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1.) Amy

2.) age: 26

3.)POTS

4.) Diagnosed at age 26

5.) Iowa

6.) Worst: dizziness/ blacking out, tachycardia, very bad chestpain, headache, extreme fatigue

7.) Best: Fatige, mild chest pain, mild headache

8.) new durg I am on Wellbutrin, florinef, mitodrine

9.) Just starting in the POTS world, so just getting started on meds! ( but not had the best luck! beta blokers didn't work well.

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1. Marie

2. Age: 42, symptoms for at least 6 years

3. Dx: Autonomic Neuropathy, Raynaud's, POTS, Asthma, slow message to atria - presently being tested for cause

4. Age at dx.: 40

5. Where you live: Near Milwaukee, WI

6. Symptoms at worst: lightheaded, loss of balance, vision tilts 90% suddenly, feeling of extreme cold in whole body-hands almost always, lack of sweating, so I can overheat easily, but I mosty feel cold, Stomach pain when I eat from GI motility slowing, chest pain

7. Symptoms at best: cold, lightheaded

8. Medications/treatments, etc. that didn't work for you

9. Medications/treatments, etc., that do work for you: Singulair and Zyrtec help just a little for asthma, Norvasc helps blood flow to my extremeties due to Raynaud's, so I now have strength back in my arms. I may begin to take Mestinon for better nerve function if the cardiologist feels it is safe with my atria. The Dr. did not give me a name or cause yet for the slow message to my atria.

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1. Name Sarah

2. Age 34

3. Dx POTS

4. Age at dx. 29

5. Where you live - Worcestershire, UK

6. Symptoms at worst - tachy, inability to stand, dizziness, extreme fatigue, greying out of vision

7. Symptoms at best - occasional tachy, still always tired, still problems standing for long but working part-time

8. Medications/treatments, etc. that didn't work for you - florinef (turned into a halucinating maniac!), atenolol (fatige), propranolol (inc asthma symptoms)

9. Medications/treatments, etc., that do work - Bisoprolol Furmarate (B-blocker, the only one which seems to suit me), midodrine, compression tights (class 2), salt & fluids, keeping cool in summer and getting lots of rest

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name: Tracy

Age: 29

DX: POTS

Age at Dx: 28 In July 05, turned 29 on aug. 12

I live in Ellsworth, OH

Systoms at worst: severe chest and back pains(Just lay in a fetal position and can't move) gasping for air, leg pains,heart racing, very low B/P.

Systoms at best: leg pain, can't stand fast or room starts to spin

I only got dian. still on first try of meds,

Lappressor and Levsin, compression hose, high salt intake, only drink Gatorade or powerade.

I saw Dr Fouad at the Cleveland Clinic

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1. Jennifer

2. 31years

3. POTS, NMS

4. found out about 1 month ago

5. live near Fort Worth, TX

6. at worst: trouble breathing, dizzy, trouble swallowing, heart racing to 170, numbness, neck pain, chest pain, severe chest and neck and head pressure, cannot move because of so much discomfort from symptoms, nausea, need to go to bathroom, not being able to drink or eat anything, feel like I am fading out, sleep apnea, loss of sensation everywhere, reflux during pre syncope, so many I do not want to type them all out

7. at best: nausea, vision problems, neck pain, headache that seems to pound with heartbeat-temporary, these are with compression hoses on and the list could be much longer.

8. Too new for this one.

9. What helps is beta blocker, hoses, ice pack on neck, making sure I eat and drink enough

***Just wanted to say that I researched my symptoms on the internet and tried to tell the drs it was POTS, no one would listen, all thought I was stupid--that is an internet diagnosis. Well, they put me in the hopital and ran all these tests and last one was tilt table--guess what? I bet that dr felt a little funny about telling me I had POTS.

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hi,

new to posting,not good with spelling or computers!

1.mary

2. age 42

3.dx.orthostatic hypotension,depreppion,pvc 4.age 40 doc did not tell me tuntell

5 .ohio

6.at werst. bed redden ,passout at standing,musel pains,brainfrogg,migains,voimeting,chest pain short of breath.right side of body contintle shakes,weight loss ,thirst,hunger..

7.at best days I can do the best I can to ignore how I fell and live with the fellings.

8.can not take beta-blocker, florinef

9.what worths for me ,,,do not know ..enought.. olotof water and salt .praying........................................................................

.......................ohio

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  • 4 weeks later...

1.Pamela 2. 32

3.POTS,OI,systolic murmur,protein S def with inadequate prolongation ao protine (Blood to thick and to fast to clot) PE DVT'S,Allrfies, asthma ,Dyspnea, hypotension,Hypokalemia,Hypovalemia,migraines,labile blood sugars,diverticulitus,chronic const, anxiety

4POTS diag in May 2005 after MI due to all the hypo's..age 32

Sympatamatic forever.

5.NC

6.At worst.. Tachy over 150,dizzy to blacking out when standing, dizzy and tachy at the slightest change of position, dry mouth and thirst, confusion,slurred speech,exhaustion, headache for days w/o any relief,sleepy then bam! asleep! loss of memory, Feeling like I am somewhere over the rainbow w/o red slippers, loss of co-ord,balance,hypersensitivity to all stimuli,can't sleep,BP below 80/60,... chest pain

7.At best .. a little tachy all the time due to meds 100-125bpm, fatigue, achey lgs and arms, new goose bumps for no reason, sudden dizzyness that goes awy and sudden syncope without warning. Dyslexic typing B) inability to concentrate and remember the little things. Fluxuations in body temp.

8.Meds that heven't worked yet.. Florinef weighht and BP went up real fast by 15lbs in 48hrs and bp up to145/60 at second dose,nadolol..dropped BP to 80/40 at check up,lexapro

9.Currently on Metadate to elevate BP and improve concentration and energy. It so far has only raised my BP a little, but has regulated my BP drops to where if they do drop they recover faster. However, it aggrevates other symptoms of POTS

Klor-Con(for hypokalemia), albeuterol,(as needed) and spiriva, Coumadin 15mg-20mg,Xanax supposedli everday 1mg, but using as needed .and I am forgetting something..claritin. Right now it a bad phase and I feel screwed up so .Drinking Gator aid and working on cleaning up my diet.

10.No good doc yet but this site is arming me to help my internist and I get to visit my cardiologist on the 20th. in Matthews NC. Hopefully he will have solutions. Right now I would like a little IV saline and a nap for 20 hours or so.

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1. Rebecca

2. 26

3.Dx- NCS/POTS

4. 25 when dx but have been having problems since july 2003

5. Charlotte North Carolina

6. symptoms at worst- can't get out of bed, high/low bp, blackout, migraines, vomitting all day long, severe chest pain, weakness, can't stand up for more then a few mins, joint and body aches, dizzyness

7. symptoms at best- extreme fatigue, high/low bp, chest pain, achy, chills, feel like going to pass out, weakness, blurry vision, confusion

8. Carbatrol, Dilantan, Depakoke, Atentolol, Imitrex, Propranolol, Midodrine, Florinef, Paxil, Norpace

9. Phenegren, Still on the following Propranolol, Midodrine, Florinef, Paxil, Norpace

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GracefulPrinsess,

Hi! Just red your info. You are in Charlotte? Me too! Would you like to email me at Pskildum@bellsouth .net? We could be neighbors. Who's your doc? Where do you go for treatment? Do you have support people? Any extra support people I can borrow? :lol: Seriously though, right now its just me and my 1.5yr old girl. My husband is off playing army in GA for 3mos. My sis is here sometimes but she is 24, lives and works 30 min away, and the rest of my family/friends are in Stateville where we are from.

I feel excited to know that there is somone in the area that can relate to what I am going through. I hate that we are trying to cope with this/theese disorders, but we aren't alone. Thank God.

Any how please email privately or this way. And anyone else feel free to do the same.

P.S.

Stay away from the new mall. I went last night and I feel like poop still. It is packed, loud (music and the talking) and you have to park forever away. Stores were great and some were totally new to me. I ll go back when it slows down and I feel better.

PAmea

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  • 2 weeks later...

This has been fascinating to read, so I'll add my daughter's info.

Age: 16

DX: age 15 by regular pediatrician with NCS, but re-dx'ed @ Mayo with POTS @ 16

Home: Madison, Wisconsin

Symptoms @ worst: mono-like fatigue/weakness, overwhelming nausea, sleep troubles, some anxiety

Symptoms @ best: decent energy & mild nausea

Meds that didn't work: Propanalol [beta blocker] made her weaker

Meds that work: Florinef, Mitodrine, Zoloft, Zavia

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1.Melissa/Dillon

2.36/12

3.I was first told I had panic disorder, which was later dismissed by a psychiatrist

I was referred to, along with an internist. The internist thought it was thyroid,

pheochromocytoma or Addison's. He then mentioned dysautonomia when my 12-

yr-old son became symptomatic, as well. I have recently moved and am going

through the process of the continued "work-up", which involves the TTT. From

the POTS criteria, my son and I both fit the bill. My current doc has labeled me

as "hypotensive with PVC's and sinus tachycardia". My son is seeing a doc here

for the first time tomorrow. His docs in SC, where we used to live, were worth-

less, but his event monitor revealed sinus arrhythmia, sinus tachycardia, PVC's,

and PAC's. He was also worked up for pheo at first and then thrown the anxiety

crud at him before the docs got the results of his event monitor. We'll see what

happens tomorrow.

4.Since we haven't formally been given a diagnosis, I'll tell you when we had the

onset of symptoms. For me, 33. For my son, 9.

5.Macon, Georgia

6.For me, extremely low BP, tachycardia upon being upright for any length of time,

blurred vision, dizziness, tunnel vision, "out-of body" sensations, shortness of

breath, hyperventilation,heart palps,weak and sore legs, pooling of blood in my

feet,intolerance of heat, cold, and exercise, tingly sensations on my scalp and

lower

legs, hypermotility of bowels, nausea, chronic migraine headaches, eye pain,

visual disturbances (swaying and dots),vertigo,hypersensitivity to meds,

frequent urination. I probably missed a few.

This is why I feel like a hypochondriac when I go see a new doc!!

:)

My son has the same, except he has wildly fluctuating BP, going from extremely

low to extremely high.

7.When I'm consciously keeping myself hydrated and not on my menses or

ovulating, I feel better and like I can exercise or shop. But I never go anywhere

by myself. Nor do I let my son go anywhere without a buddy who is aware of

his situation, lest he has syncope. We always have aggravating heart palps.

8.Antidepressants, esp. SSRI's make me worse and once sent me to the ER.

Nadolol was a toss-up. It made me feel more tired at first, esp.when trying to

exercise. But my system gradually got used to it. It never made my heart

palps completely disappear, but they did diminish. But even on a low dose, I

always worried that my BP would drop more, so I quit taking it.

9.Lots and lots of gatorade, sometimes IV fluids, extra salt on my food, EXERCISE,

klonopin, maxalt for migraines.

My son was given imitrex for migraines, and I asked his former doc if he was

crazy, because of my son's high BP. We're working on finding something for his

migraines and BP fluctuations with the new doc tomorrow, I hope.

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1. Name - KLS

2. Age - 29

3. Dx - POTS (also have MS, Arnold Chiari Malformation, EDS, Celiac Disease, BPPV, Asthma)

4. Age at dx. - 29

5. Where you live - Boston, MA

6. Symptoms at worst - Tachy was up to 150+ - Blood pressure 160/110 at worst

7. Symptoms at best - Normal heart rate and blood pressure was beautiful

8. Medications/treatments, etc. that didn't work for you - Atenolol

9. Medications/treatments, etc., that do work for you - Clonidine (as far as lowering my HR and BP), but had other physical complications from it even though it worked. So far so good on the Mestinon. Gatorade helps.

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  • 2 weeks later...

Name-Ashli Jones

Age-17

Diagnosis-POTS, NCS

Age of Diagnosis-about 14

Where you live-Eugene, OR

Symptoms at best-fatigue, headaches, brain fog/forgetfulness

Symptoms at worst-extreme fatigue, headaches, brain fog/forgetfulness, tachycardia, stomach pains etc.

Medications that didn't work-ProVigil, ProAmatine, Adderall XL

Medications that do work-Adderal XR, Sectral, Levsin, Florinef, Lexapro, Ortho-Tri-Cyclen

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1. Name: Corina Botkin

2. Age: 39 creeping up on the big 40 ;-)

3. Dx: POTS Autonomic Neuropathy, Vetiblular disorder, Gastro Paresis, and now maybe Fibromyalgia

4. Age at dx: 35

5. Where you live: Portland, oregon

6. Symptoms at worst: WOW So many LOL Bad gray outs and some times fall down, wired and shakey feeling, anxiousness, chest pain, shortness of breath and feeling just winded, sharp pain in my stomach and in my chest, inability to concentrate, strares/trances they only last seconds but scarey, freezing or to hot, body pain and ache, freezing hands and feet, dimming vision, Hard time remebering words etc

7. Symptoms at best: I am really not sure. All the symptoms but not as intence.

8. Medications/treatments, etc. that didn't work for you: Zelnorm, nexium, domperidome, Reglan, beta blockers, compazine, phenergan, oxycontin, inhalers, oh and ther is so much more LOL I had bad reactions to all of these and more.

9. Medications/treatments, etc., that do work for you: 1mg xanax up to 3x a day. But normaly limit it to 1 to 2x a day. Prilosec, Zantac, e-mycn, and I have been given florinef. I have just not got the guts up enough to try it yet. I also have been placed on Amitriptyline and have not tried that yet. That is to help with chronic pain and sleep.

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1. Cathy

2. 54

3. Autoimmune dysautonomia with POTS (Feb 2005), colonic inertia, reactive hypoglycemia, etc.

4. 53?

5. north of Chicago

6. can't go there right now. too difficult

7. can shop on level ground for 30-60 minutes if walk slowly and stop lots, sit, etc. Otherwise, sit most of the time. cannot "do" much else because of "exercise" intolerance. limited on what I can eat. temperature intolerant - cannot take baths. emotional intolerant - cannot watch intense movies or laugh for a long time.

8. florinef, midodrine, common vitamins and minerals

9. beta blocker, B12 injections, carrot juice, CoQ10, coffee retention, Oxygen, fluids, salt , vegetable digestive enzymes

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  • 1 month later...

Staci 25

Queens, NY

Diagnosed at 24, First with NCS then POTS after a viral infection

When I was really bad I couldn't get out of bed for days, could not stand upright for literally more than 4 minutes without fainting. Could not drive, work, dizzy, lightheaded, severe migrianes, insomnia

On my good days, I make it to work, can drive locally and even finally go grocery shopping etc..but the fatigue still hits me so terribly sometimes that I am bed ridden all weekend... very frustrated!

Didnt work: pindolol (beat blocker made me passout), compression hose, midrodine (proAmintine), reglan

Seems to be helping a little: Clondine (only at nite, if i take it during the day pressure drops to 75/40!!!), florinef, celexa and salt tablets

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  • 6 months later...

1. Lori

2. 45

3. EDS, POTS, Delta Granule Storage Pool Deficiency (bleeding disorder), Raynauds, Nutcracker Esophagus

4. EDS - 42, POTS - 44 (symptoms since teenager), Raynaud's - 29, DGSPD - 44, esophagus - 44

5. Ohio

6. at worst can not get out of bed or chair, brain fog, severe fatigue, joint pains, muscle spasms in back

7. at best - can forget that I have any issues. It never lasts.

8. what works - sleep, good body mechanics, fluids, eating well, accepting limitations (that's hard),pain meds (tylenol, percocet, flexeril when needed),currently using trazodone for sleep, NTG for Raynaud's and Nutcracker esophagus

9. what has not worked - SSRI's, Welbutrin, Cymbalta, Mestinon,reglan, Prevacid,Nexium,Protonix, Prilosec, Pepcid, beta blockers make Raynaud's worse, can not use ASA or NSAIDS due to bleeding disorder, procardia causes severe tachycardia, higher B/P and headache

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1. Cheryl

2. 45

3. POTS

4. dx - a few months ago, but I think I've had a mild case for most of my life.

5. Mobile, AL

6. Fatigue, depression, pre-syncope, tachycardia, short of breath, twitches, insomnia, sleep too much, brain fog, can't stand too long.

7. Symptoms at best - less of the above

8. Medications/treatments, etc. that didn't work for you - just getting started

9. Medications/treatments, etc., that do work for you - now trying clonidine, florinef, prozac

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1. Name: Karen

2. Age: 40

3. Dx: POTS (June 2006) & Common Variable Immune Deficiency

4. Age at dx: 40

5. Where you live: Cleveland

6. Symptoms at worst: Severe fatigue & malaise

7. Symptoms at best: Some energy

8. Medications/treatments, etc. that didn't work for you: N/A

9. Medications/treatments, etc., that do work for you: Florinef 0.1 mg daily, salt & H2O

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1. Name: Amber

2. Age: 25

3. Dx: Haven't had the full DX yet, still waiting...

4. Age at dx.: may have started at age 12

5. Where you live: Arizona

6. Symptoms at worst: near fainting, very weak, blured vision, dizzy, nausea, couldn't move (felt like I had someone holding me down)

7. Symptoms at best: only mild dizziness with sudden movement

8. Medications/treatments, etc. that didn't work for you: Midodrin & Propanonal (spelling?)

9. Medications/treatments, etc., that do work for you: Toporal XL

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Name: Maryte (Maggie or Maggs)

Age: 47

I live in a small community in Northern Ontario, Canada

Diagnosis: Tachycardia with chest pain (SVT, diffuse ST, palpitations etc) labile hypertension, IBS, bladder problems, migraines, vision and lung problems, Von Willibrand's (aquired), TMJ, Impaired Glucose Intolerance, Impingement of both ulnar nerves, Blood pooling and flushing, Straightened of C-Spine, heat and excercise intolerance......and more

First Symptoms: Twin Pregnancy 22 Years ago ... :)

At worst......flare up...don't want to go there.... :)

At best....tired

Rx that did not work......numerous (multiple med allergies)

Rx that works... Atenolol (just barely) Altace and Hydrocholorozide

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Name ; Ami.

Age; 50 years 5 months!

What is it; As indicated at the bottom of this page .

When started; Tricky this one as I was told that I had A.N.D. when I was in my early teens .

Diagnosed; Tested for assorted conditions over the years since teens and added on Actually DX 2002 A.N.D. by chance when a geriatric consultant tested me on the TT by chance after he heard a conference about me at local hospital .

Place of Res; Plymouth UK.

Symptoms at worst; Bradycardia so bad pain reaches level of 10 /10 causeing lack of oxygen +blackout . Unable to walk with acute stiffness ; hips, legs ,arms, hands and constant pain through out body. Unable to swallow. Acute migraines with loss of vision and constant vomiting . Sweating that drenches all clothes 24/7 loss of water = dehydration = constipation = bowel contractions. Tiredness 10/10 bedridden 24/7 for 3-4 days. Acute face , neck, shoulder pain. loss of appetite.

Symptoms at best; Sweating 6-7 /24. Joint pain ( lower body ) stiffness all joints. bowel contractions. tiredness.

Drugs that work ; see below plus wrist supports, walking stick and various appliance around the house like bath aids, bed lifts and special mattresses etc.

Drugs that are useless;...........you name it I have tried it over the years, compression stocking leave me in pain sweating more, heart drugs act against other drugs I take.

After 35 years of trying new drugs I'm still no better off then I was at the start , except for pain control.

Willows.

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