lloppyllama

I am glad to hear that it went relatively smoothly! I hope she heals up well, and that she is back to her "normal" self in a reasonable amount of time. Thanks for letting us know, and keep us updated if anything changes.

Good luck,

Mary

For me hormones do seem to affect it a lot. My cycles are very unregulated...sometimes they are 20 days apart other times they are 40....so its very hard to judge when I will get my period. Generally I feel the worst about 2 weeks before my period up until I have had my period for about 2 days. I think this has to do with which hormones are stronger at the time, and how they change throughout the "month".

It is normal to feel much worse before or when you have your period for POTS patients, however since you did just change BC it could have something to do with that.

Best of luck,

Mary

It is very common for POTS patients to feel as though they are having an anxiety attack, without actually having the normal symptoms other than the chest discomfort. It is the tight feeling you may be experiencing, but according to my doctor at Mayo, it is very normal.

I get chest pains quite frequently, and the position I am in doesn't matter. It happens laying down, sitting, and standing. So chest pains are a very normal part of my daily life. Mine will generally be more of a stabbing pain near the left side of my heart.

Hope you get some more relief soon, or feel more comforted knowing it is normal.

Mary

POTS like it rhymes with spots.

N-C-S, they should know what you're talking about if, but they might not if they dont even know what its long name is, but if they know the long, then I can say pretty confidently they would know the short, and for OI I usually just say orthostatic intolerance.

I have the burping problem as well. My psychiatrist thinks that doing bio-feedback before, while, and after eating will help. Hasn't made a difference yet, but it might. I don't know if it bugs me that much anyways to go to that much work actually...

I too will have trouble getting a full deep breath while I am upright. I don't know why our bodies do this but I think it has to do with two things.

First off, when you are laying flat your body can expand more to take in air, and it forces you to breath into your stomach, not your chest.

Second I think that it might have something to do with our bodies functioning better while laying down as appose to being upright.

There isn't much I have found to help with the breathing, but perhaps just concentrate on breathing into your stomach, not your chest...if you don't know what I mean by that feel free to PM me.

Mary

I know you know what mine looks, like, but I don't know if I gave you the name. Its by the brand Empi. However mine wasn't exactly cheap...

Sorry this is so long, I couldnt get the site to go on here so I just copied it.

Hope it helps!

Page 1

Some Facts To Help You Sleep

Introduction

Many people may have trouble sleeping from time to time. Frequent, persistent

problems with sleep may affect your mood, your daily activities and your

general health. However, you don?t have to live with sleepless nights.

Many factors can affect sleep:

? General health (hormonal changes, pain, allergies)

? Life habits (diet, smoking, alcohol and caffeine intake)

? Psychological problems (depression, anxiety)

? Trauma or abuse

? Personality style

? Stress

? Reaction to medications or withdrawal from medications

? Poor sleep habits

? Sleep disorders such as obstructive sleep apnea, restless leg syndrome,

narcolepsy, etc.

This material is meant to tell you about sleep and give you information that may

help you establish and maintain sleep habits that allow you to get a good night?s

sleep.

Stages of sleep

During the night, you typically have four to six sleep cycles (figure 1). There are

two types of normal sleep ? rapid eye movement (REM) and non-rapid eye

movement (NREM). Throughout the night, you continually move from one stage

or type of sleep to another in cycles that can last about 90 minutes each.

As you pass from being awake to being asleep, you are in stage 1 NREM sleep.

There are three other stages of NREM sleep. Stage 2 is the most frequent stage.

Stages 3 and 4, which are called delta sleep, are the most restful.

Page 1 of 7 MC2593-16 Some Facts To Help Sleep

Page 2

REM sleep is a period of increased brain activity. Although your brain is active,

your body does not move. During this phase, you dream and your body functions

speed up. Early REM periods are very short, usually five to 10 minutes long.

During the later part of the night, REM periods are longer, usually lasting about 20

minutes.

Sleep restores us mentally, emotionally and physically. Sleep may help strengthen

the immune system to fight off viruses and bacteria. Lack of sleep affects not only

your energy level, but also your mental and social functioning. Losing sleep over

long periods can cause irritability and difficulty concentrating. Insomnia (inability

to sleep) also may be related to depression.

Figure 1. Cycles of sleep

2

Awake

REM

REM

REM

REM

Awake

stage 1

2hr 3hr 4hr 5hr 6hr 7hr 8hr

Hours of sleep

Stage of sleep

stage 2

stage 3

stage 4

1hr

Page 2 of 7 MC2593-16 Some Facts To Help Sleep

Page 3

General sleep information

Sleep, body temperature, and alertness are all part of a daily rhythm or cycle that is

regulated by our brains. For all life on earth, this cycle usually lasts about 24 hours

and is called a circadian cycle. Because our bodies tend to operate on 24-hour

cycles, what we do during the day affects how well we sleep at night.

Most people seem to need seven to eight hours of sleep a night to feel rested. But

that varies from person to person. If you feel alert and function well during the

day and do not feel like sleeping when you sit down and relax, you probably get

enough sleep.

Good sleep habits (sleep hygiene techniques) can help you establish and maintain

healthy sleep/wake patterns.

Medications and other substances and your sleep cycle

Many prescription and over-the-counter medications can cause sleep problems.

Some common medications that can disturb your sleep pattern may include:

? Some medications for high blood pressure.

? Any medication containing stimulants, such as prescription diet pills.

? Caffeine-containing medications.

? Bronchodilators, such as those used to treat asthma and chronic obstructive

pulmonary disease (COPD).

Illegal drugs such as marijuana, cocaine, amphetamines and heroin are also known

to disturb your sleep cycle, preventing you from getting the rest your body needs.

Alcohol is another substance that can change your sleep cycle and result in poor-

quality sleep. If you use alcohol, do so in moderation and be aware of the dangers

of alcohol dependency.

If you suspect that a medication or other substance may be causing your sleep

problem, discuss your concerns with your health care provider. Never stop taking a

medication without first discussing it with your health care provider. Before taking

over-the-counter medication to help you sleep, talk with your health care provider.

3

Page 3 of 7 MC2593-16 Some Facts To Help Sleep

Page 4

You may have to try these techniques for three to four weeks before you start to

notice an improvement in your sleep. You may notice disruptions in your sleep

before you start to see an improvement. Use the techniques that work for you.

Create a pleasant, comfortable place in which to sleep

? Wear comfortable pajamas or nightgowns. They should not be too loose or too

tight.

? Make your bed and bedroom as comfortable as possible for sleeping. Have clean

linens and pillows and a firm, comfortable mattress.

? Make sure your room stays dark during your sleeping hours.

? Keep the temperature comfortable. A room that is too warm can cause problems

sleeping.

? Keep your bedroom as quiet as possible. A fan or other devices can produce

?white? noise to drown out noises that can disturb your sleep, such as snoring,

dogs barking, traffic noise, running of the furnace or air conditioner, etc. If you

use a fan, point it away from you.

? Get rid of your clock. Don?t just turn it around; hide it in the dresser furthest

away from your bed. If necessary, set it to wake you up. Grandfather clocks ?

or any clocks that chime on the hour ? also can disrupt your sleep.

? Do not allow pets to sleep in your bedroom.

? Do not use your bed for activities that do not help you fall asleep.

Develop good habits for a good night?s sleep

? Go to bed and get up at the same time every day of the week ? people who do

this tend to have the most efficient sleep.

? Establish daytime routines.

? Eat your meals (especially dinner) at the same time each day.

? Avoid heavy meals two to three hours before going to bed. A light snack with

milk, cheese or crackers at bedtime may be helpful.

? Try to exercise 20 to 30 minutes most days, at least four to six hours before

bedtime. Exercise increases your body temperature, which initially makes it

harder for you to fall asleep. However, four to six hours later, your metabolism

and body temperature will drop more than if you had not exercised. And that

will help you sleep.

? If you bathe in the evening, take a bath two to three hours before bedtime. As

with exercise, a hot bath increases your body temperature, which makes it harder

to fall asleep. It may take two to three hours to cool down after a hot bath.

Tips to help

you sleep

4

Page 4 of 7 MC2593-16 Some Facts To Help Sleep

Page 5

? Limit naps to 30 minutes at least six to eight hours before bedtime. Some people

function better if they don?t nap during the day and others feel refreshed after a

ten-minute power nap. You may need to experiment to see if napping works for

you. However, do not nap for more than 30 minutes to avoid reaching a deeper

stage of sleep, which will make you feel groggy when you wake up. If you get

sleepy during the day, increase your activity level.

? Spend less than eight hours in bed.

? Read or watch a video if you become ?antsy? and begin to worry about getting

to sleep.

? Don?t drink liquids for three hours before bedtime if you often wake up during

the night to go to the bathroom.

? Don?t drink beverages with caffeine (coffee, tea, and soda) after 12 p.m.

(or 10 hours before your bedtime). Don?t consume more than three caffeinated

drinks in one day.

? Find time each day to relax if you are under stress. A diary to record stressful

events (do this earlier in the day) may help you to recognize stress-related

symptoms.

? Avoid falling asleep in front of the TV, only to wake up and go to bed. For the

most restorative sleep, use the bedroom.

? Don?t worry about an occasional poor night?s sleep. There is most likely no

noticeable difference in your performance the next day.

Have a routine to prepare for a good night?s sleep

? Reserve one to two hours before bedtime for quiet, relaxing activities.

? Develop a bedtime ritual. Do things that give you a sense of security and

comfort. Check the lights and heat, lock the doors and perform personal

grooming activities.

? When you are in bed, focus on images that are pleasant and relaxing.

? Don?t go to bed until you feel sleepy.

? Don?t use your bedroom for worrying, studying, discussing problems,

arguing, or paying bills.

5

Page 5 of 7 MC2593-16 Some Facts To Help Sleep

Page 6

Tips for shift workers

Many people who work different shifts report difficulties with sleep. Working

different shifts may make it difficult to maintain a regular sleep cycle.

If your work schedule changes, the following tips may help you get a good

night?s sleep:

? Limit the caffeine you use.

? Make a transition time between work and sleep. Use this time to do quiet,

relaxing activities.

? Make the bedroom dark and soundproof and hide the clock.

? Tell people around you that you are sleeping during the day and do not wish

to be disturbed. Turn off the telephone.

? Establish a new routine right away. Work with your family, so family routines

can be adjusted, if necessary.

If you have a partner who snores

Discuss the snoring with your partner. You can try to create a white noise

background (a fan) or use ear plugs. However, if snoring keeps you awake,

you may want to sleep in another room. Go to bed together as usual, but if your

partner starts to snore, leave the bedroom and find some other place to sleep.

Good partnerships are made during the day when both partners feel well rested.

Staying in bed with a snoring partner will not improve your relationship.

If snoring is associated with breathing pauses, gasps or snorts, encourage your

partner to be evaluated for sleep apnea.

When to

contact your

health care

provider

6

You may want to contact your health care provider about your sleep problems if

you notice the following:

? It has been a month since you have been able to sleep soundly or fall asleep

when you want to.

? Your inability to sleep affects your functioning during the day.

? You snore or have irregular breathing.

? You think your sleep problems may be related to depression or anxiety.

? You need pills to get to sleep.

? You generally feel anxious and the anxiety is associated with poor sleep.

? You often feel sleepy when you need to be alert such as when you are driving.

If you have questions about this information or concerns about your sleep,

talk with your health care provider.

Page 6 of 7 MC2593-16 Some Facts To Help Sleep

Page 7

BARBARA WOODWARD LIPS PATIENT EDUCATION CENTER

Mrs. Lips, a resident of San Antonio, Texas, was a loyal patient of Mayo Clinic for more than 40 years. She was a self-made business leader who significantly expanded

her family?s activities in oil, gas and ranching, even as she assembled a museum-quality collection of antiques and fine art. She was best known by Mayo staff for her

patient advocacy and support.

Upon her death in 1995, Mrs. Lips paid the ultimate compliment by leaving her entire estate to Mayo Clinic. Mrs. Lips had a profound appreciation for the care she received

at Mayo Clinic. By naming the Barbara Woodward Lips Patient Education Center, Mayo honors her generosity, her love of learning, her belief in patient empowerment and her

dedication to high-quality care.

?2005

MC2593-16rev0405

Page 7 of 7 MC2593-16 Some Facts To Help Sleep

Sorry, I forgot to reply about your exercise question. My doctor at Mayo in MN is always stressing how important exercise is. For me right now I walk for about a half hour a day, and run for about a minute or two within that. For her, I do think its important to push yourself, but just not too much. You aren't really going to be able to know what is exactly "too much" for her, until you experiment a bit with the exercising. I would start with a 5-10 minute walk, close to home in case she starts to feel a lot worse. She is most likely going to feel sick when exercising, but it is just something that has to be done to get well.

When she does exercise she might feel sick the next day. But it is important that she still gets up and perseveres through the pain and such, because she cant just "give in" and let her body rest all the time and lay down when she feels ill, or she is only going to get worse. However if she does feel sick the next day, I would recommend cutting back a minute or two on exercise, so that she wont feel ill the next day because of it, and gradually work up to 30 minutes or so a day.

Now all this I am telling you, is my advise only once you know she does have POTS, until then, it might not be the best idea to push herself as much, but she can still exercise, within reason.

Best of luck to you both,

Mary

That is my issue with sleeping mainly. I am tired most of the time but I cant sleep because of pain. Now that I have figured out how to sleep with pain, I actually have more trouble sleeping some nights, if I am NOT in pain, its pretty goofy. Anyways, I take Nortiptyline for my pain at night, and it is also a sedative, so that helps. I aslo take Melatonin, which is a supplament that is naturally in your body, it is the hormone that tells your body when to sleep and when not to basically. You could ask your doctor about both types of medications.

This is a link my doctor gave me for helping with sleeping. Ok my computer isnt working right now, but I will try and post it later tonight when I can bring up the link. Sorry...

Good luck!

Mary

It tastes really good, I thought anyways, I tried it, but then was feeling ill, and so my mother thought it was from the sweeteners, but I don't know that it was, I think it was just because I didn't get as much salt as I usually would from the Gatorade. I too have been gaining weight from drinking so much Gatorade.

I do not know of anyone here who has hypoglycemia, so unfortunately I don't know how much help all of us will be. But hopefully there will be someone with some helpful tips. My only suggestion would be to drink salt water when you have to fast for medical procedures, because as gross as that is, its what your body needs and all you could take in since you cant have sugar.

Best of luck to you, I hope you figure out something that works when you have to fast.

Mary

You definitely need to take in some salt so that the liquids will stay in you. I drink Gatorade and Pedialite when I need to rehydrate. I drink Gatorade everyday anyways as my liquid source, but I will use Pedialite when I need it too. I like the Pedialite pops, they are like freezez, only they have the electrolytes, which is good when you don't feel up to drinking or eating, because you can get it slowly, but you still get the liquid and electrolytes, and then I usually feel up to drinking once my body is doing a little better from the Pedialite pop.

Good luck, hope you're feeling better soon!!!

Mary

Hello,

I'm sorry your having so much trouble. Its hard I'm sure when your daughter is so young and cant work with the doctors much on her own to explain things, so I'm sure its hard to communicate with them. That is rather unfortunate that they think she does not want to attend school. Hopefully now that summer is here she will be able to rest and feel a bit better with not having school as somewhere she needs to be.

Her symptoms definitely sound like symptoms POTS patients would have. And since the other tests you have done come back negative, it does seem like a very good guess. I would suggest having a Tilt Table Test, or TTT. I know the doctors might not be super helpful in getting this scheduled, but perhaps if you speak to her doctor your seeing right now about the idea of POTS, he might be more up to doing the test. This is the tests that almost all of us here used to be diagnosed, so its a very good idea to get one, if you feel POTS is what she has.

If she has had a recent growthspirt, that also would make her more likely to get POTS after her surgery. Or even if she is just going through puberty. Perhaps you could educate your doctor about POTS more and tell him how much it sounds like what your daughter is going through. I truly hope your doctor will be more helpful, and get this test scheduled. If it would end up telling you that she doesn't have POTS, don't give up. You'll figure this out eventually!

Best of Luck!!!

Mary

http://www.diamondathletic.com/img/prod/430a3badb2a08.jpg

Thats the one that I have...and it cost $800. It has a lot of functions, but I'm not sure if they all work... I think I might look into that more.

Mary

I think you should be fine, unless you notice anything drastic, like everyone has said. I take 10 mg of midodrine and lay down and I am fine, so like they said laying down and issues dont really usually affect POTS patients.

Good luck, dont worry too much!

Mary

Hey, yep like Rachel said, it lowers our heart rate, hopefully more than our BP.

For me I am on a BB and a vasocontrictor, which makes my blood pressure higher. I take Midodrine. It might be worth looking into with your doctor, if your having lots of problems with low BP.

Good luck!

Mary

I get diarrhea everyday as well, my doctor just said its from the stress I put on my body from pushing it so much everyday, and that its just something I have to deal with...so he wasn't much help there, but I just take some imodeum and that usually helps.

Thanks for sharing your story, thats quite the long hall you have been through. I hope that your remission lasts a long time! It is very inspiring!!

Happy early Birthday!!!

Mary

Hey, I already sent you a PM but after reading your post I have a few things to add.

Your "main" symptoms are how mine started out last year when I first got sick, they have since all stayed but I just can control them more, however I have added fatigue and dizziness with some fainting, so hopefully that wont happen to you.

I actually ended up buying a TENS unit last year, yes the $800 is a lot, but we were just starting out renting it paying $50 a month, and then eventually ended up buying it. It has been a life saver some days, but I don't end up needing it as much lately, now that things are more under control which is good, but its still awesome to have, because I definitely do still need it!

It sounds like we deal with school in the same way, I usually work myself really hard, and most of the time teachers wouldn't know that I am in a lot of pain during the day at school. But if I do ever need extensions and such, they are very good about giving them to me, without me having to go through higher people. I actually do not have 504 plan, and my school is small enough that everyone kinda knows. And my father is on the school board and has been for years, so I am kinda just "trusted" more than the average kid, however that doesn't mean that I don't have to earn that trust, I guess you could say. So fortunately I have not had to make a 504 plan, but I might end up having to in the future. I'm really glad that you are able to stay in school through all this, because there are so many kids I know who drop out and home school once they get sick, so stick with it, I really think thats the way to go, to be happy and get better!

Feel free to PM me anytime!!

Mary

Hey Denise, Thats wonderful that you had a doctor who knew things at the ER. It is so much easier to take care of yourself when you have people treating you that know what they are talking about, I'm very happy for you, congrats!

I do not have cysts along my spine or anywhere for that matter, but I think some people have issues with that type of thing, I just dont know whether its related to dysaut. or not.

Good luck,

Mary

I too was just told to take in as much as I can, but I am only 16, so thats going to be a bit different than you. I would ask your doctor what a good limit for you would be, everyone with be different for various reasons.

I too will light a candle and take a moment to stop and pray for her. I think thats a great idea, thanks sue!

Hello Carly,

I'm glad you found us. You have had a rough couple of years dealing with all of this, sorry you had to go through all that, and still do.

I'm glad that even though your doctors haven't officially diagnosed you, that you found out about POTS and now know how to treat yourself better.

You said you don't have the money to go to a place that specializes in dysaut. like Mayo. I go to Mayo in MN, and I just though I would share with you the things that they do to "treat" patients, since you don't have a doc who is helping you, and it definitely sounds like POTS to me.

First off they had me increase my liquids and salt. They had me start out by taking in 2 liters more of liquids a day than I had previously, and now I am supposed to take in as much as I can. As for salt it is the same, as much as my body can handle. I also am starting taking salt pills to increase my sodium.

The other main thing they stress about at Mayo is exercise. I am exercises for 30 minutes a day, of upright exercise. I am also starting to run a little bit each time... hoping that soon I can make my exercise more strenuous.

They also put me on metoprolol, which you are on, but I take my 20 minutes before I get out of bed in the morning, which makes mornings go a lot smoother. I am also on midodrine, and nortryptiline and melatonin for sleeping.

I don't know if that will help much but, I hope things start to get better for you now that you have more support in your life!

Oh I also use compression stockings, which are very helpful.

Best of luck, and Welcome!

Mary

P.S. One more thing that came to mind, is that even though you do need to pace yourself, you really need to push yourself as well. For me that is more important than pacing myself. There are a lot of things in life that I want to do right now, and so I have made the decision that since nothing is actually harming my body with this illness and I just will be in pain or feel crappy, it is ok to push myself. I just have to be able to handle the "crash" and persevere through it and get the things done that I need to do. So I guess I am just telling you that you might need to make the decision of whether or not you would rather accomplish all the things you want to do while feeling ill, or feel healthy but not get everything done as quickly as you want, or at all. Either option is fine, and just becuase I chose to feel crappy but get to do more of what I want, does not mean its the right choice. But I think that for me, I needed to sit down and figure out what was more important to me, so that I could go on with life, and have a plan.

Sorry for such a long post,

Mary

It could just be from the skin there getting too much blood. I dont know why it would cause that, but our skin looks the way it does because it has circulation in it getting it oxygen, so maybe if it has too much blood it looks as though its almost burned.

Do you wear compression stockings? I wear them all the time, and they make a world of difference for my blood pooling, it used to be very bad, but now it is much more controlled.

Also are you on a vasoconstrictor? I dont know what clonidine and clonipin are, so perhaps they are. But if you arent on one, midodrine helps with my blood pooling issues in my legs, as it constricts the blood vessels and moves the blood back up my legs.

Best of luck...perhaps putting lotion on your legs and feet before you go to bed would help with the "burned" affect in the morning.

-Mary