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1. Josh

2. 17

3. POTS

4. 15

5. St. Paul , Minnesota

6. severe brain FOG, ringing in ears, dizziness, fatigue, elevated HR, trouble sleeping

7. hasn't been any- nothing helps him FEEL better

8. high salt, gatorade, midodrine, inderal, metoprolol, mestinon, zoloft, wellbutrin, provigil.

9. nothing so far he is homebound and can't go to school

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1. Rita

2. 31

3. POTS/Orthostatic Hypotension

4. 31

5. New York, NY (would love to hear from others in the tri-state area)

6. Frequent tachycardia, high HR, low BP, severe dizziness, floor feels like it's tilting when I am walking, fatigue, headache, nausea, vomiting, red/numb hands and feet, confusion, numbness in hands and feet, trouble swalllowing

7. Moderate fatigue, red hands/feet, slow walking speed, floor feels like it's moving up and down when I'm walking

8. atenolol, salt and compression hose

9. Atenolol and florinef are all that I have tried

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Wow, are you kidding?! I have a lot here, but I will try to be brief.

1. Leah

2. 23

3. POTS, NCS, VVSyncope, GI dysmotility, hemiplegic migraines, fibromyalgia/myofascial pain (more there in the autoimmune realm, but no definitive diagnoses as of yet, working on it) and more, but probably all tied to general dysautonomia.

4. 18, but first got terribly ill at 15. Have gradual onset and have had symptoms my whole life.

5.New York, NY (originally from Long Island) Hello from the tri-state area!

6.Not sure anymore, changes with the different 'attacks.' I think my worst symptoms are pain, fatigue and migraines. Pain includes GI pain and distress, severe migraines, leg cramps, terrible neck tightness and pain, and chest pain. I am so so wiped. Also, the memory loss and brain fog are really awful because I am a grad student. oh yes, and INSOMNIA ARGH!

7.the Palpitations suck and they are there everyday. I have grown accustomed to them, but I hate them. I have trouble with muscle spasms. I have constant nausea (doesn't prevent the weight gain right now) and esophageal spasms are a frequent occurence. dizziness and weakness. lots of weird things that add on, those are the most annoying. I get very low potassium sometimes and now I have very low iron and I have weird infections and injuries all the time. They make me mad! GI upsets are frustrating. Woman problems like weird estrogen or progesterone levels interferring plus ovarian cysts. You get the picture. Clamminess is embarassing and awful.

8. tried so many things. First thing was nortryptaline- that one almost killed me, reglan allergy, two calcium channel blockers, a different beta blocker than the one I take, celexa, prozac, zoloft (all three made me deathly ill), mestinon, multiple birth control pills and hormone pills and depo-provera, H-1 and H-2 blockers (antihistamines and acid blockers like zantac), topomax, depakote, etc.

9. I have a pretty good combo now that works quite well when I am not in a bad attack. I had a year and a half of mediocre to decent days. Now, eh..

Neurontin, sectral/acebutolol, potassium, ultram, bextra, zelnorm, protonix, nexium, zanaflex, florinef, allegra, birth control. PRN: percocet, firoricet, zofran, benedryl (nausea), nulev for exophageal spasms. taking folate and vitamin c also.

10. NEW ONE: I am a graduate student studying decorative arts and material culture (museum, art, antiques, history). I am a history geek. What is your deal/ passion?

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  • 1 month later...

1 Vikki

2 I'll be 24 in a few days

3 POTS

4 I was 21 when I was dx'd

4 I live in a small town in southern MN-Twin Lakes

5 my symptoms at best are mild versions of: tiredness (it that a word?),palpatations,mild dizziness, low BP, fast heartbeat,heat intollerance.

6 Symptoms at worst...where do I start? Digestive issues,unbearable dizziness,fatigue,pounding in ears,pressure behind eyes,low BP,nausea,near-syncope,fast heartbeat,anxiety,shortness of breath,heat intollerance,numbness/tingling in left arm,sensitivity to light,cold nose hands and feet,and when symptoms are bad, I notice I am moody.

7 The meds that don't work for me are:varapamil,toporol XL,atenelol

8.Things that have worked for me (though right now my symptoms are bad regardless of what I'm doing): Compression stockings, Midodrine, Gatorade/lots of water,high salt, taking naps when I can. Also knowing that others are going thru the same things I am is a huge help. Knowing that I am not alone is a great help.

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  • 2 months later...

Name: Kristen

Age: 38

DX: POTS, EDS

Age at DX: Diagnosed with a neurocardiogenic problem at 21, definitive diagnosis at 36

(However, I was born with POTS and EDS)

I live in Cleveland, OH

Worst symptoms: the worst has probably been my heart stopping for a period of time, frequent fainting, wide variations of heart rate and bp ranging from way too slow to way too fast, sweating, shaking, chest pain, migraines, visual disturbances, GI problems, severe brain fog, inability to stand up, EXTREME fatigue, electrolyte imbalance, night sweats

At best I can stand up and walk around and function pretty well, but always with major fatigue, my bp tends to be low...at best 90/60...often more like 80/40,

There have been so many meds I've tried (at least 100 or so)...inderal, florinef, digoxin, lexapro, adderall, wellbutrin, midodrine, etc, etc,

I am now on provigil, magox 400, and cerefolin. Dr. Grubb would like for me to try Procrit, but I can't afford it and my insurance won't cover it.

Kristen

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1. Name: Laura

2. Age: 28

3. Dx: POTS

4. Age at dx: 28

5. Where you live: Alberta, Canada

6. Symptoms at worst: feeling faint, dizzy, nauseated, tremors, sweating, headache, chest pain, unable to stand, vertigo, HR from 115-180 bpm on standing, extremely tired, numbness to hands and feet, bladder problems (retention).

7. Symptoms at best: Same as above but to lesser degree. Able to function better.

8. Medications/treatments, etc. that didn't work for you: Beta-blockers- no decrease to heart rate, increased symptoms. Calcium channel blockers- Extreme increase in symptoms.

9. Medications/treatments, etc., that do work for you: I am currently trialing Florinef- was started on 0.1mg and now have been increased to 0.2mg YUCK! <_< Seems to be controlling my heart rate a little better, but I am not feeling improvement otherwise!

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1. Caitlin

2. 20

3. post viral dysautonomia, small and large nerve fiber neuropathy, gastroparesis

4. 16

5. Connecticut

6. bedridden, tachycardia(180-250 bpm), bradycardia (30-40 bpm), low blood pressure (50/30), fainting, vomiting, dizziness, bone pain, migraines, neuropathy pain, brain fog, blood pooling, fatigue, chest pain, mottling

7. same as above but not as severe, or not all at the same time

8. SSRI's, calcium channel blockers ( caused tachycardia and fainting), physical therapy (made dysatuonomia worse)

9. atenolol, midodrine, reglan, zofran, miralax, prevacid, ultracet, midrin, (sorry can't think of all my meds - brain fog!)

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1. Name: Janet

2. Age: 30 (31 in March)

3. Dx: POTS/NCS due to EDS III

4. Age at dx: 28

5. Where you live: Why, Texas of course!

6. Symptoms at worst: feeling faint, dizzy, nauseated, tremors, sweating, headache, chest pain, unable to stand, vertigo, HR from 115-180 bpm on standing, extremely tired, numbness to hands and arms, bladder problems (retention). (I swiped this from Laura but it's pretty accurate)

7. Symptoms at best: Same as above but to lesser degree. Able to function better.

8. Medications/treatments, etc. that didn't work for you: Florinef, beta blockers worked but I was allergic

9. Medications/treatments, etc., that do work for you: Midodrine, but only slightly. Catapres (Clonidine patch) seems to work the best for me. High salt and low sugar diet help immensely. I should note that I am not on Catapres all the time. I hate taking anything on a daily basis, even in patch form. My symptoms wax and wane, and when I have a flare-up, I start with the Catapres for a few months, then stop until they get bad again. Most of the time I am pretty functional and I hold down a full-time job and normal life. I just have limitations that I'm aware of.

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Hi, My name is Patti, but it's my daughter Chrissy that has POTS, here's her info:

1. Chrissy

2. 19 yrs. old

3. Dx in 2001 with POTS after a bout of bronchitis. Missed her entire sophomore year of high school and was home schooled by a tutor that year. Went to school part-time in her juinor year, went full time in her senior year and is now a full-time college student. When she first became ill in Oct. 2001, she couldn't walk unassisted, take a shower or go to the restroom. :) After seeing Drs. at the Cleveland Clinic and University Hospitals still wasn't doing very well until we went to see Dr. Grubb, he changed her medication and she slowly began getting somewhat back to 'normal'.

4. 16 yrs. old

5. Chardon, OH

6. Brain fog, dizziness, fatigue, light headed. Terrible time in the mornings still. Has all afternoon classes. Extreme burning in her eyes every morning--can't wait to get Lasik surgery when she's old enough!Nausea. Very symtomatic in the heat, indoor or outdoor.

7. In the afternoon and evening she functions the best. Loves the cold weather.

8. Reglan--ER visit for us, she got a distonic reaction from it. Beta-blocker--made her feel worse, anti-depressants, also made her feel worse. Can't remember all the other meds that they had her on.

9. Florinef--only med she's on right now and seems to help the most.

Patti

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1. Sara

2. 16 on April 4th

3. Pots, ncs, ist

4. 15

5. Maryland

6. severe hypotension, nausea, dizzyness, migranes, Tachycardia, fatigue, brain

fog, heat rushes, chest pain, shortness of breath, loss of hearing, severe vision

problems, shooting pain, numbness and tingling

7. all of the above just not as bad

8. inderal, pindolol (or something like that) both beta blockers

9. just Zofran for nausea

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1. Kristin

2. 17 (18 on June 29th!! yay!! :huh: )

3. POTS

4. 16

5. Wisconsin

6. I don't have any of the bad symptoms anymore, but when I did: episodic paralysis, numbness, tingling, severe pain, shooting pain, debilitating fatigue, tachycardia, hot flashes, excessive sweating, orthostatic intolerance, excessive urination, body temperature fluctuations (dramatic), memory problems, comprehension difficulties, diarrhea, and a bunch of other odd symptoms that I can't think of at the moment.

7. Now, I just struggle with building up my endurance again. Occassionally, I have difficulties with my body temperature (I have a hard time in the summer) and fatigue.

8. Any and all drugs.

9. Nutritional supplements. My mother is a nutritionist who treats dysautonomia (convenient for me!)

10. My passions are politics, government, and writing. I am a political science major and am active in my county political party (I won't mention which one!) and college party club.

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OK, I've been putting this off because of lack of energy and cognitive difficulties but I'm feeling better so here goes.

1. Name - Stephanie

2. Age - 39

3. Diagnosis - POTS/Dysautonomia/CFS/NCS/EDS III

4. Age at diagnosis - 36

5. Where you live - Oregon was born in Ohio

6. Symptoms at worst - (This is going to be long!) Severe fatigue and complete exhaustion, tachycardia, severe hypotension, numbness & tingling in my upper and lower extremities, constant muscle spasms in my neck and now my lower back, intense joint, muscle & bone pain, migraines, visual disturbances, severe cognitive difficulties, slurred speech, constantly cold, unable to tell if I?m hungry or not, dizziness, insomnia, tinnitis, severe tremors & nausea, GERD, arrhythmias, mood swings, mild rash, intense itching, easily over stimulated, Not sure anymore if it?s SOB or just starved for Oxygen (I wake up in the middle of the night like this sometimes) OK think I?ve over done all my symptoms for the past 3 years J

7. Symptoms at best ? Just mildly or easily fatigued, cognitive difficulties

8. Medications/treatments, etc. that didn't work for you ? Midodrine, Magnesium, Phenergan, Lexapro, Propranol and some others

9. Medications/treatments, etc., that do work for you ? Betaxol, Neurontin, Florinef, Epogen injections, Pepcid, Zoloft, Zofran, Synthroid, IV Iron, Extra Vitamins, Imitrex

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Denise

40

POTS, cronic migranes, cysts on spine, pitutary tumor

diagnoised, finally, in July of 2004

I live in Georgia

Symptoms at worst...extremely low BP, confusion, poor hand eye coordination, inability to walk without passing out, extreme pain and nausea, tachicardia, numbness and tingling in right side extremities.

Symptoms at best...able to function and do light housework, play my piano and get on the computer without loosing my train of thought and without to much pain. Able to be upright with fearing falling back down.

Meds that didn't work...the list is to long...no meds for migranes, extremely high tolerance for pain meds, beta blockers don't effect my tach.

Meds that work..Midordine helps some, zanaflex, phenegran, nubaine, sodium tablets, protonix, singular.

This board is very helpful to me. Lifting my spirits and knowing I'm not alone has been a great help to me!

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1. Angela

2. 21

3. POTS (tentative) -- possibly POHS

4. 20

5. NJ (with my parents) -- I was living in NYC until the POTS got too bad

6. Symptoms at worst:

~ Unable to move (too fatigued to move my limbs)

~ migraine headache, sensitivity to light and sound

~ fainting

~ cognitive impairment (brain fog, trouble remembering things, can't follow a conversation, can't think of the words that I want to say, thoughts get jumbled up)

~ drop in BP upon standing (20+ pts)

~ BP: about 80/50, HR: 37

~ feel extremely cold (what would I do without my electric blanket? :rolleyes:

~ insomnia

~ nausea

~ puffy feeling after eating a regular size meal (and I have small meals)

~ Difficulty falling asleep, intermittent sleep, unrefreshing sleep

~ sharp chest pains, difficulty breathing

~ racing heart >110, arrhythmia

~ clamminess

~ greyed vision

~ feel behind time (as if I'm standing still in a tunnel and everything is passing me by)

7. Symptoms at best:

~ can walk 1/2 mile before collapsing exhausted

~ lightheadedness, near fainting

~ BP: 90/60, HR: 70

~ tremendous fatigue (can sit up for about 30 minutes)

~ can engage in intelligent and articulate conversation

~ only feel a little chilly wearing shirt, wool sweater and socks, jeans, down slippers

~ drop in BP upon standing (20+ pts)

~ trouble falling asleep or intermittent sleep

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

Midodrine, Florinef (only helped a little initially, but has since only given me a constant migraine-like headache)

*never tried a BB -- doctors were nervous about starting me on one because my HR was so low

*stockings were not deemed helpful

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

I function better on a high sodium diet and frequent fluid intake

Other than that, we're all out of ideas

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  • 3 weeks later...

1. Name: Gena

2. Age: 36

3. Dx: POTS / Dysautonomia

4. Age at dx: 36

5. Where you live: Northwest Florida

6. Symptoms at worst: extreme hypotension, dizzness, nauseau, tachycardia, arrythmias, headache, chest pain, unable to stand, frequent uriniation, fatigue, insomnia, bowel problems, muscle twitching, panic attacks, tremors, hot and cold flashes, autonomic storms, get stressed easily, (I ALMOST forgot to add MAJOR BRAIN FOG!) ;)

7. Symptoms at best: chest pain, forceful heartbeats, low BP, still have to use a wheelchair to go to the bathroom in the middle of the night. Periods of insomnia. Am still able to exercise daily, but HR gets elevated quickly. Can function fairly normally on a daily basis. Symptoms are worse at night.

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

9. Medications/treatments, etc., that do work for you: Klonopin occasionally before bed, licorice root, liquids, salt, exercise, proper nutrition, keeping my faith and this forum! :P

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1. Name: Allison

2. Age: 37

3. DX: POTS

4. Age at DX: 37

5. Where you live: Hawai'i

6. Symptoms at worst: blackouts and near blackouts, extreme dizziness, nausea, profuse sweating, fast h.r., palpitations, insomina, GI problems, fatigue, exercise intolerance, memory problems, visual disturbances, tinnitus, s.o.b, numbness in hands and feet, excessive urination, heat intolerance, chest pains, unable to function at work

7. Symptoms at best: insomnia maybe only twice a week and can function fairly well

8. Medications/treatments that did not work: Newly diagnosed so am just starting a treatment/medication regimen

9. Medications/treatments that did work: As of 2/2005 I have been on Midodrine for two weeks. I feel a lot peppier, but I am also getting more palpitations and will have to be re-evaluated. Also take Atenolol for adrenalin sensitivity and this seems to lessen the frequency of tachy episodes.

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  • 1 month later...

Dawn

49

POTS (Hyperadrenergic) orthostatic intolerance, mild cardio-vagal failure

Thnk I've had it all my life, diagnosed at age 39

Wisconsin

Worst: Syncope, graying out, low BP, tachycardia, sometimes brdycardia, arrhythmia, ANXIETY, sweaty cold feet and hands, nausea, slow digestive system, headache, fatigue, diarrhea, vomitiing, intolerance to hot weather. Exercise intolerance. Flushing, air hunger, weight loss.

Best: I actually get dressed. Am able to shower while sitting.

Meds: Inderal 10mg 3-4 times a day, Xanax 0.5mg 2-4 times a day, Klonopin 1mg at beditime, Zantac 150mg at bedtime, 75 mg in am.

Things that help: Knee high compression hose, quart of gatorade daily, 2 quarts of water, salt (I eat alot of big olives). Lay with feet up

Things I've tried without success Florinef, 5 different SSRI's, midodrine.

Stress really makes mysymptoms worse. :)

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  • 3 months later...

Hi my name's Becky i'm 23 i was diagnosed with vasovagal syncope and POTS a week before my 23rd birthday.

I live in North Wales.

My worst symptoms, how many pages do i get? sounding similar to everyone else, high HR, low BP, dizziness, vertigo(?), palpitations, bowel problems, sweating, chest pain, shakiness, Can't seem to eat carbohydrates anymore!, anxiety and depression.

on good days i only notice my fast heart beat and i'm a bit dippy, keep doing stupid things like putting my hand in the oven!

I'm on Florinef and paroxetine, which seem to be ok, although i have really horrid side effects from the florinef, Lactating being one of them, but i keep being told to get on with it, my GP doesn't even know what pots is!! :)

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1. KathyP :)

2. 39

3. MVP/Dysautonomia, Inappropriate Sinus Tachycardia, Vasovagal Depressor Syndrome, Severe Panic Disorder, Depression.

4. Formally diagnosed at age 39, but have been living with symptoms all my life, which have been gradually getting worse over time.

5. Oregon, Ohio

6. Symptoms at worst: HIGH ANXIETY Palpitations that throw me into severe panic attacks. Dizziness; Homebound, terrified to drive or go anywhere. Agoraphobia Extreme depression and fatigue. Tachycardia and weakness in arms and legs. Feeling of unreality. Exercise intolerance. Over stimulation of the senses.

7. Symptoms at best: Tire easily, somewhat off balance. When I am at my best I tend to over due and pay for it the next day at my worst. When my tachycardia flares up I can control it. This is how I know I am at my best. Mild anxiety

8. Meds/Treatments that didn't work: Zoloft, Paxil, Celexa, Buspar, Effexor, Florinef, Metformin and Synthroid. Screaming and cursing. Feeling sorry for myself and praying that this all disappears.

9. Meds/Treatments that did work: Xanax, Toprol XL - 25mg per day, increased salt intake, DRINK DRINK DRINK, green olives, getting as much sleep as I can, walk and exercise as much as possible, keep cool, doing things spur of the moment instead of sitting and thinking about the negatives of it, and most importantly LIVE for my kids, husband and myself.

(This is a great topic tread!!)

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1. Megan M.

2. Age 21 (22 in 1 week)

3. Dx-POTS, GERD, CFIDS, neurocardiogenic presyncope, IBS

4. Age at Dx- 21 (4 months ago)

5. Richmond, VA (Go to school in Boulder, CO)

6. Severe dizziness, blurred vision, hypovolemia w/ diabetes insipidus, racing heart, frequent heartburn, diarrhea/bloating, extreme fatigue, chronic cough, heat and diaphoresis, exercise intolerance, nausea, headache, trembling, weakness, muscle spasms, chills, umm.. etc.

7. mild dizziness, heat spells/ diaphoresis, exercise intolerance, bloating/diarrhea, chills, restless legs, fatigue, ADD

8. haven't tried too many meds YET- Florinef definitely didn't work, Toprol works in some ways and makes me worse in other ways, no otc meds help the IBS, nor do any diet tricks so far, anti-nausea wristbands do not work

9. Protonix REALLY works (for now at least), Midodrine helps a little, salt, water, and rest help, massages help the stiff/sore neck, compression hose helps a little, distractions help a little!

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I've been here a few months but never answered these questions

Dayna

age: 28

POTS-Autonomic Neuropathy, gastroparesis

dx: 27

Milwaukee , Wi

Symptoms at worst: Nausea, Migraine, Depression, Anxiety, Heat intolerance, fatigue, blurred vision

Symptoms at best: mild headache, mild nausea.

didn't work: Reglan, Protonix,Compazine

works: Aciphex,-as needed Phenegan, relpax, xanax .25mg

Haven't tried any meds for POTS yet.

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1. Linda

2. 23

3. POTS, Gerd, IBS, diabetes, and resticitive lung disease

4. I was diagnosed with pots when I was 20, but have lived with pots to some degree all my life.

5. I live In Erie Pa

6. when I am at my worst.. I am bedridden, for days or months at a time.. severe fatigue, nausea, diarrhea, constipation (going from diarrhea to unable to move bowels), severe migraines, shortness of breath, tachycardia, High/Low BP, visual disturbances ( floaters.. blurred vision), pressure behind the eye and in top and back of head, difficulty swallowing, syncope, blacking out, light sensitivity.. vomitting... I may have forgotten a few things..LOL :rolleyes: oh yeah dizzy lightheaded.. feeling weird..oh and feeling like i am going to heat up and combust from the inside out!! nigth sweats, cold hands feet..insomnia cycles

7. at best I am slightly nauseated, mild visual disterbances, no syncope, just feeling of syncope..light sensitivity..

8. I have been on alot of meds.. Proamatine did not work.. it made me feel so horrible..

9. what does HELP.. lots of gatorade.. green olives.. water.. lots of salt lots of sleep.. staying away from bubbly pop.. and starch carbohydrates.... sunglass for light sensitvity :lol: .. air conditioning of course!

and right now Mestinon and propranolol, at higher doses seems to help alittle bit... and of course my ambien so I can sleep at night

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Janine

Im 39

DX: NMH, POTS

Sympotms bad at 35, worked up for everything, pheo, gastric carcinoid, seizures, etc.. DX with NMH and POTS this year.

I live on top of a mountain in Wester North Carolina USA

Worst symptoms are "episodes" lasting about an hour, chest pain, nausea, sweaty, feeling of impending doom, headache, stomach cramps, vomiting, diarrhea, confusion. Ending with complete exhaustion.

Symptoms at best: I have constant nausea and leg cramps, Im loosing weight, take 2 bites then Im full. Very tired most of the time, cant take a hot shower or go out in heat. Daily dizziness and my memory is foggy, cont concentrate.

Meds that didnt work, phenergan, zofran, compazine, Toprol XL, Wellbutrin, Miodrine, reglan, Im sure there are more cant think of them.

Meds that work: Inderal LA, Lexapro, Synthroid, Florinef, Klonopin, Valium, Marinol, Nexium, Liquid mineral supplement, B complex and a multi vitamin,

My big thing is anxiety control, yoga, meditating, not freaking out during and episode. And keeping my mind active by playing fast card games online and doing research online POTS related.

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  • 1 month later...

1. Name: Lisa

2. Age: 32

3. Dx: POTS, Addison's Disease, RSD

4. Age at dx.: 31

5. Where you live: Mankato, MN

6. Symptoms at worst: Dizziness, Feeling as if I am going to pass out, nausea, racing heart, grayed or no vision, fatigue, insomnia, sweating, extreme cold/hot, low BP, unable to eat

7. Symptoms at best: I didn't know there was a best time :) I am having a hard time finding that right now.

8. Medications/treatments, etc. that didn't work for you: Honestly I feel as if I have tired TONS of meds (you should see my medicine cabinet) - Celebrex (ended up in the ER)

9. Medications/treatments, etc., that do work for you: Nadolol, Midodrine, Lamictal, Prednisone, Methadone, Mobic, Ativan, Ambien, Zofran, Addrall, Protonix, Bextra

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