Rachel

Hi all,

I haven't posted in a while because it has just been too hard. But I'm back (at least for today). It's been good to catch up with the news. I've missed a lot!

Anyway, my question is about finding an attorney. I thought I had found one that I was willing to go with. But I'm not so sure anymore. I haven't been impressed with their competence this week as I have been trying to communicate with them. So I'm going to see if I can find someone else. Has anyone worked with one of the law groups that practices in all 50 states that they would suggest? Or do you know of anything in particular that I should be looking for in an attorney? I'd appreciate any input you can give.

I do have some good news. I finally found a doctor who works with POTS in Alaska and is willing to take me as a patient! So I have an appointment with this neurologist next week. I'm hoping she'll be able to give some good answers and direction.

Rachel

I have a ray of hope. I tiny ray of hope, but a ray nonetheless. When I was at the doctor today my doctor was surprised to hear that I had gotten my disability claim denial because she had never received anything from social security. It turns out that someone just copied my records and sent them in, but never told the doctor that the SSA was also wanting a letter from her. So I called my caseworker at the local SSA office. She said that if I send in the doctors letter with my paperwork for an appeal that my case might be reconsidered and not have to go to the judge. I'm not getting my hopes too high because it isn't too likely, but I'm hoping a little bit!

So my question is, does anyone know exactly (or kind of exactly!) what they are wanting in a letter from my doctor? Miriam, you mentioned a week or so ago that you had a video for doctors that gives advice on how to get the ssdi paperwork done and approved. Did you have a chance to watch that? Anything I should pass on to my doctor?

I appreicaite your help so much.

Rachel

Hi. I'm back from my doctors appointment. I have tried salt tablets in the past, but they never helped. But maybe they were keeping me from getting worse. So my doctor and I decided to give them another try. We're also changing my medication again to see if that helps at all. And, GOOD NEWS! I have finally found a cardiologist in the state who knows about POTS! My doctor here is going to have my stack of records from the last 10 years copied and sent. Hopefully I'll be able to get in for an appointment soon. Thank you all for your advice. It is helpful to learn how others deal with the weakness and stumbling.

Rachel

I was just wondering - how much weakness is "normal" for POTS? Lately, even though I rest often, my weakness has gotten quite extreme, more than it has ever been in 10 years. I stumble a few times every day just walking in our tiny house because I don't have the strength to take even a few steps easily. My legs start to give out, but so far I have been able to catch myself in time or fall into a chair. Also, I've been losing my balance when I am standing still. I rarely stand still for more than a few seconds because I'll get faint. But I do stand still briefly sometimes. Just last night I bent over and was drying my hair. Next thing I knew I was falling backwards. Thankfully my husband was behind me to catch me. It happened again this morning as I was brushing my teeth. Usually I sit down to do this, but for some reason I stayed standing. Within 5 seconds my body just started leaning backwards without me even realizing it at first. Does this kind of stumbling or loss of balance happen to any of you? I'm going to the doctor tomorrow, so I'll talk to her about it. But I'd also like to hear what some "POTSies" have to say.

Rachel

Thank you so much, Sophia. This has answered many of my questions and has helped me get started on my SSDI appeal. Your information came at the perfect time!

Rachel

Hi!

So glad to hear that you made it back, even though POTS is still a struggle. Hope you enjoy the new house you are living at and that it's a good situation for you. Hang in there and keep smiling!

Rachel

Hi all,

Thanks for the advice. I still need more...

I am in the process of appealing the decision made on my ssdi. So I'm going to have to start looking for an attorney. Have any of you used attorneys through the free legal services? Is it better to get an attorney that you pay? I'm just afraid that I'm not going to be able to get one that will work for a percentage of my back pay since it will be so little. I'm only 24 and have never been able to work full time, so a portion of my back pay won't be all that much. So if the free attorneys do a good job, that would be an easier route to go. Let me know your opinion.

Also, how much current information am I going to need to be approved? I've mentioned before that I don't have a POTS specialist. And all of my tests are old. I tried numerous medications and treatments 8 years ago, but none of them worked. So I don't really have much recent documentation except that I'm saying my POTS is getting worse.

My doctor was supposed to call me before she filled out the form for ssdi. But she didn't, so I think that at least 3/4 of my symptoms never even made it to the form. That made me really mad. Because my denial was based on her report. So I'm not sure how the appeal will go when my doctors office didn't even give a complete report to begin with. Makes me look like I'm not really telling the truth. Sorry, I'm venting. I'll stop!

I'm grateful for any more info you can give. This ssdi stuff is all new to me and I don't know what to do!

Rachel

Hi Persephone,

It is Thursday, so I was thinking about you. I hope you are doing well enough to travel back to the university today.

Hang in there and let us know how you're doing.

Rachel

Steph,

I have a ringing sound too, but that is a different sound.

I have wondered if the sound is my heartbeat. But there are times that my heart is pounding really hard, but I don't hear it in my head. And then there are times that my heart isn't pounding all that hard, but I hear a pounding noise in my head. I never mentioned anything about it to my doctor because it wasn't a very bothersome symptom, so I never even thought about it when I had an appointment with her.

So what did your doctor say about that symptom? I'm just curious.

Rachel

Steven,

I get really bad headaches sometimes like you described. I get them if I stand up too quickly and I also get them when I wake up from passing out. Standing up slowly helps - either the headache won't come, or it won't be as severe. Also, when it does come, if I tilt my head back as far as I can the headache goes away fairly quickly. I don't know if that works for anyone else, but it might be worth a try.

Rachel

What kind of documentation do I need to be collecting for the whole SSDI process? Social Security doesn't really tell you what they want. They say that if they need more information or tests, they'll just ask. Well, they didn't. Would it be helpful to keep a journal of my daily activities and how I feel each day? Do I need to keep having tests to prove that I'm not getting better? I figured I'd better ask all of you who have been through this. You'll probably give me a better answer than I'll hear from the Social Security Department.

Thanks,

Rachel

Tearose,

Many have already replied, but I wanted to let you know that I, too, was so sad to hear that you were denied. My heart just ached when I read your post.

I must agree with the others - KEEP FIGHTING! Don't give up.

Best wishes,

Rachel

Yeah, it does kind of come in waves. Not long waves, but waves nonetheless.

Rachel

Boy, do I feel better after reading your post!!! The same thing happens to me! I've never been sure what is going on or why it happens, but it does! I've only had it happen as I'm waking up. It happened for the first time about 8 years ago when I was in highschool. I heard this loud noise and thought that my mom had a load of laundry in the washer (which was just outside of my bedroom) and that it was off balance and rocking around like crazy. It was so noisy it woke me up. I later found out that the house was very quiet at that time. Another time I was home alone and heard this loud noise as I was waking up. I thought someone was pounding on our door, so I went to answer it, only to discover that no one was there. So, don't worry, you're not nuts! Or, if you are I'm right there with you!

Rachel

Dear Anna,

I understand what it is like to have all of those symptoms, but not be able to get them to go away. My POTS goes up and down too. It used to be up and down from good to okay. But now it is just up and down from almost okay to bad to very bad. Like you, I never responded well to medication. I was actually off all meds for I think 7 years because there weren't any left for me to even try.

I'm sorry that all the things you have tried aren't working. It is that way with me too. Sometimes diet works. Sometimes it doesn't. Some days there just really isn't anything you can do to feel any better. It may get better in time. Keep hoping.

I don't have many answers to your questions. I'm not a teacher in a classroom, though I have worked with children most of my life. I have taught Sunday School, Childrens Church, and Bible Clubs. Last year I was still able to keep up with doing a Bible Club once a week and Children's Church once or twice a month. But I can't even do those anymore. I don't have the energy to keep up with the children. And because I am so tired I just can't teach with enthusiasm and passion anymore.

I'm sorry that there aren't any easy answers or simple ways to cope. It's hard. It's a day to day struggle. Keep pressing on, but don't push too hard. Learn to listen to your body. If it is telling you that you need to slow down or get extra rest, it is best to listen to it.

Do you have any close friends or family who would be willing and able to help you out? One of the biggest things that has helped me has been the ladies from my church who come over once in a while to clean my house, bring a meal, or visit with me when I'm unable to go out.

Keep us posted on how you're doing.

Hang in there,

Rachel

Hello Dizzy,

I'm sorry I don't have any recovery stories for you. But don't give up hope. There will be better days and worse days and days that we just have to find pleasure in the small things in life.

About the pain - have you tried an air bed? I don't have fibro, but I good friend of mine does. The air bed is what helps her the most with her pain. I slept on it one night and it was NICE! You don't feel the pressure on your body like you do on a regular mattress.

Sending a smile,

Rachel

It's me again, and I have a couple more questions about SSDI. If I keep applying and am approved, say, the 4th time, does the back pay go all the way back to the very first time I applied? Also, is it hard to get an attorney? If they only work for a cut of my back pay then it won't be very much at this point. But if the back pay does indeed go back to the very first time you apply then maybe an attorney would be willing to take my case a little ways down the road.

Rachel

Just wanted to say thank you to everyone who replied. I appreciate you sharing your stories and your thoughts on the subject. Though POTS doesn't seem to cause miscarriages, I am still holding to my theory that the two can be related in some cases. So until I can find proof otherwise, I'm going to keep doing my research. You should see my stack of papers and information at home!

Thanks again,

Rachel

Amy,

I'm glad you found a specialist who really wants to work with you and figure things out. That is great!

It has been several years since I had an echocardiogram. I don't remember at all what my pulmonary pressure was. And I don't think I even have those records at home to check.

However, I do have problems with being short of breath. And, actually, it is two different types of short of breath. Sometimes my airway actually starts to close off. I recently found that this is probably due to my M2 receptors not functioning properly. But asthma medications do not work for me. There are other times that I get short of breath for no apparent reason. I breathe normally and my lungs fill up with air, but I feel like I am holding my breath. The doctors never did figure out what caused this.

What exactly happens to you when you get short of breath? Do the doctors have any idea what causes it?

Rachel

Thank you for all of your answers.

Well, I guess all of my nausea IS related to POTS. I've always wondered why I sometimes throw up so much in the mornings. There were times when it would happen 10 days out of the month. But now it is usually just once or twice a year.

Steph, I'm the same as you - when I throw up it's usually just acid from my stomach. I have found that drinking a few sips of Coke helps. It doesn't make me stop throwing up, but it dilutes the acid a bit and helps to take the burn away.

Wow, I didn't realize that it was so very difficult to get SSDI. You'd think that if someone can't stand for more than 2 minutes, can't prepare their own meals, can't work, etc. that it would be easy to qualify. Guess not! Well, I'll keep trying. Thanks for the encouragement.

Rachel

Thank you all for your responses and for sharing your experiences, painful though they may be.

I wish I had more answers for you! I'm not exactly sure how I was diagnosed with the antibodies for M2 receptors. It was back in 1996. I had been going to a cardiac electrophysiologist for a while, but there were never any medications that worked for me. 10 years ago there weren't as many treatments as there are now, so we quickly ran out of options. After a year I was sent to Johns Hopkins to be seen by a neurologist there. At that time they were doing some sort of study and they used my blood in that study. That was when they found an antibody that the neurologist said was causing my POTS.

I have been trying since October to get my medical records from Johns Hopkins so that I can get more information on the antibody, but they still have not sent me the detailed information on that blood work. The only written evidence I have of an antibody to M2 at this point is the report from my cardiac electrophysiologist after she spoke on the phone with the neurologist at Johns Hopkins. When I get the comments on the blood work from Johns Hopkins I will let you know if I find any helpful information in there.

I'm not sure how common it is to check for antibodies. I think the only reason I was checked is because I had failed all medication and a study happened to be going on at Johns Hopkins that related to POTS.

No, I haven't been to a high-risk OB yet. I hope to go someday. But we don't have the best insurance, so I can't afford it at this point.

Hopefully I'll be able to share some more information with you in a few weeks on the M2 receptors.

Rachel

1) Name: Rachel

2) Favourite book: "A Voice in the Wind" and "An Echo in the Darkness," the first two books in The Mark of the Lion series by Francine Rivers

3) Favourite film: "The Sound of Music"

4) Things that make you happy: my husband, chicken nuggets, a nice bath, a phone call or visit from a friend, shrimp scampi

5) Something about you that no one here knows... Three years ago I played Maria in "The Sound of Music" at the local community theater.

Hello everyone,

Sorry for posting so many questions, but I still have so many unanswered ones! I don't have a POTS specialist to go to here in AK, so I have to find all of my answers on the internet. When I was diagnosed with POTS so little was known that the doctors weren't able to help much. Many of the symptoms I had weren't known to be symptoms of POTS. I only realized this past fall that my nausea is due to POTS.

My first question is about nausea. Many of you have mentioned that you suffer from it. I was just wondering what POTS nausea is like. I many times get sick to my stomach in the evenings. And sometimes I wake up feeling very nauseous, but eventually it goes away. But can POTS nausea ever cause throwing up? Sometimes I get this weird "thing" where I wake up (always around 5-7am) and throw up every 10 or 20 minutes for a couple of hours. Then I go back to sleep, wake up a couple hours later like nothing ever happened. This has gone on for years, but the doctors never knew why. So I was just wondering if that sounds like it is related to POTS, or if it's something totally different.

Hope I'm not making you nauseous reading this!

My other question is about Social Security Disability benefits. I am not able to work at all because my symptoms are so severe. Many days I can't even take care of myself, much less cook or clean the house. So I applied for Social Security Disability, but after a several month process was denied because I'm "not disabled." Does anyone have any experience with this? Is it difficult to get disability benefits due to POTS? Do I just need to keep applying every few months?

Sorry for another long post full of questions! But thanks for your help,

Rachel

For those of you who have POTS, I was wondering if you know the cause of your POTS. I realize that many people either can't or don't get to the point of having to discover the cause of their POTS, but if you do know I'd like to hear what the doctors discovered.

The main reason I am interested is I am trying to see if I can find a connection between my POTS and the miscarriages I have had. I realize that miscarriages are very common, many occuring before a woman even knows she is pregnant. And I know that there isn't any evidence that POTS actually causes miscarriages and that there are many women who have POTS and also have successful pregnancies. But I am wondering if there is a connection for some of us.

My POTS has a autoimmune cause. My body makes antibodies for M2 muscarinic acetylcholine receptors. These receptors are found in the heart, throughout the brain, the uterus, and many other places in the body as well. Because my M2 receptors don't work right, the messages from my brain to my body get blocked and this causes my POTS. I am wondering if this same root problem of my POTS also causes my miscarriages.

Do any of you know the cause of your POTS? And if you don't mind sharing, have you had any difficulty getting pregnant, or maintaining a pregnancy? If you have had a miscarriage, was a cause ever determined?

I have been working on researching this online, but unfortunately there isn't much information. Most of the studies have been done on rat uteruses. Which, although it can shed some light, it can't be translated directly to people.

P.S. My heart goes out to those of you who have gone through the painful loss of a child in a miscarriage.

WAREAGLE,

I'm sorry you are having so many bad days with your health. It's tough when you feel like you're trapped by a body that won't work properly and you can't see any improvement.

As for treatment, you just have to keep trying. You might get lucky and the 4th medicine you try will work. Or it might not be until later on that you find a medication that works for you. However it goes, don't give up. Keep trying and keep fighting.

As for deconditioning, it can be hard to work against, but do what you can. The YAZ exercises are a good place to start. I don't always exercise officially. Sometimes my "exercising" is just making the bed (if I even stay out of it long enough!), sweeping the floor, or doing laundry. Learn your limitations and just do what you can do physically. I have had to learn not to push myself too hard. If I push beyond comfortable limits I will be in pain and be very weak the following day.

You might want to speak with your doctor about finding a cause for your dysautonomia (Do you have POTS?). Many people aren't able to find a cause, but if you do know it might help in knowing which medicine would most likely work.

I've had POTS for 10 years, possibly my whole life, and have tried numerous medications. Eventually I actually stopped going to the doctor because there was nothing more they could do. I found out on my own that certain foods either helped or exacerbated my symptoms. I used to be on a diet that included lots of raw fruits and vegegables. That helped me more than any medicine ever did. I always felt my best if I ate only fresh fruit for breakfast. If I ate anything else my heart would pound. And with my lunch and supper I ate lots of raw vegetables. I never got back to normal, but came close for a time. I guess it took about 6 months of eating lots of raw fruits and vegetables to feel close to normal. It is difficult now to get the fruits and vegetables I need since I live in the "middle of nowhere" in Alaska. But diet doesn't help my symptoms like it used to. I have actually found a medicine now that helps at least a little - Mestinon. But it is the only one that ever has.

I pray that things go well when you see your doctor and that you will be able to find some good options for treatments. And when you need hope, this forum is a good place to start!

Hope you get to feeling better,

Rachel