Frank

Ramakentish,

My wife also has the over stimulation problem. She can no longer drive safely and sometimes even the TV is too much for her. She has the same experience the others have in stores. She finds it helps when she knows exactly what she wants and where it is so she can try to ignore everything else, like wearing blinders.

She always wears sun glasses when she goes out because the light bothers her eyes and to cut down on stimulation.

She always wears ear plugs because even normal sounds are to loud. Too much noise and she gets sick.

I wish you well.

Frank

Dayna,

My wife saw the neurologist who put her through blood testing and autonomic testing. Revealing she had Dysautonomia including orthostatic intolerance.

The neurologist referred her to the cardiologist, pulmanary specialist, pain managenent specialist, and gastroenterologist. It won't surprise me if she sees an endocrinologist.

Frank

Katherine

While it's probably unrelated to her Dysautonomia, my wife's head and face are very sensitive to touch, e.g. she cannot comb or brush the top of her head.

Frank

Linda,

I spoke with Linda Smith of the NDRF (651-267-0525) and found her very informative and personable. I think she could provide you with a greater perspective and answer some of your questions.

Frank

Linda,

I don't know the details of your condition, but you might ask the doctor if you could have Dysautonomia. Compare the Dysautonomia symptoms to what you have.

Did they do other autonomic testing which could identify what you have or at least what you don't have. Have they done a complete blood work-up.

Best of luck.

Frank

Amy,

It's a consistent problem which gets worse the more she talks or the more she exerts herself.

We've had good experience with Froedert. Dr. Peltier my wife's neurologist, is very thorough. We'll see some other Froedert docs over the next few months (cardiologist, gastroenterologist, PCP, pain management specialist).

Frank

Geneva,

My wife, Christine, has scalp pain, pins and needles, and pressure. The neurologoist who saw her recently described it as a Post Traumatic Neuralgia. I had read up on Post Occipiatal Neuralgia, but discounted it as she had no pain behind her eye.

The pain management specialist put her on Topamax to see if it will calm down some of the nerves. We'll have a better idea in a month if it's helping.

Frank

Dear blackwolf, morgan617, and LindaJoy,

I really appreciate your sharing your personal experiences. They set my mind a little more at ease to know that she won't ever stop breathing because of this.

Christine and I will see the pulmonary specialist at Froedert Hospital which is a teaching hospital on April 22nd. I'll let you all know how it goes.

Frank

Hello Everyone,

My wife, Christine, is worried since breathing is becoming more of an issue for her and because she feels burning in her chest. Her Echocardiogram though came back normal.

It tore at my heart last week to see her struggle for a minute or two to get some air. She couldn't even talk, and she had this panicked/distressed look. She didn't pass out or turn blue, but that was small comfort.

Does anyone have experience with sort of thing and what can be done about it? My wife is loquacious, but now she often has me speak on the phone for her.

Frank

Tearose,

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

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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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

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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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

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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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.

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.

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

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.    morgan

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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

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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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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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

I responded to a similar question:

Persephone,

I read a news article about a new application of an existing drug, Pyridostigmine, about which Dr. Philip Low of the Mayo Clinic said, "We wanted a 'smart drug' that would only increase blood pressure when standing up, and not when lying down."

Frank

Persephone,

I read a news article about a new application of an existing drug, Pyridostigmine, about which Dr. Philip Low of the Mayo Clinic said, "We wanted a 'smart drug' that would only increase blood pressure when standing up, and not when lying down."

Perhaps you could investigate this. I hope school goes better for you.

Frank

Hi everyone

Sorry I've not been about for ages. I'm just out of hospital. college went horribly wrong..I got a flu bug when I was there and in the end every single time I stood I was going tachy.

It was far worse than ever before though, and I ended up in hospital. THey thought I'd broken my neck the first time I'd landed so awkwardly, but I was sent home and told to get on with it. Then I got much, much worse until I couldn't do anything for myself.

They were lovely in the hospital, told me they knew about POTS but it's extremelyrare (only 6 other people in the whole of Scotland with it) and no cure exists. THey have me on midodrine and betablockers but these attacks still happen, it's just that my pulse is slower when they do.

They said there's nothing else they can do for me and sent me out in a wheelchair.

The thing is, I wonder if ablation might do some good. My GP is on the case with that at the moment- has anyone tried it and had it WORK?

They told me that only young people get POTS- is that true? They also said that because you rarely hear about older people with it, it might just go away as I get older. Was I being fobbed off, or can POTS really just go away all of its own accord?

Hope everyone is well, sorry I'm not!

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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