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I'm concerned about my wife. Just diagnosed with


Frank
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I've never taken part in a forum before now, but my wife, Christine, is scared and doesn't get along with computers.

It all began with a car accident 11 years ago. The doctors told her she would be fine because they couldn't see anything. Later when she complained of pain the doctors suggested she see a psychologist.

Prior to the accident she ran, lifted weights, did aerobics, danced, and generally was an over achiever and do gooder. She was also one of those people who could bend and twist every which way. It all ended, but she wouldn't give up.

A year ago we got half the answer. She had about 60 small inoperable ligament tears in the low back and cervical area. In the low back the ligaments were so stretched that the low back/pelvic areas were unstable, i.e. she throws her back out two to three times per day by doing simple things such as sitting down the wrong way.

You're probably familiar with the strange symptoms that arose and worsened over time:

Orthostatic Hypotension

Orthostatic Intolerance

Tachycardia

Extremely low blood pressure

Wide swings in blood pressure

Sudden drops in blood pressure

Syncope/near syncope

Palpitations

Chest Discomfort

Lightheadedness

Dizziness

Excessive Fatigue

Exercise intolerance

Gastrointestinal problems

Nausea

Weakness

Shortness of breath

Mood swings

Anxiety

Migraines

Tremulousness

Noise (Hyperacusis)/Light sensitivity

Insomnia

Frequent urination (retention: vulvadynia)

Temperature regulation problems

Cognitive issues/brain fog/forgetfulness

Coordination and balance frequently impaired

Tinnitus

Clothing except when loose fitting causes burning in my legs.

Ears especially sensitive to cold

Hypersensitive to pain

Even touching my head causes facial pressure and strange sensations in my head

Scrubbing my head when washing causes pain as can the water from the shower head

Sensation of pins and needles especially severe in my head at times

Burning pain (ice cold burning)

Working on the neck muscles, shoulder muscles, and the muscles at the base of the skull; causes facial pressure, nausea, and at times dizziness.

Joint tenderness and stiffness

Painful intercourse, lack of feeling, no climaxes (Vulvadinia)

Depression

Dry thinning hair

Dry eyes (Chronic Corneal Erosion)

Acid Reflux

Christine finally obtained a correct diagnosis of Dysautonomia (both sympathetic and para sympathetic) from a doctor at the Medical College of Wisconsin (MCW) just a month ago. We'll see her Monday to discuss treatment.

We already met with the MCW pain management doctors who prescribed Topamax for her head pain (which the neurologist is trying to understand) and Tamadrol for the back pain. They will ease her into the Topamax before she starts the Tamadrol.

Has anyone experienced the strange head pains Christine has?

I read about a drug called Pyridostigmine that is used to alleviate orthostatic hypotension. Does anyone have experience with this drug?

My wife cannot wrap her mind around the idea that there is no cure for any of it, and that she'll never get back what she lost.

I would appreciate any words of wisdom. By the way, Christine and I have a beautiful and precocious 21 month old that God sent to light up our lives. She's the perfect outlet for our love and affection.

Frank

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:) Hi Frank & Christine - Welcome to the forum - I am sorry that Christine has so many of the symptoms you listed - I was diagnosed 3 years ago with POTS, I also have MVP, Epstein Barr Virus and was hospitalized for over 4 months 3 years ago and had so many gastrointestinal problems that I was on TPN, which is Intravenous feeding. Aslo, the lightheadedness and dizziness was so bad that I thought I was going to die. I am on lots of meds now, and as you can see I didn't die :P:D and still have my sense of humor so let Christine know that POTS or dysautonomia has never killed anyone yet and even though it changes the way that we need to live our lives and some adjustments are harder than others, life will get better eventually. I am on Topamax, still get lots of headaches though, am also on midodrine(pro-amitine),pindolol,5 mg.lexapro per day for dizziness and florinef. I can no longer work - I had a great job with the State Govt and now I tire real easily, still have lots of gastro and gyno problems resulting from this, get out of breath easily,and deal with other issues but I think positive and focus on what I still can do and not so much on what I can't any more or what I am missing out on. The drug you read about,prygesterine(I know I am not spelling that right) has lots of side effects and is used to treat patients with myestesia gravis - Make sure that your doctor goes over the benefits and risks with you carefully before deciding whether or not Christine would want to try it. I wish you both good luck with this - If you want to email me, you can. Have a good night. Beth in NJ
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Hello frank - just a short note of encouragement. I'm sure you will get reponses from others re: your wife's symptoms as well as answers about meds. But having someone you love so debilitated and have so little answers, is something i can certainly relate to. It can feel very lonely and so very frustrating. It does somehow help I guess to know that there are so many other hurting people out here just trying to hold on as well. My best to you and your family as you continue on this journey. hang in there!

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Christine & Frank,

I know how hard it is to accept a chronic illness. I had to stop working in October, I was a school nurse and I loved my job. I did respite care on weekends and even adopted a boy when he was in 3rd grade (he is now 14). I can't give you much advice on acceptance as I struggle with it everyday. I get angry, then sad, then depressed and withdrawn. I am 49 and still have alot of living I want to do. Christiine, you are lucky to have a supportive husband. My husband is too, but to be honest he is sick of hearing about my symptoms and feels helpless. ( I complain way too much and I realize there is not a thing he can do). I have alot of the symptoms on your list. I don't have the head pain. Do you have fibromyalgia? I haven't tried the mestonin yet, my urine sodium is too low. I have heard it causes diarrhea when you first start taking it. I plan on trying it when my sodium gets higher.

I wish I had some words of wisdom. I know how hard this illness is to cope with. I think I'm dying everyday. I will keep you in my prayers. I have the low BP and syncope daily and can no longer drive. Elastic stockings do help and keeping hydrated and eating lots of salt helps too. I try to lay with my legs up for an hour a day, I lay on the floor and put them on the couch. I take alot of antacids for the nausea. Sip on coke and eat saltines. Enjoy sex LOL it's been forever. Taking Klonopin at bedtime has helped my insomnia. My balance is terrible but a physical therapist I saw did a treatment for "crystals in my inner ears" that helped both my dizziness and nausea.

I didn''t have much luck seeing a psychologist. There are good ones out there but I didn't really click with the one I saw. I found myself resenting her because she was healthy and I wasn't. Well I'm rambling here.

Don't give up, there is always sunshine behind the clouds (I'm told).

Do you live in Wisconsin. I do. Keep your focus on your child, it's always helped me I used to hold the kids in my lap at school and feel their energy entering me and giving me strength to go on.

Dawn

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Hi, Christine, Hi, Frank,

I'm new to the forum too, but I read your letter and I felt, even though I don't know very much about myself yet, that I wanted to write you and give you some support and encouragement. I was diagnosed with POTS ten years ago, but I was never given any information about it: what it even was, let alone its symptoms or what to expect. I have also been diagnosed with fibromyalgia, which causes me a great deal of pain. Christine, yes, I feel nauseous when someone touches my shoulders and especially the back of my head, when they are both in pain. My scalp becomes tender, but I think that's more from the neck pain and stiffness pulling on my scalp and making it appear to be in pain. I have many, many of the symptoms you have, and there are many days I am terrified that I'm not going to make it, but I always do. I, like you, have a husband who is very supportive, and that helps so very much. I find myself living minute to minute sometimes when I feel so bad. But, I've read many of the letters from others who are suffering and have taken their advice. I've added more salt to my diet and I drink gatorade daily. Both seem to really help. I eat small meals througout the day and make sure to not stand for very long. I prop my feet up as much as possible. I do make sure to walk some, though, as lying around will make it worse, I think. I currently take Cardizem CD, a calcium channel blocker, for my tachycardia, Zoloft to help slow me down and Xanax when I feel a really bad spell coming on. I have an appointment at the Cleveland Clinic Foundation on April 6th for a tilt table test to see what kind of dysautonomia I have--hopefully we'll find out then and be able to really start dealing with it. I pray the same for you, Christine, that you will find answers and be able to start getting back on your feet. It will happen. In the ten years that I've struggled, there have been only a few, maybe four, really rough times for me. I have symptoms every day, but most I can deal with. I've been blessed when I compare myself to some people whose stories I've read. Please know that there is help out there. Continue to search out a doctor until you find one who is willing to listen to you and help. Frank, continue to be Christine's rock because there will be days when she cannot be strong and will really need you to support her physically and emotionally. Blessings to you both. Christine, it will get better. You'll be in my prayers and on my heart. Please remember that, even though it feels like it, you're not alone.

Linda

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Dear Frank and Christine,

Welcome!

Frank, I commend you for coming to the site for your wife - this will mean a lot to her!

I also understand most of the symptoms Christine has. I was running 3-5 miles per day when I got a virus which caused my POTS. I had to quit working and rest. It's so amazing how this illness can change your life!

I hope and pray that Christine will improve and that you will both grow through this experience as my husband and I have.

Lisa

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Hi Frank and Christine, welcome to the forum! And how nice to have a spouse that cares enough to post! I have a supportive husband, but not too much beyond oh that's too bad it's been another bad day. However I must say, that in the past he and my pcp pushed for the ablation I had and then discovered it was the worst thing to do, so now they are both terrified of making me worse. I've had just about every symptom you mentioned. I haven't had anything beyond the ablation and basic tests, have not been accepted into any programs back east and so will never find out what my body does to make it so sick. I do not faint, but lately have had a major drop in my BP out of no where, so will probably need another echo. You will get lots of input and support on this site, and somedays, I'm sure it will be helpful, because nothing else will be. This is a very frustrating and discouraging illness and is just as hard on the family as it is on the person with the illness. We need to remind ourselves of that sometimes I think. A lot of people don't have much support, so those of us that do try not to take it for granted. My husband has been forced to be celibate for over a year, so I know this is very difficult for him. As it must be for you. I hope you live in an area where you can receive some answers. If you live in the east, you are much better off as far as doctors and studies go. This is an up and down disease, like a rollar coaster ride that never ends. I worked from the time I was 13 until 2003. I am 50. I had to give up driving. This has been a very difficult journey, going from very independent to being almost totally dependent on others. I pray you and Christine have lots of strength and faith to get through this together. Hang in there, and remember, this is a great place to vent if nothing else! It is a haven here for most of us. I hope you find that to be true for you too. :P morgan

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Hi Frank and Christine,

Welcome to both of you. I think you will find this is a friendly and knowledgeable group of people. I wish Christine that you didn't have reason to join us but know that all of us have felt the way you do at one time and most do find that improvement comes.

I have or have had I think every condition you listed. You asked in particular about the weird head pain or sensations. Yes, I get these! 2 nights this week when I was removing my shirt -- arms above head -- the tingling (pins and needles) and then tenderness started immediately and lasted 10 minutes. Other times I get a large circular area near the top of my head -- kind of like a baby's soft spot I think -- and it gets so tender I can't even brush my hair. It may last a few days and then be gone. I have had MRIs and MRA and nothing has ever been found to explain what brings on these unusual sensations. Doctors have no idea what is causing this but it always goes away on its on. I do find that if I will stop what I am doing and lie down, it usually lessens in intensity. I also have hypovolemia so when these sensations happen I try to increase my fluids as well.

I have had chronic neck pain and upper shoulder pain since the onset of POTS and while this "coat hanger" pain has been documented by an expert, I cannot find any explanation for why some of us have it. I have been going to massage therapy for 2 years and while it helps a great deal, although it is never gone completely. If I stop going the pain starts again in earnest. In the beginning, I was so sensitive and could become dizzy that the therapist had to use the lightest of touch. I think for me this is caused because of hyperadrenergic -- anything, like touch will over stimulate my brain and body and cause POTS symptoms. Over time, my brain and body adjusted.

I would also like to add that if you have any sinus or allergy issues it can make any head stuff worse. I had a massage on Thursday and felt facial pressure and a head weirdness and I know it was because my sinuses where congested.

I hope that you can find some relief Christine. Believe that your life will get better but you have to learn (this is the hard part) to make and accept lifestyle changes. It takes a whilel to come to terms with this disability. I am lucky to have a supportive husband and he readily works with me on how we can do things better for me. Sounds like Frank is there for you as well so you are lucky too!

good luck to you both and your beautiful child.

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Oh, Christine and Frank...My thoughts and prayers are with you...I hope that you, Christine, will soon be seeing some improvement. I join with my fellow friends here with their advice and support.

I have been taking Mestinon since October. It seems to be helping. I have been able to give up Midodrine among other medications--such as beta blockers, DDAVP.

Think positive thoughts!

Lois

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Hi, and welcome here. You've received some lovely letters and great advice! I just have time now for a quick note, but I wanted to tell you and LindaJoy to also try wearing medical compression hose (30-40 compression). Some wear thigh highs; others also need compression around the belly. Many of us wear them daily; they help enormously with blood pooling, and they keep blood flowing back up to the heart & brain. I feel sooo much better when I'm wearing them than when I don't, so I only take them off to sleep. Depending on your insurance, they may be covered under durable medical goods, so ask your doctor for a prescription.

Best to you,

Merrill

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Guest tearose

Hi you three! Welcome to the family.

I'm a little late, it seems like you have heard all the best suggestion!

I just wanted to say welcome and keep looking for answers.

My favorite way to get through some rough times or quiet times is reading through the old posts. I always learn something new or helpful.

best regards, tearose

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Christine & Frank,

I know how hard it is to accept a chronic illness.  I had to stop working in October, I was a school nurse and I loved my job.  I did respite care on weekends and even adopted a boy when he was in 3rd grade (he is now 14).  I can't give you much advice on acceptance as I struggle with it everyday.  I get angry, then sad, then depressed and withdrawn.  I am 49 and still have alot of living I want to do.  Christiine, you are lucky to have a supportive husband.  My husband is too, but to be honest he is sick of hearing about my symptoms and feels helpless. ( I complain way too much and I realize there is not a thing he can do).  I have alot of the symptoms on your list.  I don't have the head pain.  Do you have fibromyalgia?  I haven't tried the mestonin yet, my urine sodium is too low.  I have heard it causes diarrhea when you first start taking it.  I plan on trying it when my sodium gets higher.

I wish I had some words of wisdom.  I know how hard this illness is to cope with.  I think I'm dying everyday.  I will keep you in my prayers.  I have the low BP and syncope daily and can no longer drive.  Elastic stockings do help and keeping hydrated and eating lots of salt helps too.  I try to lay with my legs up for an hour a day, I lay on the floor and put them on the couch.  I take alot of antacids for the nausea.  Sip on coke and eat saltines.  Enjoy sex LOL it's been forever.  Taking Klonopin at bedtime has helped my insomnia.  My balance is terrible but a physical therapist I saw did a treatment for "crystals in my inner ears" that helped both my dizziness and nausea.

I didn''t have much luck seeing a psychologist.  There are good ones out there but I didn't really click with the one I saw.  I found myself resenting her because she was healthy and I wasn't.  Well I'm rambling here.

Don't give up, there is always sunshine behind the clouds (I'm told).

Do you live in Wisconsin.  I do.  Keep your focus on your child, it's always helped me I used to hold the kids in my lap at school and feel their energy entering me and giving me strength to go on. 

Dawn

Dawn,

We also live in Wisconsin although my wife grew up in Chicago.

She has the symptoms of fibromyalgia. In fact for about 10 years that was their diagnosis.

Funny you mention driving. She is thinking of driving at night when there is less sensory stimulus.

She cannot use the stockings because touch is painful.

Have you ever tried Emetrol for nausea?

My wife takes Tamezapan to help her sleep. She sleeps a lot better, but she dreams constantly. How is Klonopin in that respect?

Christine loves kids. She worked a short time as a teacher's aide when she was unable to finish college because of her condition. Our daughter, Eliana, can help her pull out of depression when she's in a lot of pain.

Frank

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Linda,

Christine already had many of the different autonomic tests including the tilt table at the Medical College of Wisconsin. Dr. Peltier called her to let Christine know she has Dysautonomia. Tomorrow we discuss the test results and a treatment plan with the doctor. From what I can tell by looking at her symptoms, both the sympathetic and parasympathetic systems are involved.

On her own Christine decide to go back to her habit of eating like a bunny (my description). She's cutting back on carbs and sugar, and going for the vegetables and fruit. Not only that, but a year ago I introduced her to grape Gatorade and now she's hooked.

Thanks for your concern and prayers.

Frank :rolleyes:

Hi, Christine, Hi, Frank,

I'm new to the forum too, but I read your letter and I felt, even though I don't know very much about myself yet, that I wanted to write you and give you some support and encouragement.  I was diagnosed with POTS ten years ago, but I was never given any information about it:  what it even was, let alone its symptoms or what to expect.  I have also been diagnosed with fibromyalgia, which causes me a great deal of pain.  Christine, yes, I feel nauseous when someone touches my shoulders and especially the back of my head, when they are both in pain.  My scalp becomes tender, but I think that's more from the neck pain and stiffness pulling on my scalp and making it appear to be in pain.  I have many, many of the symptoms you have, and there are many days I am terrified that I'm not going to make it, but I always do.  I, like you, have a husband who is very supportive, and that helps so very much.  I find myself living minute to minute sometimes when I feel so bad.  But, I've read many of the letters from others who are suffering and have taken their advice.  I've added more salt to my diet and I drink gatorade daily.  Both seem to really help.  I eat small meals througout the day and make sure to not stand for very long.  I prop my feet up as much as possible.  I do make sure to walk some, though, as lying around will make it worse, I think.  I currently take Cardizem CD, a calcium channel blocker, for my tachycardia, Zoloft to help slow me down and Xanax when I feel a really bad spell coming on.  I have an appointment at the Cleveland Clinic Foundation on April 6th for a tilt table test to see what kind of dysautonomia I have--hopefully we'll find out then and be able to really start dealing with it.  I pray the same for you, Christine, that you will find answers and be able to start getting back on your feet.  It will happen.  In the ten years that I've struggled, there have been only a few, maybe four, really rough times for me.  I have symptoms every day, but most I can deal with.  I've been blessed when I compare myself to some people whose stories I've read.  Please know that there is help out there.  Continue to search out a doctor until you find one who is willing to listen to you and help.  Frank, continue to be Christine's rock because there will be days when she cannot be strong and will really need you to support her physically and emotionally.  Blessings to you both.  Christine, it will get better.  You'll be in my prayers and on my heart.  Please remember that, even though it feels like it, you're not alone.

Linda

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Morgan,

Christine's condition has only brought us closer, but I wish the Good Lord had instead presented us with the opportunity of living in Tahiti on an unlimited expense account. :rolleyes:

We live in Wisconsin and drive to Milwaukee to see Dr. Wendy Peltier, a neurologist with a subspecialty or at least a real interest in Dysautonomia. Dr. Peltier works at the Medical College of Wisconsin and does clinical work at Froedtert Hospital (in the same complex of buildings). Froedtert also has the ability to conduct autonomic testing. :lol:

Just today Christine told me she is not ready to talk about doctors, and syndromes, or treatments. She knows it's real but it's too much right now. So some times I need to tone down my research and enthusiasm. There are moments when she needs to remind me that she's my wife and not a patient.

It's so hard for Christine to be so dependent on others when not so long ago she was the one who gave to others. She yearns to do so much more for our daughter and me.

We appreciate you encouragement and especially your prayers.

Frank :P

Hi Frank and Christine, welcome to the forum!  And how nice to have a spouse that cares enough to post!  I have a supportive husband, but not too much beyond oh that's too bad it's been another bad day.  However I must say, that in the past he and my pcp pushed for the ablation I had and then discovered it was the worst thing to do, so now they are both terrified of making me worse.  I've had just about every symptom you mentioned.  I haven't had anything beyond the ablation and basic tests, have not been accepted into any programs back east and so will never find out what my body does to make it so sick.  I do not faint, but lately have had a major drop in my BP out of no where, so will probably need another echo.  You will get lots of input and support on this site, and somedays, I'm sure it will be helpful, because nothing else will be.  This is a very frustrating and discouraging illness and is just as hard on the family as it is on the person with the illness.  We need to remind ourselves of that sometimes I think.  A lot of people don't have much support, so those of us that do try not to take it for granted.  My husband has been forced to be celibate for over a year, so I know this is very difficult for him.  As it must be for you.  I hope you live in an area where you can receive some answers.  If you live in the east, you are much better off as far as doctors and studies go.  This is an up and down disease, like a rollar coaster ride that never ends.  I worked from the time I was 13 until 2003.  I am 50.  I had to give up driving.  This has been a very difficult journey, going from very independent to being almost totally dependent on others.  I pray you and Christine have lots of strength and faith to get through this together.  Hang in there, and remember, this is a great place to vent if nothing else!  It is a haven here for most of us.  I hope you find that to be true for you too.  :D  morgan

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Geneva,

Christine is a wonderful and a spiritual person, but she is still in the denial phase. She looked forward to doing so much for her husband and daughter. This July is our third wedding anniversary, and this May is Ellie's (short for Eliana) second birthday party. Christine is planning it as if it were a miniature first birthday party since she collapsed just before the cutting of the cake last year.

What did the doctors say about all your symptoms since POTS cannot account for all of them?

The doctors at Froederdt Hospital's Pain Management Clinic recommended Topamax for her head pain. Have you any experience with this medication?

Christine's head also bothers her when she raises her arms. If she looks up or down it bothers her. If she reads, writes, or speaks on the phone, it hurts. We ended up getting a cordless phone with a speaker phone feature on both the base and the handset.

Thank you for your kind wishes.

Frank :rolleyes:

Hi Frank and Christine,

Welcome to both of you.  I think you will find this is a friendly and knowledgeable group of people.  I wish Christine that you didn't have reason to join us but know that all of us have felt the way you do at one time and most do find that improvement comes.

I have or have had I think every condition you listed.  You asked in particular about the weird head pain or sensations.  Yes, I get these!  2 nights this week when I was removing my shirt -- arms above head -- the tingling (pins and needles) and then tenderness started immediately and lasted 10 minutes.  Other times I get a large circular area near the top of my head -- kind of like a baby's soft spot I think -- and it gets so tender I can't even brush my hair.  It may last a few days and then be gone.  I have had MRIs and MRA and nothing has ever been found to explain what brings on these unusual sensations.  Doctors have no idea what is causing this but it always goes away on its on.  I do find that if I will stop what I am doing and lie down, it usually lessens in intensity.  I also have hypovolemia so when these sensations happen I try to increase my fluids as well.

I have had chronic neck pain and upper shoulder pain since the onset of POTS and while this "coat hanger" pain has been documented by an expert, I cannot find any explanation for why some of us have it.  I have been going to massage therapy for 2 years and while it helps a great deal, although it is never gone completely.  If I stop going the pain starts again in earnest.  In the beginning, I was so sensitive and could become dizzy that the therapist had to use the lightest of touch.  I think for me this is caused because of hyperadrenergic -- anything, like touch will over stimulate my brain and body and cause POTS symptoms.  Over time, my brain and body adjusted.

I would also like to add that if you have any sinus or allergy issues it can make any head stuff worse.  I had a massage on Thursday and felt facial pressure and a head weirdness and I know it was because my sinuses where congested.

I hope that you can find some relief Christine.  Believe that your life will get better but you have to learn (this is the hard part) to make and accept lifestyle changes.  It takes a whilel to come to terms with this disability.  I am lucky to have a supportive husband and he readily works with me on how we can do things better for me.  Sounds like Frank is there for you as well so you are lucky too!

good luck to you both and your beautiful child.

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Merrill,

Thank you for your suggestion. So far insurance has posed no problem, but unfortunately Christine is hypersensitive to touch so she doesn't wear anything tight. Hopefully we'll find something else.

Frank :rolleyes:

Hi, and welcome here. You've received some lovely letters and great advice! I just have time now for a quick note, but I wanted to tell you and LindaJoy to also try wearing medical compression hose (30-40 compression). Some wear thigh highs; others also need compression around the belly. Many of us wear them daily; they help enormously with blood pooling, and they keep blood flowing back up to the heart & brain. I feel sooo much better when I'm wearing them than when I don't, so I only take them off to sleep. Depending on your insurance, they may be covered under durable medical goods, so ask your doctor for a prescription.

Best to you,

Merrill

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Tearose, :rolleyes:

I always welcome suggestions that can help my wife. I'll try to go through some of the old posts.

I picked up a book from the National Dysautonomia Research Foundation which helped provide a foundation for understanding Dysautonnomias:

The NDRF Handbook For Patients with Dysautonomias by Dr. David Goldstein and Linda Smith, ISBN 0-913848-06-9.

Thank you for your thoughtful welcome.

Frank :lol:

Hi you three!  Welcome to the family.

I'm a little late, it seems like you have heard all the best suggestion!

I just wanted to say welcome and keep looking for answers.

My favorite way to get through some rough times or quiet times is reading through the old posts. I always learn something new or helpful.

best regards,  tearose

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Frank,

First, I just want to say I understand about the denial. I was there myself many times in the first year. I KNEW that IF I could just find the right doctor, I would get the right treatment and I would get better, return to my life and put this illness phase behind me. Unfortunately, that wasn't to be although I have found improvement...very gradually over years and consider myself one of the luckier ones.

There is a very good article in one of the DINET newsletter about the stages of living with chronic illness. I strongly recommend looking it up and when Christine is ready, letting her read it.

In answer to what do the doctors do for the head issues that can't be thought to be POTS....well, my doctors don't know what the cause is so they take all precautions and research each symptom for KNOWN causes. If all those tests are normal, it is decided that indeed the dysautonomia IS most likely the cause. No, I do not take meds for them. I was on a BB for 2 years but stopped because I became intolerant (too low bp no matter how small the dose) and Florinef which I stopped after 3 years because it kept me in a WIRED state all the time.

Trouble looking up or down was actually the symptom that allowed doctors to dx me. Standing HR wasn't enough to pinpoint. When I have pushed too much this symptom comes back and I can't read, use PC, watch TV or bend over to do anything. Again, doctors think this is all part of the dysautonomia.

Sounds like Christine is listening to her instincts about the bday party. I find I do fair when we have family/friends in small groups. Big gatherings are really, really hard because of overstimulation.

hope you and Christine have a good appointment with the doctor this week.

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Christine & Frank,

I know how hard it is to accept a chronic illness.  I had to stop working in October, I was a school nurse and I loved my job.  I did respite care on weekends and even adopted a boy when he was in 3rd grade (he is now 14).  I can't give you much advice on acceptance as I struggle with it everyday.  I get angry, then sad, then depressed and withdrawn.  I am 49 and still have alot of living I want to do.  Christiine, you are lucky to have a supportive husband.  My husband is too, but to be honest he is sick of hearing about my symptoms and feels helpless. ( I complain way too much and I realize there is not a thing he can do).  I have alot of the symptoms on your list.  I don't have the head pain.  Do you have fibromyalgia?  I haven't tried the mestonin yet, my urine sodium is too low.  I have heard it causes diarrhea when you first start taking it.  I plan on trying it when my sodium gets higher.

I wish I had some words of wisdom.  I know how hard this illness is to cope with.  I think I'm dying everyday.  I will keep you in my prayers.  I have the low BP and syncope daily and can no longer drive.  Elastic stockings do help and keeping hydrated and eating lots of salt helps too.  I try to lay with my legs up for an hour a day, I lay on the floor and put them on the couch.  I take alot of antacids for the nausea.  Sip on coke and eat saltines.  Enjoy sex LOL it's been forever.  Taking Klonopin at bedtime has helped my insomnia.  My balance is terrible but a physical therapist I saw did a treatment for "crystals in my inner ears" that helped both my dizziness and nausea.

I didn''t have much luck seeing a psychologist.  There are good ones out there but I didn't really click with the one I saw.  I found myself resenting her because she was healthy and I wasn't.  Well I'm rambling here.

Don't give up, there is always sunshine behind the clouds (I'm told).

Do you live in Wisconsin.  I do.  Keep your focus on your child, it's always helped me I used to hold the kids in my lap at school and feel their energy entering me and giving me strength to go on. 

Dawn

Dawn,

We also live in Wisconsin although my wife grew up in Chicago.

She has the symptoms of fibromyalgia. In fact for about 10 years that was their diagnosis.

Funny you mention driving. She is thinking of driving at night when there is less sensory stimulus.

She cannot use the stockings because touch is painful.

Have you ever tried Emetrol for nausea?

My wife takes Tamezapan to help her sleep. She sleeps a lot better, but she dreams constantly. How is Klonopin in that respect?

Christine loves kids. She worked a short time as a teacher's aide when she was unable to finish college because of her condition. Our daughter, Eliana, can help her pull out of depression when she's in a lot of pain.

Frank

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Christine & Frank,

I know how hard it is to accept a chronic illness.  I had to stop working in October, I was a school nurse and I loved my job.  I did respite care on weekends and even adopted a boy when he was in 3rd grade (he is now 14).  I can't give you much advice on acceptance as I struggle with it everyday.  I get angry, then sad, then depressed and withdrawn.  I am 49 and still have alot of living I want to do.  Christiine, you are lucky to have a supportive husband.  My husband is too, but to be honest he is sick of hearing about my symptoms and feels helpless. ( I complain way too much and I realize there is not a thing he can do).  I have alot of the symptoms on your list.  I don't have the head pain.  Do you have fibromyalgia?  I haven't tried the mestonin yet, my urine sodium is too low.  I have heard it causes diarrhea when you first start taking it.  I plan on trying it when my sodium gets higher.

I wish I had some words of wisdom.  I know how hard this illness is to cope with.  I think I'm dying everyday.  I will keep you in my prayers.  I have the low BP and syncope daily and can no longer drive.  Elastic stockings do help and keeping hydrated and eating lots of salt helps too.  I try to lay with my legs up for an hour a day, I lay on the floor and put them on the couch.  I take alot of antacids for the nausea.  Sip on coke and eat saltines.  Enjoy sex LOL it's been forever.  Taking Klonopin at bedtime has helped my insomnia.  My balance is terrible but a physical therapist I saw did a treatment for "crystals in my inner ears" that helped both my dizziness and nausea.

I didn''t have much luck seeing a psychologist.  There are good ones out there but I didn't really click with the one I saw.  I found myself resenting her because she was healthy and I wasn't.  Well I'm rambling here.

Don't give up, there is always sunshine behind the clouds (I'm told).

Do you live in Wisconsin.  I do.  Keep your focus on your child, it's always helped me I used to hold the kids in my lap at school and feel their energy entering me and giving me strength to go on. 

Dawn

Dawn,

We also live in Wisconsin although my wife grew up in Chicago.

She has the symptoms of fibromyalgia. In fact for about 10 years that was their diagnosis.

Funny you mention driving. She is thinking of driving at night when there is less sensory stimulus.

She cannot use the stockings because touch is painful.

Have you ever tried Emetrol for nausea?

My wife takes Tamezapan to help her sleep. She sleeps a lot better, but she dreams constantly. How is Klonopin in that respect?

Christine loves kids. She worked a short time as a teacher's aide when she was unable to finish college because of her condition. Our daughter, Eliana, can help her pull out of depression when she's in a lot of pain.

Frank

Frank,

I take zofran for severe nausea dramamine over the counter otherwise. I do much better generally during the evening. Especially with riding in cars. With autonomic dysfunction we all seem to feel really bad in the mornings. One neurologist told me it is because we produce all of our adrenaline while we're sleeping. Klonopin is the only medicine I've ever taken for sleep, it doesn't cause bad dreams. It's a long acting benzodiazopine that is given for seizure disorder (which I don't have). Magnesium also helps a great deal with sleep it relaxes our muscles. Trying a high protein diet without any sugar may help if it's fibromyalgia. Reassure Christine she'll have days that are better than others. Symptoms one day and not the next. My husband calls it "the spinner card." Also, it's very hard to depend on others when we have been independent. I hate it. It's very hard to accept. I was so independent before I truly understand how she feels. I'm going to Marshfield next weds. to see a neurologist who deals with dyautonomia. He is moving to Milwaukee in May.

Take Care. Hi Christine :)

Dawn

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