "mind over matter". or ignore the pain or messages from your body and keep going, the mind knows best. For some people and some things, this works. It can bring success in school, sports and work. In fact, many of the people who develop POTS and CFS have lived their lives from this perspective.

Changes that come with OI: However, this approach generally does not work very well when it comes to dealing with an illness or medical condition. Adjusting to an illness requires a new approach - learning to notice messages from the mind, emotions and body, interpret what they mean, and take appropriate action. It means respecting what they are trying to tell you and using it to guide how your respond.

When they first develop OI symptoms from POTS, NMH or CFS, most people have used the "no pain, no gain" approach to exercising. This has resulted in a double whammy - putting stress on the body doing exercising standing up plus ignoring messages that it is tired and needs to stop. The result has been more fatigue and exhaustion. And frustration, anger and a feeling that it's all hopeless, nothing works!

What makes a difference in recovery:  In the clinical studies, 2 things that made a difference in a person's recovery - how willing they were to make changes in how they lived and what they did and 2) how well they managed their orthostatic intolerance. ⁹

New Approach- Balance:   Recovering and healing from OI requires a new perspective.

• Recognize your symptoms for orthostatic intolerance due to low blood flow . This is not something to "tough out" or "push through". When you stand up and get symptoms, your body is telling you that your brain is not getting enough blood. You need to pay attention to that message. You need to do some things that will get more blood to your head and brain.
  
  • If you are doing things and start to get your warning signs, it's time to find a way to get more blood to your brain. This is not the time to "tough it out".
  
  
  • For example, you will need to learn to tell the difference (or you already have) between a migraine headache and the pain in the back of your head or top of your head that comes when you stand too long or you stand up and your fluids are low.
  
  
• Pace yourself - See the 'Activities' tab or go to "Deal and Heal" for more details.


• Feel and Deal with Fear, Hopelessness, Isolation, & Anger & other feelings and thoughts that come with OI.
  • It's important to realize that many of these feelings are linked to the chemical response to standing up and to the autonomic system changes. There are things you can do to bring the chemicals under better control and adjust how you react to them.
  
  
  • Some are normal reactions that anyone gets when they get a new health condition that will be with them for a long time. The emotions and thoughts still have to be dealt with.

For more details, go to "Deal and Heal"

There are other medical conditions that are common in general. Some are more common in people with POTS, NMH and CFS.

• They can trigger more orthostatic symptoms. For example, allergies cause the body to release histamine. As a chemical, histamine opens the blood vessels and makes pooling more a problem.


• They can also affect how severe symptoms are or how hard or easy the symptoms are to control.For example, nerve pain can interfere with a retraining routine.


• They can result in more bedrest. For example, a severe migraine.

There is more information about these conditions in "Associated Conditions".