Memory loss and Ehlers Danlos Syndrome

Although “memory loss” isn’t one of the common Ehlers-Danlos syndrome (EDS) symptoms, many patients experience this type of cognitive impairment, which can impair their ability to concentrate, learn, retain information, and keep a job.

Memory loss is a cognitive impairment that causes problems with verbal recall, basic arithmetic, short-term memory, and focus. All of these mental functions may affect one’s quality of life.

Memory loss can come on suddenly, obstructing your ability to think clearly for hours or even days. Many who suffer from it often complain of being unable to complete daily tasks, coordinate their thoughts, or keep a conversation. Some people struggle with language and word usage, and their speech can be sluggish and jumbled.

Although the cognitive disorder is not related to a loss of intelligence, it can be perplexing for those who experience it, affecting their self-esteem and trust.

What are the causes of memory loss?

According to some researchers, memory loss in hEDS is caused by the reduced blood supply to the brain due to blood pooling in the lower extremities due to stretchy veins.

What is the best way to do it?

Balance exercise with rest if you’re experiencing memory loss to prevent being overwhelmed. Find a comfortable baseline of mental activity and break it into tiny, manageable chunks to help you pace yourself. Alternate these with periods of rest or relaxation. Stop any cognitively taxing task until you hit mental exhaustion. Do not exceed the boundaries you’ve defined for yourself.

Keep a list of important items you need to do each day if you have short-term memory loss. Often, instead of multitasking, make sure you return things like keys or drugs to their assigned positions and concentrate on one thing at a time.

Ascertain that you have adequate social and medical care. If you’re having trouble dealing with memory loss, talk to your doctor about possible solutions. Furthermore, telling family, friends, and colleagues about your problems and how they can support you can be beneficial.

Loss of memory in EDS

Memory loss is common among people with EDS/hEDS. They can become perplexed, unable to process details or forget items seemingly at random. Although the exact cause of EDS/hEDS is unclear, it is thought to be caused by the same factors that cause fatigue. As a consequence, coping with fatigue will help with memory loss.

Memory loss in EDS/hEDS is believed to be linked to a lack of blood supply to the brain caused by blood pooling in the legs due to stretchy veins. More study is needed to confirm this suspicion. Memory loss tends to be more common in people who have PoTS due to their EDS/hEDS, implying that there is a connection.

Various other factors can contribute to or exacerbate memory loss, and making minor lifestyle improvements can help. Hormones play a role in memory loss and exhaustion. Memory loss affects many women at different stages of the menstrual cycle and during pregnancy. Women’s symptoms can worsen whether they’re on birth control or hormone drugs.

Vitamin and mineral shortages may induce or exacerbate fatigue and memory loss. It’s essential to eat a healthy, well-balanced diet, and if your symptoms are serious, your doctor can prescribe a blood test to see if you’re deficient in any vitamins or minerals. Among them are anemia (iron deficiency), vitamin B and vitamin D deficiency, and potassium deficiency. Supplements can help alleviate symptoms if you have a deficiency. However, before taking any medications or supplements, particularly if you are on prescription medication, you should always contact your doctor.

Some drugs can cause you to become exhausted and forgetful. Among them are antihistamines, cough medications, pain relievers, and antidepressants. If you’re worried that these are causing you problems, talk to a doctor. Your medical doctor may be able to switch your prescription to one that doesn’t cause the side effects. A variety of factors can cause fatigue and memory loss. Diabetes, hypothyroidism, heart disease, alcohol and drug abuse, emphysema, and obesity are just a few of them. The effects of these conditions can be removed by successfully managing them.

In EDS, how do you deal with memory loss?

There are some of the necessary steps you must take to deal with EDS memory loss.

1.     Keep yourself hydrated.

When attempting to combat exhaustion, staying hydrated is critical because it aids in the proper blood flow to the brain. If you have a sister disorder like postural tachycardia syndrome (PoTS) or orthostatic intolerance, this is particularly important because these disorders can also limit blood flow to your brain. Electrolyte-rich beverages, such as coconut water or sugar-free sports drinks, can help you stay hydrated in addition to water. Urine should be a light yellow color.

2.     Maintain a balanced diet.

Anemia (iron/haemoglobin deficiency), vitamin B12 deficiency, and vitamin D deficiency are only a few of the deficiencies that can cause fatigue. Low vitamin D levels are more of a concern in the winter because you get less sun exposure, which helps your body develop vitamin D. A regular, well-balanced diet will help you feel more energized and avoid deficiencies. Taking a multivitamin supplement can also be beneficial. Suppose you have stomach problems that cause malabsorption or are taking medicine that prevents nutrients from being absorbed (e.g. proton pump inhibitors, gabapentin, pregalabin). In that case, you should ask your doctor to evaluate your nutrient levels. Your doctor can prescribe a higher-dose vitamin if you have a serious deficiency. Although the evidence is anecdotal, some people find that the supplements carnitine, co-enzyme Q10, and 5-HTP help them fight fatigue. Always consult your doctor before taking supplements, particularly if you are taking other medications.

3.     Caffeine and fructose should be avoided.

Caffeine and sugar can make you feel less tired in the short term, but they may exacerbate fatigue over time. To reduce energy fluctuations and make you feel more stable and less tired, sugar and caffeine intake should be decreased or removed.

4.     Workout/Exercise

Exercise can help you feel more energized, even though you don’t feel like it. It stimulates the body to generate adrenaline and other hormones that can make you feel more energized. Start slowly and steadily increase the amount of exercise you can do, as it is important to prevent overexertion at first. For those with EDS/hEDS, swimming, cycling, and specialist physiotherapy are all beneficial types of exercise.

5.     Take it slowly.

Make sure you don’t overwork yourself and get enough rest in between tasks, or you’ll pay the price the next day.

6.     Sleep hygiene is essential.

Many people with EDS/hEDS struggle to get a full night’s sleep. There are many things you can do to change things on your own. The importance of good sleep hygiene cannot be overstated. This entails establishing a good nighttime routine. Every night, go to bed at the same time (shift work can exacerbate problems) and don’t use a monitor or phone for several hours before bed (bright light from screens prevents the production of the hormone, known as melatonin, that helps you sleep; the light from a TV shouldn’t affect it as much because you’re sitting further away, but cutting out TV for several hours before bed – help as well). Keeping your phone/computer away from your bed will also help you prevent disruptions (“log off before you nod off”) and ensure that the room is free of other distractions.

7.     Control Pain

One of the causes that can cause sleep disturbances (‘insomnia) is pain. The pain must be kept under control. Heat pads applied to sore joints before bedtime will help. If you feel that pain is one of the key reasons you cannot get a good night’s sleep, you can speak with your doctor about pain management. It may be necessary to obtain a pain reliever that operates continuously during the night. Sleeping pills are often prescribed, but they’re not a reliable long-term remedy since the body can become immune to their effects. Oversleeping can also exacerbate exhaustion. Sleeping for the same amount of time each night will make you feel less exhausted and establish a good routine. Most people need about seven to eight hours of sleep, but people with EDS/hEDS or chronic fatigue may need more.

If none of these things help you sleep, it may be worth getting a referral to a sleep clinic, where they can diagnose you and try to figure out what’s causing your sleep issues. Several other sleep-related issues could be more prevalent in EDS/hEDS patients

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