lmt033167

I took 1 dose of Toprol and had to go to the ER last year before I was dx with anything, so could it be your meds?

An EP gave me Toprol in hopes it would help control my pvc's and arrythmia's. In a couple of hours, my bp/hr went from normal to 70/40 40 and dropped even further after I got in the ER. They injected me with something and it stayed at 70/40 and hr of 40 for 11 hours. They said that's as good as it would get until the med ran out of my system since it was a time release 24 hr tab; they told me to go home and not take Toprol again and follow up with my EP.

I'm in the line of patients that have had doctors who don't listen, I wish we could bill them by the minute, then they would take an hour to talk to us

where do I get the shots with sodium in them? can you buy them or you have to have a script? I would like the name of them if I have to have a script so I can ask my dr when I go back

tia

I am petrified of walking too much, sometimes my HR goes up so fast makes me sob then it will drop to 40 in a blink...then it will stay low and my bp will do it's rollercoast bit and I'm left wondering if my dr's got my dx right or if something else is wrong.

My neuro thinks I may have an AI disease along with my other stuff going on and I know I have some type of neuropathy which makes walking that much more difficult and my family just does not understand even though they try and when I go out at the first inkling of dizziness I get terrified of passing out in public

I'm dreading Easter, my husband just told me we're doing lunch on the uncovered patio THEN doing easter egg hunt at 1pm...85degrees here

what do I do, ruin it for the other kids in the family or just grin and bear it and hope I don't get sick. I'm already talked about enough with how sick I've been the past year, makes me want to throw a hissy fit and tell them for once think about me instead of me always being the one to give in to what everyone else wants

sorry to sound so negative and childish, none of my family or friends really understand what I'm going through

We should survey to see how many POTS people there are versus other dysautonomias...If I can remember how to do a poll.

I'm a mix of confusion - at first I was dx with NCS, OI/OH cardioinhibitoray? and vasodepressor mix. but noticed without meds the past 2 months my bp rises really fast in a blink but then it crashes even faster sometimes.

Is it possible to have POTS and NCS, OI/OH at the same time?

I'm a mixed bunch of confusion I have NCS/OI & heart problems.

Most of the time, my hr/bp shoots up crazily (for me) only to drop to nothing in a blink and I'm grappling for something to hold on to until it steadies, other times hr/bp shoots up and stays there sometimes for hours. Sometimes the simple act of turning my head or position causes these things to happen too.

I have a pm/icd and when I get it interrogated they ask what were you doing this day? I look in my journal and tell them. Of course then they say, Oh that's not supposed to happen [ya think?] hmm maybe related to ANS dysfunction? then it's ahhhh that would explain it

LOL,LOL,LOL, LEAVE THEM YOU MIGHT JUST make someone's day! and get a free pass in......

lol good idea, I need all the help I can get

Hi Lisa,

Yes, that's the form you pointed me to last week. Thank you, and thanks for posting this for others.

I found a similar one online and had my doctor fill it out right away. He had to cross some things out and fill in by hand, like, "After sitting for the maximum continuous period, does this patient need to ALTERNATE POSTURES by standing or walking about?" he added "BY LYING DOWN."

I'm not sure social security will appreciate the smileys though

lol no clue how they got in there, going to try and fix it now

I wasn't sure if there were RFC forms here or not, I can't find them and tried to point someone else to them, but feel free to use mine, you may have to adjust some margins etc, but I used these when I first filed my claim and had my dr sign them after reading them.

RFC - Residual Functional Capacity Form

About What the Claimant Can Still Do Despite Impairment(s)

Name ___________________________ Social Security No. _____________________

INSTRUCTIONS: Please complete the following assessment based on your clinical evaluation and test findings.

You are not required to perform any special test of functional capacity to render your opinions on this form.

1. Nature, frequency and length of contact: _______________________

2. Diagnoses: _________________________________________________

___________________________________________________________

3. Identify all of your patient?s symptoms, including pain , dizziness,

fatigue, etc.

____________________________________________________________

____________________________________________________________

4. If your patient has pain, characterize the nature, location, frequency, precipitating factors

and severity of your patient?s pain.

_____________________________________________________________

_____________________________________________________________

5. Identify any positive objective signs:

___ Reduced range of motion:

Joints affected: ________________________________________

____Joint warmth

____Joint deformity

____Joint instability

____Reduced grip strength

____ Sensory changes ____ Trigger points

____Reflex changes ____ Redness

____Impaired sleep ____ Swelling

____Weight change ____ Muscle spasm

____Impaired appetite ____ Muscle weakness

____Abnormal posture ____Muscle atrophy

____Tenderness ____Abnormal gait

____Crepitus ____Positive straight leg raising test

Other clinical findings: ____________________________________________________________________________

6. Do emotional factors contribute to the severity of your patient?s symptoms and functional limitations?

____Yes ____No

7. Identify any psychological conditions affecting pain:

____Depression ____Anxiety

____Somatoform disorder ____Personality disorder

____Psychological factors

affecting physical condition

Other: _____________________________________________________

8. How often is your patient?s experience of pain severe enough to interfere with attention and concentration?

___ Never ___ Seldom ___ Often ___ Frequently ___ Constantly

9. To what degree is your patient limited in the ability to deal with work stress?

___No limitation ___ Slight Limitation ___Moderate Limitation

___Marked Limitation ___ Severe Limitation

10. Identify the side effects of any medication which may have implications for working,

e.g., dizziness, drowsiness, stomach upset, etc. ______________

_______________________________________________________________

11. Please mark the activities the patient CAN perform on a regular and continuing basis. ?A regular and

continuing basis? means 8 hours a day for 5 days a week, or an equivalent work schedule.

SITTING in a working position at a desk or table without reclining.

A) MAXIMUM CONTINUOUSLY sitting before alternating postures standing or walking about.

(Circle one please)

<15 min 15 min 1 hr 2 hrs 3 hrs >3 hrs

After sitting for the maximum continuous period, does this patient need to ALTERNATE POSTURES by

standing or walking about? (Check 1 please)

___ YES, by walking about.

___ YES, but standing in place is sufficient

___ NO, alternating postures is not medically indicated.

C) If so, HOW LONG does the patient need to stand or walk about before returning to a seated position

for another maximum continuous interval? (Circle one please)

<15 min 15 min 30 min 1 hr 2 hrs 3 hrs >3 hrs

D) Is it medically necessary for this patient to elevate the legs while SITTING to minimize pain?

(check one please).

____ Yes, BOTH legs

____ Yes, RIGHT leg only

____ Yes, LEFT leg only

____ No, it is not necessary to elevate either leg while sitting.

E) If elevation of the patient?s legs is medically necessary, what DEGREE of elevation is appropriate?

____ Elevation to chest level or higher

____ Elevation to waist level

____ Elevation to only six inches or less

F) TOTAL CUMULATIVE sitting during an 8 hour work day, NOT INCLUDING time spent standing or walking about.

(Circle one please)

<1 hr 1 hr 2 hrs 3 hrs 4 hrs 5 hrs 6 hrs >6 hrs

12. STANDING AND WALKING ABOUT: weightbearing ambulating.

A) maximum continuously STANDING OR WALKING ABOUT before alternating postures sitting or lying down.

(Circle one please)

<15 min 15 min 30 min 1 hr 2 hrs 3 hrs >3 hrs

After standing or walking about for the maximum continuous period, does this patient need to ALTERNATE

POSTURES by sitting lying down or reclining in a supine positions?

____ YES, by lying down or reclining in a supine position.

____ YES, but sitting in a working position at a desk or table is sufficient.

____ NO, alternating postures is not medically indicated.

C) If so, HOW LONG does the patient need to sit or lie down/recline before returning to standing or

walking about for another maximum continuous interval? (Circle one please)

<15 min 15 min 30 min 1 hr 2 hrs 3 hrs >3 hrs

D) TOTAL CUMULATIVE standing or walking about during an

8-hour work day NOT INCLUDING time spent sitting or lying down/reclining. (Circle one please)

<1 hr 1 hr 2 hrs 3 hrs 4 hrs 5 hrs 6 hrs >6 hrs

13. RESTING lying down or reclining in a supine position in bed or in an easy chair.

A) Does this patient need to REST for some period of time during an 8 hour work day? (Circle one please)

_____ YES, in addition to a morning break, a lunch period,

and an afternoon break scheduled at approximately 2 hour intervals, more rest is needed.

_____ YES, but a morning break, a lunch period, and an afternoon break scheduled at approximately

2 hour intervals is sufficient.

_____ NO, rest lying down or in a supine position in bed or in an easy chair is not medically indicated.

If so, WHY does the patient need REST for some period of time during an 8 hour work day?

(Check one please)

_____ To relieve pain arising from a documented medical impairment

_____ To relieve fatigue arising from a documented medical impairment

_____ Non-Applicable. rest as defined is not medically indicated.

C) If so, what is the TOTAL CUMULATIVE resting/lying down or reclining in a supine position needed during

an 8 hours work day?

<1 hr 1 hr 2 hrs 3 hrs 4 hrs 5 hrs 6 hrs >6 Hrs

14. LIFTING AND CARRYING (Check one at each weight level)

Weight in Pounds Never Occasionally Frequently Constantly

(no sustained/8hrs) (up to 1/3 of day) (1/3-2/3 of day) (>2/3 of day)

1-5 lbs. _______________ ________________ _______________ _____________

6-10 lbs. _______________ ________________ _______________ _____________

11-20 lbs. _______________ ________________ _______________ _____________

21-50 lbs. _______________ ________________ _______________ _____________

15. BALANCING when standing/walking

on level terrain _______________ ________________ _______________ _____________

(check one)

16. STOOPING bending the body

downward and forward by bending

the spine at the waist

(check one) _______________ ________________ _______________ _____________

17. POSTURES of Neck:

A) Forward Flexion _______________ ________________ _______________ _____________

(i.e. Looking down at a

table or desk)

Backward Flexion_______________ ________________ _______________ _____________

(i.e. Looking upward to ceiling/sky)

C) Rotation Right _______________ ________________ _______________ _____________

(i.e. Looking sideways to right)

D) Rotation Left _______________ ________________ _______________ _____________

(i.e. Looking sideways to left)

REPETITIVE USE OF HANDS

A) Reaching (i.e. extending the hands and arms in any direction)

Never Occasionally Frequently Constantly

RIGHT HAND _______________ ________________ _______________ _____________

LEFT HAND _______________ ________________ _______________ _____________

Handling (i.e. seizing, grasping, turning or otherwise working primarily with the whole hand)

RIGHT HAND _______________ ________________ _______________ _____________

LEFT HAND _______________ ________________ _______________ _____________

C) Fingering (i.e. picking, pinching or otherwise working primarily with the fingers)

RIGHT HAND _______________ ________________ _______________ _____________

LEFT HAND _______________ ________________ _______________ _____________

18. ASSISTIVE DEVICES FOR AMBULATING

A) Is a hand held assistive device medically required to aid the patient in walking or standing?

____ YES, to aid in BOTH walking and standing

____ YES, to aid in ONLY walking, not standing

____ NO

If so, what TYPE of hand-held assistive device is medically required?

___ CANE

___ WALKER

___ 2 CRUTCHES

___ 1 CRUTCH

C) If so, in what CIRCUMSTANCES is the hand-held assistive device medically required?

___ On ALL surfaces and terrains for all ambulation

___ ONLY on uneven surfaces and terrains or slopes

___ ONLY for prolonged ambulation

19. Are your patient?s impairments likely to produce ?good days? and ?bad days??

If yes, please estimate, on the average, how often your patient is likely to be absent from work as a

result of the impairments or treatment:

___ Never ___ About twice a month

___ Less than once a month ___ About 3 times a month

___ About once a month ___ More than 3 times a month

20. PERIOD OF RESTRICTION:

Has the patient?s condition existed and persisted with the restrictions as outlined in this Medical Source

Statement at least since ______________________?

___ Yes

___ No

If not, state the first date the patient?s condition existed and persisted with such restrictions:

______________________?

CERTIFICATION

By my signature appended hereto, I attest that I personally have answered each of the questions presented in this

Medical Source Statement assessment form and I believe the information contained herein to be true and accurate to

the best of my knowledge and professional judgment.

Dated _____________________

________________________________

Physician?s Signature

________________________________

Physician?s Name Printed

________________________________

Physician?s Address

RFC Mental

About What the Claimant Can Still Do Despite Mental Impairment(s)

Name: __________________________ Social Security No. ________________________

Please answer the following questions concerning your patient?s impairments.

1. Frequency and length of contact: ______________________________________________________

________________________________________________________________________________

___________

2. DSM-IV Multitaxial Evaluation:

Axis I _____________________________ Axis IV: _____________________________________

Axis II ____________________________ Axis V: Current GAF: _________________________

Axis III ___________________________ Highest GAF past year: ________________________

3. Identify your patient?s signs and symptoms:

a. Poor memory ______

b. Appetite disturbance with weight change ______

c. Sleep disturbance ______

d. Personality change ______

e. Mood disturbance ______

f. Emotional lability ______

g. Loss of intellectual ability of 15 IQ points or more ______

h. Delusions or hallucinations ______

i. Substance dependence ______

j. Recurrent panic attacks ______

k. Anhedonia or pervasive loss of interests ______

l. Psychomotor agitation or retardation ______

m. Paranoia or inappropriate suspiciousness ______

n. Feelings of guilt/worthlessness ______

o. Difficulty thinking or concentrating ______

p. Suicidal ideation or attempts ______

q. Oddities of thought, perception, speech or behavior ______

r. Perceptual disturbances ______

s. Time or place disorientation ______

t. Catatonia or grossly disorganized behavior ______

u. Social withdrawal or isolation ______

v. Blunt, flat or inappropriate affect ______

w. Illogical thinking or loosening of associations ______

x. Decreased energy ______

y. Manic syndrome ______

z. Obsessions or compulsions ______

aa. Intrusive recollections of a traumatic experience ______

bb. Persistent irrational fears ______

cc. Generalized persistent anxiety ______

dd. Somatization unexplained by organic disturbance ______

ee. Hostility and irritability ______

ff. Pathological dependence or passivity ______

Other symptoms and remarks: _______________________________________________________

________________________________________________________________________________

___

4. Describe the clinical findings including results of mental status examination which demonstrate the

severity of your patient?s mental impairment and symptoms:

________________________________________________________________________________

_______

________________________________________________________________________________

_______

________________________________________________________________________________

_______

5. Are your patient?s impairments reasonably consistent with the symptoms and functional limitations

described in this evaluation? ______ Yes ______ No

If no, please explain: ____________________________________________________________________

________________________________________________________________________________

_______

6. a. List prescribed medication and dosage Daily Amount Taken

__________________________________ ___________________________

__________________________________ ___________________________

__________________________________ ____________________________

__________________________________ ____________________________

b. Describe any side effects of medications which may have implications for working, e.g.

dizziness, drowsiness, fatigue, lethargy, stomach upset, etc: __________________________________

________________________________________________________________________________

_______

________________________________________________________________________________

_______

7. Does your patient have a low I.Q. or reduced intellectual functioning?

______ Yes ______ No

Please explain (with reference to specific test results): ________________________________________

________________________________________________________________________________

_______

________________________________________________________________________________

_______

8. On the average, how often do you anticipate that your patient?s impairments or treatment would cause

your patient to be absent from work?

___Never ___ Less than once a month ___ About once a month

___ About twice a month ___ About three times a month ___ More than 3 times a month

Independent of any impairment from alcoholism and/or drug addiction, please rate the

individual?s capabilities to perform the following basic mental activities of work on a

regular and continuing basis.

?Regular and continuing basis? means 8 hours a day for 5 days a week or an equivalent work schedule.

No/mild loss No significant loss of ability in the named activity; can sustain

performance for 2/3 or more of an 8-hour workday.

Moderate loss Some loss of ability in the named activity but still can sustain

performance for 1/3 up to 2/3 of an 8-hour workday.

Marked loss substantial loss of ability in the named activity; can sustain

performance only up to 1/3 of an 8-hour workday.

Extreme loss Complete loss of ability in the named activity; can not sustain

performance during an 8-hour workday.

9. Is ability to understand, remember and carry out instructions affected by the impairment?

_____Yes _____No

If ?no?, go to next question. If ?yes?, please check the appropriate block to described the

individual?s ability to perform the following work-related mental activities:

No/mild Moderate Marked Extreme

Loss Loss Loss Loss

a. Remember locations and work-like procedures _______ _______ _______ ______

b. Understand and remember very short,

simple instructions. _______ ________ _______ _______

c. Carry out very short, simple instructions ______ ________ _______ _______

d. Understand and remember detailed instructions ______ ________ ________ ________

e. Carry out detailed instructions _______ ________ ________ _________

f. Maintain attention and concentration

for extended periods, i.e. 2 hour segments _______ ________ ________ ________

g. Maintain regular attendance and be punctual _______ ________ ________ ________

h. Sustain an ordinary routine without special

supervision. _______ ________ ________ ________

i. Deal with stress of semi-skilled and

skilled work _______ ________ ________ ________

j. Work in coordination with or proximity

to others without being unduly distracted _______ ________ ________ ________

k. Make simple work-related decisions. _______ ________ ________ ________

l. Complete a normal workday or workweek

without interruptions from psychologically

based symptoms _______ ________ ________ ________

m. Perform at a consistent pace without an

unreasonable number and length of rest periods _______ ________ ________ ________

10. Is ability to respond appropriately to supervision, coworkers and work pressure in a work-setting

affected by the impairment? If ?no?, go to next question. If ?yes?, please check the appropriate block to

describe the individual?s ability to perform the following work-related mental activities.

______ Yes ______ No

No/Mild Moderate Marked Extreme

Loss Loss Loss Loss

a. Interact appropriately with the public _______ ________ ________ ________

b. Ask simple questions or request assistance. _______ ________ ________ ________

c. Accept instructions and respond appropriately

to criticism from supervisors. _______ ________ ________ ________

d. Get along with coworkers and peers

without unduly distracting them or exhibiting

behavioral extremes. _______ ________ ________ ________

e. Maintain socially appropriate behavior _______ ________ ________ ________

f. Adhere to basic standards of neatness and

cleanliness. _______ ________ ________ ________

g. Respond appropriately to changes in a

routine work setting _______ ________ ________ ________

h. Be aware of normal hazards and take

appropriate precautions _______ ________ ________ ________

i. Travel in unfamiliar places _______ ________ ________ ________

j. Use public transportation _______ ________ ________ ________

k. Set realistic goals or make plans

independently of others _______ ________ ________ ________

11. Indicate to what degree the following functional limitations exist as a result of your patient?s mental impairments.

FUNCTIONAL LIMITATION DEGREE OF LIMITATION

a. Restriction of activities of daily living: None _ Slight __ Moderate __Marked * __ Extreme __

b. Difficulties in maintaining social

functioning: None __ Slight __ Moderate __ Marked ___ Extreme ___

c. Deficiencies of concentration,

persistent or pace resulting in

failure to complete tasks in a

timely manner (in work settings

or elsewhere) Never __ Seldom __ Often __ Frequent ___ Constant ___

d. Episodes of deterioration or

decompensation in work or work-

like settings which cause the

individual to withdraw from that

situation or to experience exacerbation

of signs and symptoms (which may

include deterioration of adaptive

behaviors) Never ___ Once or Twice ___ Repeated ___ Continual ___

*Note: Marked means more than moderate, but less than extreme. A marked limitation may arise when several activities or

functions are impaired or even when only one is impaired, so long as the degree of limitation is such as to seriously

interfere with the ability to function independently, appropriately and effectively.

12 . Can your patient manage benefits in his or her own best interest? ____ Yes _____ No

13. PERIOD OF RESTRICTION: Has the individual?s condition existed and persisted with the restrictions as outlined in

this Medical Source Statement at least since ______________?

____ Yes ____ No

If not, state the first date the patient?s condition existed and persisted with such restrictions.

______________________________

CERTIFICATION

By my signature appended hereto, I attest that I have answered truthfully and accurately to the best of my ability,

each of the questions presented in this Medical Source Statement rating the individual?s capabilities independent of any

impairment from alcoholism and/or drug addiction.

Dated _____________________________

______________________________

Signature

______________________________

Printed Name

______________________________

Address

Thanks Eric, I'm going to do more research on it until now I havent heard of central only obstructive.

I found my sleep study and found something I wanted to ask about. My HR was 115 bpm at some points during sleep, but mostly stayed around 70 bpm, the dr never said I had tachycardia during sleep.

Anyone know if this points to something or is the tachy worse since it during sleep? I've suffered tachy and VT for awhile and have told them I wake up sometimes with my heart racing - meds haven't helped this.

I've fainted since I was 9, but every time I told drs they said unless it was a daily thing they weren't concerned, until I went to a cardiologist last year for heart problems and she sent me to see a dr and have a sleep study done.

I've had sleep problems for as long as i can remember, trouble falling asleep; then I don't go into rem sleep and very seldom do I sleep for more than an hour or two at a time. My sleep study showed I had moderate OSA and I can't tolerate the masks - they make me go into tachycardia and I pass out or get close; which they said was a panic attack even though I never suffered panic attacks until a month later after heart surgery

interesting thought

I wonder how many people are also misdiagnosed with obstructive sleep apnea, who may actually have central sleep apnea.

I know I read this before, but still can't find info on it, so hopefully someone knows the answer.

I went to see a neurologist, but I haven't seen her since I got my blood test back because of an insurance issue, so I'm trying to get all my questions together to ask when I go back.

I was reading the NDRF booklet and on page 23/42 http://www.ndrf.org/NDRF%20Patient%20Handb...ecA_pp17-58.PDF it says the Vagus Nerve controls (most organs) Heart, Stomach, Pancreas, etc.

When I had my bloodwork done, my glucose was normal at 74, but my A1C was high at 5.9. Can the Vagus nerve be the cause of this since I have ANS dysfunction (NCS/OI) ? I thought I had read here that the ANS wasn't related to blood sugar, but now I can't remember what I read; its all confusing....so does the ANS affect the pancreas/insulin/glucose levels?

I have to have an EMG and CT of my spine to see which nerve roots are being affected and how much nerve damage I have. My ana was negative, but the dr said I have 8/11 markers of Lupus, so I'm not sure if she will dx me with it or not yet.

My MCHC was low 31.9 and my EFGR is still 59; the same as 12/2008.

It's funny, I told my husband I feel like a tornado - I just keep whirling away and picking up things as I go along throwing them all in....how many much more of my body can be affected

Thanks in advance

thank you to whoever said Dr Grubb is in your network, I didn't think to check that and have only checked out the major clinics under my health plan - he's in my network and my ded is paid for the year so maybe I can get an appt also

Interviewer at mine was strictly gathering information. They seemed to encourage doing the whole thing on line. I did the interview option because I had a questionaire my doctor filled out I wanted to submit and wasn't sure if that was an option via computer. I didn't ever end up seeing another doctor other than my own either.

Good luck!!

Rebecca

After my cardiologist put me on permanent driving restrictions because I pass out even after heart surgery & implanting a pacemaker/icd, I filed for SSDI about 2 mths ago. I have malignant heart problems, ANS problems, AI problems; possible diabetes, depression, neuropathy and OSA. I had to prove each thing I have is debilitating to the point I can't work and when I do feel like working, I have to have help.

From my understanding, your strongest case is going to come from your personal doctors, so get them to fill out forms for you for everything you have, this will help your case greatly. I still owe my pcp money and he refused to fill out forms for my depression, so they are sending me for an evaluation to one of their doctors of choice - which delays my case until I finish that eval.

I got the link from here on the info section for The Disability Benefits Information Website - there's a section for help with forms and there's a link for a pdf form to fill out from your dr but I can't find it right now maybe someone else will know what I'm talking about?

A tip I did receive was - they will base your case on what their medical team "thinks" a person with your condition can or cannot do, but if your personal physican says you can't or shouldn't do something, they tend to go with that since that dr has treated you, so get a good clear explanation from your dr as why you can or can't do certain things.

another thing was this - if you have to lay down to rest frequently to relieve your symptoms they strongly consider this as a factor because employers won't typically let you rest during the working day

I've gotten some names of disability lawyers already just in case; I've heard some great things about a company called Allsup and by law disability lawyers can only charge a certain amount and have a cap on their fees, so that may be worth looking into if you are or have been denied benefits.

For most of my life I've had major sleep problems, but never really talked to a dr about it. I would sleep about 4 hours, be fine and 1 day a week or so take a 20 min nap. I'm really wondering if that lead to some of my health problems I've had.

5 or 6 years ago I started sleeping less due to bladder problems and getting up 8-10 times a night going to the bathroom, even meds the dr gave me didn't help.

Even now that my younger children are a bit older and sleep through the night, I still don't sleep much. If my sleep is disturbed for some reason and I don't sleep 4 hours straight, then I'm miserable and can barely function during the day, but if I get 4 hours sleep straight, I feel a bit better.

In July when I saw my cardiologist, she asked about my sleep habits and snoring then sent me to a sleep specialist and they did a sleep study and found I have Moderate Sleep Apnea.

I have NCS and OI, along with heart problems.

I have freaked out my fair share of drs, but it's most fun to freak out my oldest children LOL [23 & 24]

my best line to dr's is - don't you have to have a heart to feel a pulse? lol some laugh some just glare at me...

I've wondered how long I've had heart rhythm problems...my brain remembers some things, but not others. I remember fainting as young as 9 years old, and I don't think I had VT back then, but I may have and just not known it; but maybe other HR problems can be connected...they did test me for ARVD and said the results were inconclusive, but I had all the signs & symptoms.

I don't remember major heart problems until I had a virus 13 years ago, so I'm trying to find that connection between fainting, pulse/bp, ANS & heart problems and viruses - I was having pvc's 24/7 [54,000 daily] and had no clue what they were, just thought I was overly stressed.

I'm interested in seeing why others faint and have no pulse/bp also.

Oh Btw Giraffe, I know what you mean about young children - last year while we were moving, I passed out, fell into the wall and hit the tile. My daughter was 5 at the time and she couldn't use my Nextel phone to call my husband - we didnt have the phone installed yet, and I was out about 15 min, which scared the daylights out of me when I came to. Then I was really mad because I hurt my knee and couldnt walk for a few days and had to hire people to move the rest of our stuff.

I have NCS and OI with heart things thrown in.

I passed out, with no palpable pulse and no bp when I had my TTT done. It freaked out the dr doing the test and I had to be wheeled out and no longer allowed to walk; until later that week when I had a pacemaker/icd implanted; after I had an ablation and cardiac cath to make sure there wasn't anything else going on.

I have polymorphic vt's that cause my heart to go into vfib and stop; making me pass out - then I get the *&%$# shocked outta me from my ICD but at least I'm alive...

I haven't found anyone else that did the same thing as me until now

When I went to my pcp and he told me he suspected valve damage, I got with my insurance co and Mayo Clinic here in JX FL.

I was told they are out of network and the cost would be $12,000, which I would have to pay up front. Right now, all of my care; testing & prescriptions are paid 100% in network; since I paid my $3,000 deductible in my first month of testing & treatment.

It's not feasible for us to pay out of network in my situation at the moment; even if it would help me get back to "normal" whatever my normal may be now

I have United Healthcare which is a great ins and I have a great plan, I pay $3,000 out of pocket for my family a year and the rest is 100% covered.

I tried Mayo clinic; but it's is on my out of network benefits and would cost $12,000 extra just to go to them each year, which I can't do

I have NCS and OI [heart stuff thrown in the mix] I said should have been the first sign for me that I was sick; being so fatigued that even after sleep or a nap I'm still tired, when I was used to 4 hrs sleep all my life and I was fine.

all of my blood work was ok though except my sodium - can I get too much B12?

I do know I started taking my children's gummie vitamins and notice I feel somewhat better when I do and they don't upset my stomach since they're geared for children.

I take Midodrine 3x daily and Bisoprolol 1 time daily - so mine are all medicated stats; except for a week I forgot to get my Midodrine script refilled HR stayed between 40 - 50 even with my PM/ICD.

Sitting HR - stays at 60 with my pm

Supine HR - 80 (when I feel bad or my bp is low I'll lay down to make it go higher)

Walking or activity HR - can be 175+ my icd is set for 175 VT & 220 - 225 VF

ahhh now that is very interesting with Autism; MCAD and the misbehaving .... Histamines..

ready for something weird? sometimes my son cries for no apparent reason, we ask different things to try and find out what's wrong; but normally he just sounds a bit stuffy and the dr told me to give hime an antihistamine...within an hour he's feeling better....think there's any connection?

I'm going to ask her about Autism & MCAD and see what she suggests, maybe testing him for it.

I'm glad to read about exercise and ans problems - I have NCS and OI and I thought my problems with exercise was all due to cardiac related issues.

My cardiologist told me not to exercise for now, it's making me worse and causes my heart and ans to do weird things. UGH how do I combat 6k of sodium and fluid retention daily with anything other than exercise... fluids aren't doing it - when I am awake I have something to drink, I drink at least 10-12 20oz water a day - I feel like I'm floating or like I could float the worlds largest cruise ship lol

heck why do I even want to bother with exercise when all it does is make me SICK and tired for days after I try anything. 6 or 8 months ago I was walking/running 5-7 times a week; sometimes more and now I can't even walk on my treadmill.

thanks so much, I really appreciate the info.... looks like I'll be busy awhile

I was recently diagnosed with NCS & OI so far (along with several cardiac related problems) who knows how long I've had this, but I suspect since I was 9.

Until I went to a cardiologist in July, other doctors have told me fainting & other problems were no big deal, so I believed them. She sent me to an EP for an EPS and ablation and he said I needed a TTT; which confirmed NCS & OI.

Im still trying to find a connection to the body pains, twinges etc sometimes stabbing sometimes feels like something crawling in different place, kind of numb but then sometimes tremors like charlie horses but worse...my husband can massage my legs with his palms, but to touch even lightly with a fingertip is excruicating - it started on other places of my body this past week.