Who, what, where, when, and why?

[jdqm]

1. Name: Joy Quinn-Mavredakis

2. Age: 32 (until next week)

3. Dx: vasovagal/vasodepressor syncope

4. Age at dx.: 29

5. Where you live: Springfield Massachusetts

6. Symptoms at worst:(current) fainting multiple times a day, everywhere! In a chair, standing, moving around, not moving, dizzy constantly, vertigo(sp)

7. Symptoms at best: asymptomatic for 18 months last year until a car accident 2/13/06

8. Medications/treatments, etc. that didn't work for you: my first try of midodrine i had an aparent allergic reacton on the first dose and landed in the ER

9. Medications/treatments, etc., that do work for you: i have been off my pharmacopia (10 of them for all the various symptoms) of drugs for 4 months, and i started te midodrine again without an adverse reaction 4 days ago. since that i have had many pre-sympacal episodes but only 2 true faints, and was able to recover from them much faster. i was talking within 5 minutes instead of 20, off the floor within 10 minutes on my own power with balance from others instead of being picked up with brute force. and i was able to continue on normally within an hour instead of needing many hours with my feet up, and days of recovery from the fatigue. i am also using a manual wheelchair 90% of the time i am not laying down. i am using it while i am out and at home.

things i want to try: i have a Rx for the stockings, i am waiting for them to arrive.

Joy

[jhjd]

1) Jamie

2) 25

3) POTS, but still being confirmed- d'xd by RE, but going to see specialist for confirmation. Before that it was severe PCOS, aggrevated by only having 1 ovary. Had surgery and confirmed massive amounts of cysts- scraped out and treatment applied. Told that most of symptoms (fatigue, light headed, fever, etc.) were due to hormone imbalances. Finally referred to excellent RE who said that my hormone levels, with the exception of immediately post-surgery, were fine and that I didn't fit PCOS 'profile.' Sent me off for echo, additional testing. Apparently nobody thought to check hormone levels before blaming them for symptoms.

4) 24- symptoms going on since 18.

5) Montgomery, Al.

6) Fatigue, brain fog, bouncing around temp. (from 97 to 99 in an hour, then up past 100, then down to 96.5, while I shiver and sweat), nauseua, lightheadness to near-syncope (but have only fainted once), chest tightness, muscle aches.

7) Basically normal on good days provided I've gotten enough sleep, drink enough fluid, and don't get up too fast.

8) not tried pots-specific meds yet, as RE didn't feel comfortable with prescribing

9) lifestyle stuff you all know about, Lexapro.

[ellepee]

1. Elle

2. Age - 26

3. Dx - Autonomic Dysfunction, POTS, small fiber neuropathy, possible MS

4. Age at Dx - 24

5. Boston

6. Symptoms at worst: Constant Dizziness, nausea and vomiting, dehydrated, urinate frequently, numb and tingliness, burning feet, unable to stand

7. Symptoms at best: dizzy and nauseous (without vomiting!) - although I don't really have any good moments

8. Medications/treatments, etc. that didn't work for you - so many....IV steroids, vestibular rehab, I've tried so many medications..

9. Medications/treatments, etc., that do work for you - I wouldn't necessarily say they work but I'm taking salt tablets, midodrine, zofran, ativan

[dano2718]

1. Name: Dan

2. Age: 32

3. Dx: POTS

4. Age at dx. : 31

5. Where you live: AL

6. Symptoms at worst: FATIGUE, brain fog, near syncope, constipation, low appetite, night sweating, nocturnal dyspnea and hypotension, palpitations, excessive sweating, weight loss, muscle aches, insomnia

7. Symptoms at best: Feel almost great... for a while!

8. Medications/treatments, etc. that didn't work for you: anti-depressants (make me manic, feel wierd)

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

[MNsue]

1. Rhonda

2. Age - 40

3. Dx - POTS 2006, Neuropathy 2006, Hashimostos 2001, Vitiliago 2005, Asthma 1997, Chronic Fatigue - 1993

4. Age at Dx - 39 Had POTS sympotms in 2005, went away after steroid treatment -MD's are still trying to figure that one out. I had 3 years of feeling great with prednesone given once every 6 months.

5. St. Paul, MN area

6. Symptoms at worst: Can't get off the couch. very weak. Not enough strength in left leg to walk up stairs. Tachy all night and day. nauseous constipation

7. Symptoms at best: 1 year ago I was normal. Since November, Normal is more fatigue, and tachy at night.

8. Medications/treatments, etc. Beta Blockers -all kinds, and Imuran -Made me very sick

9. Medications/treatments: Midodrine- helps me function during the day. Clozenpan helps the tacy at night. Working with an immunologist to treat autoimmune issues. So far the IV steroids will hold me for 3 weeks, then my left side starts to get weak again.

[stellakitty]

1. Name: Alexa (although sometimes my mom Angie posts under this name as well)

2. Age: 17

3. Dx: POTS, Chiari I, EDS III

4. Age at dx.: POTS (age 14), Chiari (age 16), EDS III (age 15)

5. Where you live: Morrison Colorado

6. Symptoms at worst: constant fainting (even when laying down), severe headache/pressure (in the back of head, up left side of face, in ears, behind eyes), nausea/vomitting, extreme fatigue, random pains, consitpation, extremely low bp (even ER can't read it), tachy/bradycardia, tremors, seizures, must put seat in the car all the way back with my feet on the dashboard, hypoxia (use of oxygen 24/7 otherewise O2 levels drop, and I become completey unresponsive or confused depending on how low it drops) (up until recently before my decompression this was the norm.)

7. Symptoms at best: fatigue, dizziness, constipation, joint pain, brain fog, alot of the above sypmtoms to a much lesser degree. At my best two years ago I was functional... I didn't require a wheel chair, oxygen. If you saw me walking down the halls at school you'd never know that I was sick.

8. Medications/treatments, etc. that didn't work for you: Florinef, Mestinon, Procrit, ending up under 72 hr lockdown for a "suicide attempt" (This is why we need to educate docs!! I'm smart enough to know that a 3" paring knife in my RUQ isn't going to kill me... My Vena Cava is on the other side! But it just isn't possible that I had a hypoxia attack, or fainted on it now is it? I was even tachycardic and hypoxic when my mom took me to the ER, told them that was the norm, and they said that was impossible!)

9. Medications/treatments, etc., that do work for you: chiari decompression (I don't recommend it unless you have run out of options... It hurt like &*^^. Plus due to the EDS my wound didn't heal and I ended up with meningitis and a SEVERE staph infection that has earned me 6 wks of Nafcillin through a PICC. On the plus side I can actually sit up, and my O2 sats have remained above 90% ... It had been over a year since I was able to sit up and get away without O2!) Drug wise: Neurontin (helps with seizures, tremors, AND pain... It's been a miracle drug!), domperidone (motilium), toporol xl, provigil, depo (for probable endometreosis), celebrex, stadol nasel spray (for migranes), various prn meds for sporadic sx.

[mtkim]

1. Kim.

2. Age 44

3. POTS, SVT, inappropriate sinus tachycardia.

4. Diagnosed with SVT three years ago. Diagnosed with POTS 3 months ago. Inappropriate sinus tachycardia a month ago. IBS and B-12 deficiency for years.

5. Ohio.

6. Rapid heart rate, PVCs and junctional beats like crazy, facial flushing, sweating and chills, stinging creepy crawly sensation in the back of my head, unbelievable fatigue, loss of appetite, any heat at all seems to set my heart off including eating hot food, thirst, a sensation that I am just going to die, can't watch television, look at a computer, read, or do anything that over stimulates me. Believe it or not when I am really bad I can't stand the taste of salt on anything.

7. On good days I am able to take a shower if someone is in the house with me, I can work a 6 hour day in the comfort of my dining room as a medical transcriptionist, but don't count on me doing anything else for the rest of the day, can cook small meals if I don't have to stand for any length of time and I havn't worked that day, can watch some television (watching TV seems to give me a kind of motion sickness), can actually drive about 1/4 of a mile and have coffee with friends. I do what I can on really good days and accept when I am having bad days and don't try to push it.

8. Failed PE study, calcium channel blockers made me unbelievably sick, Lexapro, Paxil, and Cymbalta. I am completely intolerant of anything for pain, except Tylenol, but have systemic reactions to morphine (put in spinal when I had a c-section) and codeine. My doctor always thinks its funny when she prescribes me something new, because she gives me what she calls "baby doses" of everything and works the dosage up as we go.

9. Atenolol 25 mg twice a day, Xanax 0.25 mg twice a day (sometimes three), B-12 injections bi-monthly, Lasix 20 mg a day (legs swell like crazy in the heat), Zoloft 50 mg at bedtime, and just good old Tylenol. I just came off of Tambocor after taking it for 3 1/2 years.

[ksibert676]

BUMP.

I think the intent of this survey was to keep all answers short and sweet. It makes it easier to read the specifics of everyone's posting. I have to admit I have a tendency not to read long winded replies unless it's a personal e-mail. It's great to hear your stories and problems you've endured but I would highly recommend submitting 'your story' to the board. I'm in the process of writing mine.

Also, it's super easy to 'select all' then paste the initial post to reply to the questions.

[Guest dionna]

1. Name Sarah

2. Age 20

3. Dx POTS, NCS, IBS, NMH, migraines

4. Age at dx. 18, 19, 20

5. Where you live: currently between SC and DC- traveling back and forth all the time.

6. Symptoms at worst

headaches, lots of fainting, lightheadedness, dizziness, pallar, flushing, electricity feeling, numbness, tingling, twitching, jerking, nausea, upset stomach, chest pains, fast hr, low bp, fatigue, weakness- basically im in bed or on the toilet.

7. Symptoms at best just the chest pains, headaches, and tired- always tachy and low bp but i am used to that now. so lightheaded. always twitching just less.

8. Medications/treatments, etc. that didn't work for you- midodrine, propanonal, mestinon, florinef

9. Medications/treatments, etc., that do work for you- neurotin, motrin (otherwise mind over matter)

[unsolvedheart]

1. Cathy (newbie to the forum as of today!)

2. 27

3. NCS

4. 22

5. Chicago

6. Before I was diagnosed, I started passing out randomly. It got to the point where I couldn't walk a block without fainting. After a variety of tests, I was diagnosed with NCS. Only problem now is that I seem to be developing an arrythmia to keep the NCS company.

7. Functional, for the most part. Now that I'm on meds, I can actually do most things. Amusement parks, crowded nightclubs and shopping for extended periods (read: more than ten minutes) are a thing of the past. Standing up in church is a lost cause, too. Generally the mornings are the worst for me. Warm, humid weather does me in as well.

8. N/A.

9. Atenolol (beta-blocker.) This has me semi-functional. I had to change my lifestyle quite a bit, but this made things a lot better. I can at least walk now without crashing into the ground.

It's so nice to see so many people here! It can be very lonely when no one knows what you're talking about. "Neurocardio what??"

[john redman]

Hi Deanna,

What is the rationale for taking octreotide injections. It's kind of a hormone like somatostatin if I am reading up on it correctly.

My best, John

1. Deanna

2.30

3.POTS, NCS with OI

4.diagnosed about 6 months ago

5.Summersville WV

6.worst- bedridden,extreme nausea,headache/migraine,depression,black -outs,difficulty with concentration

7.best- fatigue& mild dizziness

8.meds that dont help me-5 different beta-blockers ,florinef ,midodrine(by itself)

9. octreotide injections , IV fluids , letting go of my guilt over being ill to begin with ,learning my limits and sticking to them ,zoloft for depression ,lots of salt and lots of water , limit sugar and chocolate( not easy I'm addicted!)

[kholdefer]

1. Kady Holdefer

2. 24

3. POTS, Tourette Syndrome

4. 23

5. Lincoln, NE

6. Extreme fatigue, inability to walk, falling, excessive heart rate, low blood pressure, dizziness, bad leg pain, thirst/urination, headache, memory loss, inability to concntrate, flushing, hot flashes, chills, fever

7. Fatigue, some falling, high heart rate, low blood pressure, leg pain, urination (basically, same symptms, just not to the extreme, livable)

8. Stockings made me too hot, didn't really notice a difference; breathing exercises made me fall asleep

9. Midodrine 5 mg 3x daily, swimming daily (really helped when I could, no gravity pulling my blood down), Pilates, Salt, Tons of water, leg exercises (these things have really been helping until recently)

[cardiactec]

1. Angela

2. 24

3. POTS, IST, MVP, PFO, GASTROPARESIS

4. diagnosed with POTS,MVP, AND PFO at 19. Gatroparesis diagnosis two months ago

5. I live in Maine

6. symptoms are variable in intensity, daily - shaky extremeties, weakness, nausea, sweaty

7. symptoms at best when i'm not standing still or in hot/warm environments

8. meds that didnt work, heh, basically everything of what all of you are on: florinef, midodrine, clonodine, inderal, metoprolol, atenolol

9. i am only taking a beta, sotalol, 160mg's daily...it works to keep my rates around 120 standing. before meds rates were 200+. i suspect something beyond POTS since none of the "pressor" or pressure raiser/sustainer meds did anything to help me....nor did/does salt loading/fluid loading.

hmm, that's about it! )

WELCOME!

[ode_to_fantasy]

1. Sara

2. 23

3. POTS, NCS, IBS, Neuropathy

4. 21 (have had since 14)

5. Gainesville, Florida

6. I get really hot/flushed, can't think, bp goes down, I pass out, throw up, get chest pain, body pain, dehydrated, weak, extreme vertigo, diahrea, migranes, hallucinations, breathing problems.

7. When I'm doing well I can walk for about 5 minutes, I can get up and only grey-out. Migranes less severe. Almost always better in cooler weather.

8. Midodrine, Toprol XL, Celexa, Prozac, Imitrex

9. Meclizine, Phinergan

[Sunfish]

there are A LOT of new folks so thought it would be good to bring this up to the surface.

at which point i realized that since i've never written my own response to it i should probably do that as well (says slightly embarassed me )

1. Name: Melissa Anne

2. Age: 26 (but not for long...)

3. Dx: Autonomic Failure/ Progressive Autonomic Neuropathy (including severe gastroparesis, intestinal dysmotility, GERD, neurogenic bladder, sleep apnea, hypo/anhidrosis, etc.); possible Mitochondrial Disease; iron-deficient anemia

4. Age at dx.: 17

5. Where you live: just moved back to Toledo, OH (where i grew up); previously Baltimore, MD for 8 years & Cleveland, OH for 1

6. Symptoms at worst: bedridden, unable to sit or stand, syncope, unable to eat/drink at all, constant nausea/vomiting, neuropathic pain in all extremities, unable to focus/concentrate to read/write/watch TV, etc., coathanger pain if up at all, migraines, sleeping upward of 16 hrs/day, central line complications, major BP/HR fluctuations in every direction, severe constipation with intermittant diarrhea/incontinence, etc.

7. Symptoms at best: currently (as opposed to years back) the best it gets is being able to sit up for about 2 hours with legs up (though not without symptoms), nausea without vomiting, being able to eat a popsicle & keep it down (i'm always on IV nutrition & hydration at least 18 hours a day), able to read/write/watch TV or movies while lying down or reclined for certain periods, sleep 10-12 hours at night but no nap during the day, nerve pain only in feet, slightly less major BP/HR fluctuations, etc. in the past, i.e. years ago, i was able to be very active at times & symptoms were much better controlled

8. Medications/treatments, etc. that didn't work for you: lots don't help at all now, but things that never helped me at all or perhaps caused problems include IVIG, procrit, iron infusions, adderall, wellbutrin, toprol, lovenox, most pain meds

9. Medications/treatments, etc., that do work for you: at some time over the years the following have been helpful to me in some way(even if not now): high salt/fluid intake (orally &/or saline), domperidone, midodrine, mestinon, inderal, reglan (short-term), zelnorm, concerta, conditioning (especially swimming), daytrana, rozerem, CPAP machine (for apnea), TPN (IV nutrition since i can't eat), seasonale, levlite, nuvaring, florinef, DDAVP, compression stockings, correcting deficiencies (with high-dose CoQ10, B12 injections, carnitor, & potassium), protonix, clarinex, flonase, allergy shots, colace, zofran, rozerem, self-cathing, shower chair, misc. topicals/shampoos (for skin stuff), relpax, maxalt ...and my faith with a bit of stubborness mixed in

you can read more about what's going on with me currently by checking out my website linked below...

[nikigrl8883]

hi my name is nicole

im 23 yrs old

i was diagnosed with pots in august of this year /been sick since late april

i dont know what caused the pots yet

i am taking atenolol 25mg (half) bc pills yamin and bromocriptins for a prolactin thing

my heart rate off pills standing was up to 140 mostly about 120 now its less than 100 with half a pill

my bp gets pretty low now which wasnt a problem at ist

i am from massachusetts

my symptoms since this started

lightheaded all the time sometimes dzzy

feeling very anxious

racing heart when standing and even waking up in the middle of the night with one

tingling in hands and feet//partial numbness in feet

severe head pressure not headache

tired

weakness(new)

low bp

nausea somtimes

i had the runs all the time at ist

lost alot of weight

my symptoms now

lightheaded

tachy while standing with low bp

weakness/tired

gained weight

chest pains..before too

headaches somtimes

nausea somtimes not often and not that severe

LUMP in throat tightning in esphagaus

somtimes numb hands wrists waking up just partial numb like i layed on them

theres probably way more i cant think of

oh hot flushed cold sweats walking around

i have to put this i cant belive i forget it was the scariest symptom i had

somthing like my heart stops and i have to gasp for air i feel like im going to have a seizure but i dont (that happened at ist alot)

[P SUDIK]

1. Nancy

2. 52

3. POTS

4. 51

5. Baltimore, MD

6.lightheaded, dizzy, pressure in chest, feeling sick, unable to think, feeling warm,

extreme fatigue, insomnia, poor reaction to normal stressors, no stamina, GERD,

interstitial cystitis, GI gut dysmotility

7. insomnia, poor reaction to normal stressors, poor stamina, GERD, gut dysmotility, fatigue

8. florinef, midodrine, drinking lots of water,timolol, raising head of bed did not help POTS

9. some exercise (weights on the floor), some walking, decreasing sweets in the diet, positive outlook and not feeling sorry for myself, accepting was is and going on from there, being aware of my limitations, but pushing the envelope just the same, not giving in, being aware that I'm here for a purpose

You sound so much like me,i am 59 got pots in2003 after back surg and an infection.I am barely functional, nothing has helped me except keeping well hydrated. pls tell me more about you how u got ect. P my e-mail address is pat-s310@sbcglobal.net

[shannon]

1. Shannon

2. 21

3. POTS

4. diagnosed at age 17

5. Minnesota

6. at worst: where do I start? .... At worst I was almost always in bed and constantly weak and fatigued.

7. I am at my best right now! I am still tired a lot and need to maintain a regular sleep and food schedule, but I am able to keep up at college full time as a double major!

8. Imitrex (for migrains) made me verrrry sick. Also I'm allergic to the anti-nausea med phenergyn. Topamax (for migrains) also made me sick...wasn't able to keep my food down which also caused weakness.

9. Currently I'm on Mestinon and Inderal (and use stockings PRN), and I am healthier than I've been in years.

[Guest Eliza]

1. Eliza

2. 30yrs

3. POTS (possibly caused by my psoriatic arthritis...autoimmune disorder)

4. been sick since a child but not dx with POTS until 2yrs ago

5. College Station, Texas (home of the Aggies....but didn't go to school there)

6. Pre-syncope, tachycardia, hypotension, severe fatigue, low grade fevers

7. tachycardia, severe fatigue

8. Could not take midodrine due to headaches; no more BB's due to hypotension

9. haven't really found any meds that work well yet. I take florinef, sodium tabs, an "off-label" vasoconstrictor, muscle relaxer, and pain meds (for joints).

[runningshoe]

1. Lina

2. POTS

3. 42

4. started fall 2006, dx one month ago

5. MA

6. started with a presyncope while driving, tachy, pressure behind eyes, disconnected, can't focus, off balance, dizzy, want to throw up, scared, headache, tired, can't stand, jitters

7. can feel normal for a few hours a day, can do yoga, walk

8. don't know yet

9. trying beta blocker, florinef

[seb10]

Thought this was a good post to bring back!

I realize all of our stories are on this board, if not entirely, in bits and pieces. I was wondering if people would be willing to post just briefly their specifics. I forget who said what and who has what and who has tried which med, etc. without looking back through numerous posts.

Basicallly,

1. Name

2. Age

3. Dx

4. Age at dx.

5. Where you live

6. Symptoms at worst

7. Symptoms at best

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

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

1. Sarah

2. 23

3. POTS, hypersomnia, CFS

4. Diagnosed June 08, showed symptoms since 2005ish

5. Colorado

6. Completely incapacitated. Sleep 20 hrs/day -- stuck in bed for 2 years. Brain fog/memory loss. Unable to regulate body temperature. Haaaate it. It stunk!

7. A little sleepy, but up and moving! Still have trouble with temp regulation and forgetfullness, but loads better. I almost have a regular sleep pattern now! Yay!

8. Yaz -- BCP containing diuretic. Midodrine w/o Meteprolol -- felt exhausted. Vitex for hormone regulation.

9. Meteprolol, Midodrine, Klonopin. And, it's not a med, but GATORADE!

[firewatcher]

1. Jennifer

2. 36

3. No official dx, pending dx of Autonomic and peripheral neuropathy, Partial Diabetes Insipidus, POTS?, unknown endocrine issues

4. 36

5. Georgia, Atlanta area

6. Incapacitating migraines, tremor, hallucinations, brainfog, tachycardia, narrow pulse pressure, dizziness, nausea

7. Tachycardia, exercise intolerance, fatigue, daily headache

8. Too long to list

9. dDAVP, Inderal and Klonopin

[delphicdragon]

1. Sara

2. 24

3. POTS, EDS- Hypermobility Type

4. 22

5. Connecticut

6. Tachycardia, nausea, abdominal pain, chest pain, diarrhea, fatigue, low/high BP, panic attacks, seizure like episodes

7. Tachycardia, nausea

8. Florinef, Propranalol (due to asthma)

9. Sudafed, Salt

[pat57]

1. Name: Pat

2. Age: 51

3. Dx: first pseudo seizures, then epilepsy, then OH and NCS

4. Age at dx. 41 with pseudo seizures - 45 -OH and NCS

5. Where you live: PA

6. Symptoms at worst: Dizzy unless laying down unable to stand safely ,that is ,without stumbling unable to sit without being dizzy - seizures

7. Symptoms at best: I feel best going full tilt and have done "crazy" things like cut down big trees with a pruning saw. Also broke up and removed slab of concrete single handedly from driveway. Hundreds of bags worth. Took a while.... That was before Norpace. Such behavior is not necessary to feel ok now. I do still feel best in motion.

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

epilepsy meds, BB, florinef

9. Medications/treatments, etc., that do work for you: Norpace - must have it - compression stockings - water and salt loading - St. Johns wort

[MelissaCrystal]

1. Name: Melissa

2. Age : 22

3. Dx: Dysautonomia- POTS

4. Age at dx: 21, but have had POTS since 6th grade

5. Where you live: San Francisco, CA

6. Symptoms at worst: List in my signature, but loss of vision, nausea, and passing out when moving, along with digestive issues, tachycardia, low BP

7. Symptoms at best: loss of vision upon moving, can walk and stand for about 10 minutes until symptomatic

8. Medications/treatments, etc. that didn't work for you: Beta blockers not doing anything, paxil, desmopressin for bladder, all kinds of SSRI's didn't re-regulate nervous system

9. Medications/treatments, etc., that do work for you: so far no luck