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Member Since 23 Sep 2005
Offline Last Active Oct 29 2012 06:43 PM

Topics I've Started

How Can I Change The Title ?

06 January 2009 - 03:17 PM

I accidently hit the wrong key and submitted a post starting a new thread before I was finished with the title. <_< It's in the post recovery section ...

Can you change it to read "Is it possible to heal from celiac while eating gluten ? "

Or can you tell me how to change the title ... thanks ... marcia

Treating Oi/nmh Associated With Cfs/me/fm Or Cfids

14 June 2008 - 04:11 PM

I was diagnosed with CFS/ME/FM or CFIDS back in 1990 and have been GFCFSFEFCF + chemical free since July 2005. I've improved quite a bit (nuero symptoms are gone) but I'm still working on my energy / muscle fatigue.

I was recently re-diagnosed with OI/NMH (orthostatic intolerance). I was too sick to understand what this was before I had resolved most of my other problems. I noticed a huge improvement immediately when I started salt loading on May 1st, 2008. I could vacuum my LR/DR/K in 15 minutes without having to lie down and rest for an hour after 5 minutes of vacuuming.

Over the last month, I've played with the salt water recipe to see what worked the best. I started out with 1/4 tsp of sea salt in 16 oz of water, but recently changed to 1/4 tsp Redmond Sea salt + 1/4 tsp celtic salt + 1/4 tsp of No Salt (potasssium). I've noticed that I don't feel weak as often as long as I keep drinking this solution throughout the day. I'm still working on the PEM (Post exertional malaise) but it's not as bad as it was prior to salt loading.

I started swimming laps for 30 minutes a day last Thursday and so far so good. Knock on wood. Typically, I'd have been couch bound by Friday afternoon ... For those not familiar with PEM (post exertion malaise), a person will be exhausted after being active from 24 - 72 hours afterwards. John Hopkins ties PEM to OI ...

I did some research on sodium and found that it is necessary for our cells to function properly. As are the other electrolytes, but enough sodium is critical ...

Salt loading is the first step in treating orthostatic intolerance / NMH / POTS or low BP.

If you google CFS NMH you'll find some articles on this ... I copied this from an article I found by John Hopkins on how to treat NMH and POTS. The link is missing now, but it was at the Pediatricnetwork.org site. This is the first step they recommend before trying any meds ...

How are NMH and POTS treated?

Treatment of these conditions is often quite challenging. Because patients have a different mix of underlying contributors to their orthostatic intolerance, therapy has to be tailored to the individual, and usually requires persistence and a willingness to try multiple methods.

The approach we use has been based on the available evidence from formal studies and from our experiences treating large numbers of individuals. We use a stepped approach. Step 1 focuses on non-pharmacologic treatments, Step 2 involves use of a single medication, and Step 3 involves rational and judicious use of more than one medication.

Step 1:

a. Avoid prolonged sitting quiet standing, warm environments, and vasodilating medications.

Where practical, avoid circumstances that commonly bring on symptoms. For example, shop at non-peak hours to avoid long lines.

Take shorter showers and baths and aim for a cooler water temperature. Avoid saunas, hot tubs, and lying on a hot beach. Avoid standing still for prolonged periods in hot environments, and on very hot days.

Flex your leg muscles and shift your weight when you are standing still.

You may also want to avoid alcohol because it causes loss of fluids and often leads to dilation of the veins, which can "steal" blood away from the central circulation. Many with NMH are quite intolerant of alcohol.

High carbohydrate meals have been shown to reduce blood vessel constriction in response to upright stress, so a lower carbohydrate intake and frequent small meals may help.

Caffeine intake (including caffeine in soft drinks) affects some people with NMH or POTS positively and some in an adverse way, so examine whether caffeine is helping you or making symptoms worse.

An important aspect of treating NMH or POTS is to review your current medications and nutritional supplements with your doctor or health care provider to ensure that these do not have the potential to make your symptoms worse.

Narcotic medications (like codeine, morphine, oxycodone) and phenothiazine anti-emetics (like Phenergan or Compazine) can lead to more blood pooling, and niacin can cause vasodilation. Many patients develop hypotension when treated with high doses of nortriptyline, amitryptiline, or similar tricyclic antidepressants; low doses of these medications often are tolerated.

b. Use postural maneuvers and pressure garments.

Certain postures and physical maneuvers can help reduce NMH and POTS symptoms when people are upright, mainly by using contraction of the leg muscles to pump blood back to the heart and by compressing the abdomen to reduce the amount of blood that pools in the intestinal circulation.

These small changes may be important, as even a small increase in blood return to the heart can help maintain an adequate blood flow to the brain. Many patients have adopted these postures without knowing why. The helpful maneuvers include:

standing with one's legs crossed


standing with one leg on a chair

bending forward from the waist (such as leaning over a shopping cart)

sitting in the knee-chest position

sitting in a low chair

leaning forward with hands on the knees when sitting.

Some of these postures are less conspicuous than others. Sitting in a low chair (such as a camping stool) is helpful because it causes the legs to be brought up toward the abdomen, and probably reduces the amount of blood pooling in the intestinal circulation.

For similar reasons, avoid sitting in a high chair with the legs dangling freely, as there is no resistance to blood pooling unless the muscles are actively contracting.

One young woman found she could sit longer without symptoms if she put her feet on a low foot rest (this probably required more leg muscle contraction than regular sitting, and may have also compressed the abdomen better). Some patients get worse if they adopt these postures, so they may not be right for everyone.

Another technique has been shown to help reduce the frequency of fainting, and involves 2 minutes of maximum contraction of the arms (gripping one hand with the other and pushing the arms away) at the start of lightheadedness.

Another time-honored recommendation is to elevate the head of the bed slightly by 10-15o, so that the head is higher than the feet, a position that appears to help the body retain fluid at night rather than lose fluid into the urine.

Several research studies have shown that if blood vessels can be compressed from the outside (using tight compression garments or military anti-shock trousers), the abnormal heart rate and BP changes of NMH or POTS can be reduced or eliminated.

Waist-high support hose can prevent some of the excessive pooling of blood in the legs (knee-high support socks help somewhat), as can garments that increase abdominal compression (these work by preventing excessive amounts of blood pooling in the intestinal circulation), such as abdominal binders and abdominal corsets.

c. Treat contributing medical conditions

Attention to other medical conditions is crucial to ensuring that the NMH or POTS treatments are as effective as they can be. In particular, preventing activation of even mild asthma and allergies has been important in keeping our patients from developing a worsening of symptoms.

In patients with asthma, we usually try to reduce reliance on albuterol and other beta-agonist inhalers, as these medications can mimic the effect of too much epinephrine, and can aggravate NMH in particular.

Endometriosis and other painful conditions may aggravate symptoms, and ovarian vein varices in women with pelvic pain are associated with fatigue and worse orthostatic intolerance.

Sinusitis, anxiety disorders, depression, and infections of any sort are examples of other conditions that need appropriate medical attention when present.

Allergies or delayed hypersensitivities to food proteins (most commonly cow's milk protein) can co-exist with orthostatic intolerance, and unless they are addressed they can obscure any improvements that might otherwise come with medications and postural changes.

Dr. Kevin Kelly has identified the following symptoms that should prompt us to think further about the possibility of a food allergy or hypersensitivity: upper abdominal pain, gastroesophageal reflux, and appetite disturbance (filling up too quickly, picky appetite), sometimes with recurrent mouth ulcers, headaches, sinusitis, and either constipation or diarrhea.

If hypersensitivity to a food protein is playing a role, substantial improvements can result from strict exclusion of offending foods.

We would emphasize that this dietary treatment is not part of the standard treatment of NMH and POTS in our clinic, and is only considered on the basis of the specific symptoms mentioned above. Given the potential dangers of unsupervised diets, be sure to discuss these issues with your doctor or health care provider.

d. Increase salt and fluid intake

NMH and POTS are most often treated with a combination of increased salt and water intake. The increased salt and water help ensure that the blood vessels are filled better, and that the heart receives an adequate amount of blood even during upright posture. We recommend at least 2 liters of fluid per day.

Our patients who drink fluids regularly throughout the day seem to do better than those who don't take this task seriously. Keep in mind that prolonged periods of sleeping (more than 12 hours) may interfere with the ability to keep up with fluid needs. We recommend drinking fluids every 2 hours throughout the day. As a result, it is important to have easy access to fluids at work or at school.

For those who have been on a low salt intake we recommend an increase in the amount of salt they add to their food. The Appendix to this document contains a list of high salt foods. For some mildly affected individuals, an increased intake of salt and fluids may be all that is needed. Most of those with more severe symptoms require one of several medications in addition to the increased salt and fluid intake. The increased salt and fluid intake should be continued regardless of which of these medications is added.

e. Physical therapy and exercise

Exercise is important in regaining the effects that fitness brings in counteracting NMH or POTS. Because exercise can make NMH or POTS symptoms worse in the period before effective treatment has been found, it must be done carefully at first.

When you and your doctor feel you are ready, begin a regular regimen of exercise, finding something that does not make you lightheaded and doing it for brief periods at first, increasing gradually.

For example, one girl who had been ill for several years began functioning better once two of the NMH medications were working for her.

She began exercising on a treadmill, but this made her lightheaded, so she switched to a reclining exercise bike. Although she started with only 2 minutes a day, she increased this in small increments up to 30 minutes 3 times a week after about three months.

Walking, water jogging (the water acts as a compressing force to counteract blood pooling in the limbs), stretching, and Tai Chi or yoga may be gentle ways to ease back into exercise. Remember to warm up slowly before, and cool down gradually after exercise. If you plan to exercise outdoors, remember that extreme heat will worsen NMH or POTS.

A group of our physical therapist colleagues in Baltimore, led by Rick Violand, PT, have helped us to identify a relatively high frequency of postural asymmetries and areas of adverse mechanical tension in the nervous system as contributors to pain, lightheadedness, and fatigue in many of our patients with orthostatic intolerance.

These postural restrictions have helped explain why some patients were finding that exercise led to substantially worse symptoms.

Among those who have the worst of these postural restrictions, several weeks of gentle manual physical therapy often prepares them to tolerate the mild aerobic exercise that would have caused a flare-up beforehand.

We think careful attention must be paid to postural asymmetries and restrictions in mobility during the physical examination, and the diagnostic expertise of a physical therapist may be essential to identifying problems.

Manual techniques that our colleagues employ include gentle neural mobilization (or neural tension work), myofascial release, and cranio-sacral therapy.

I just wanted to mention too that pelvic pain can be from vulvodynia which can be treated by lowering a person's oxalates via the low oxalate diet.

Has anyone here tried this ?
Thanks .. marcia

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