Who, what, where, when, and why?

[Jackie]

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

Thanks!

I'll go first.

1. Jackie

2. Age 37

3. POTS

4. Diagnosed last summer at age 36.

5. Ohio

6. Thirst/urinatinon, diarrhea, loss of appetite, hands/feet sweating, fast HR/low BP, palpitations, later leading to anxiety, panic attacks, sleep disturbance, tinnitus cerebri, night sweats, electrolyte imbalance, basically inability to function.

7. Best (?) Low BP (lower at times than others), sometimes aware of pounding heartbeat, mood swings (sometimes anxious sometimes depressed), sometimes a little hand sweating, sometimes the tinnitus cerebri (noise in my head), appetite up and down, feeling of lack of blood flow to my head (sometimes with low blood pressure 80s/60s, sometimes even at normal for me 100s/70s) worse with hormone fluctuations.

8. Ativan, Klonopin, Atarax, Lexapro, Imodium (all for anxiety dx before POTS dx except for Lexapro by Dr. Grubb which I couldn't tolerate).

9. Xanax (1.0 mg to 1.25 mg a day in .25 mg divided doses) and atenolol 25 mg once a day because it is all I've got right now. Would like to try something different.

[futurehope]

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

[hilfgirl33]

1. Name Elaine

2. Age 37

3. Dx POTS edited to add orthostatic hypotension and vasovagal syncope

4. Age at dx 35

5. Where you live PA

6. Symptoms at worst Bedridden, extreme dizziness, tachycardia, chest pain, left arm numbness, anxiety, palpitations, fatigue, extreme exercise intolerance

7. Symptoms at best fatigue, chest pain after being on feet for a while, some light-headedness, tachy and shaky if try to do too much

8. Medications/treatments, etc. that didn't work for you Florinef, Mitodrine, Cortef, IV saline infusion

9. Medications/treatments, etc., that do work for you Toprol 12.5 mg twice a day, salt and water therapy and Lorazepam 2.5 mg daily

[Roy]

1. Roy-alias

2. 31

3. POTS and overlapping IST (ectopic sites ablated)

4. DX'd 29

5. Las Vegas NV

6. fatigue, tachycardia when standing, poor stamina, mild sweats and chills, mild headaches and nausea, IBS- ocassionally, over stimulated easily, stress, memory/thinking trouble, insomnia, mood swings, palps, constant thirst, visual disturbances, heaviness/numbness in legs and arms,

7. At my best I will only have the fatige mild tachycardia when standing and the mental problems.

8. Zoloft, Paxil, cardizem, digoxin

9. midodrine, ativan, lots of water, mineral complex, salt. Meditating 3-4 days has really helped me alot with energy and memroy problems, walking everyday if symptoms allow, doing tricep dips on a workout bench has helped to build my upper body some and doing leg lifts on the floor has toned my legs up. I will be going to the gym soon to start a mild workout program and increase it as tolerated. Also, acceptng my illness has helped me cope with POTS as well as trying to stay positive.

[denabob]

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!)

[seaboardbc]

1. Name: Brenda (Bren)

2. Age: 42

3. Dx: POTS

4. Age at dx: 41

5. Where you live: Minneapolis

6. Symptoms at worst: HOw much time do you have ? Chest pain that's about an 8 or 9 on a scale of 1 to 10, tachycardia, extreme fatigue, Raynauds, neck and back pain, numbness and tingling in arms and hands, dizziness, brain fog, blurred vision, palpitations, erratic blood pressure, joint pain, sleep disturbances, trouble regulating body temp, ringing in my ears, pain in left arm pit (no one can figure that one out), rashes

7. Symptoms at best: slight tachycardia, angina that's only about a 5 on a scale of 1 to 10, mild fatigue, periodic dizziness

8. Medications/treatments, etc. that didn't work for you: Provigel, Zoloft, Wellbutrin

9. Medications/treatments, etc., that do work for you: Pindolol 5mg 2x/daily, Diltiazem 180 mg 1x/daily, Imdur 60 mg 1x/daily, Neurontin 400 mg 3x/daily, Adderall 90 mg 1x/daily, Singulair 1x/daily, Nitro (as needed for chest pain), a positive attitude and the determination to find a way to have more good days than bad days

Comments: I never have "normal" days (days like I had before POTS got me). Now my "normal" days are like I listed under "symptoms at best". When I have my "symptoms at worst", it's almost like my body goes out of "remission" and everything with my ANS goes out of whack and stays that way for weeks and sometimes months at a time (and this happens frequently over the course of a year), but I haven't been able to figure out what sets it off. I've been put on Prednisone a couple of times when this has happened and it seems like the Prednisone helped turn things around for the better, but I've been told by my doctors that I can't have Prednisone every time I have a flare up because the side effects down the road are so bad. So, I guess the next flare up will be treated with "grin and bare it"

[lalalisa]

1. Lisa

2. 24

3. Chronic EBV (mono) and POTS

4. 23

5. Louisville, KY

6. Symptoms at worst: Extreme fatigue, Panic attacks, Tachycardia, Weakness, Blackouts (passing out), Poor concentration/memory, dizziness, sweating, visual disturbances.

7. Symptoms at best: Fatigue and mild tachycardia

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

9. Medications/treatments, etc., that do work for you: Proamatine, Paxil CR, Toprol XL, Benadryl (for sleep), Singulair, and most of all Lots of sleep!

[MightyMouse]

Nina 39, Dx'd at 32 w/ POTS & NCS, and at 37 w/ EDSIII. Symptomatic all my life.

Philly suburbs

Sx at worst: high tachy, then bradycardia, high bp/low bp, passing out, nausea, brain fog, heaviness of limbs, GI motility problems, migraines, unable to be upright for long periods, tremors, heat intolerance, muscle aches, etc.

Sx at best: nausea, dizzy, and need lots of sleep.

Tx that didn't work: hmmm...most things worked at least briefly

Tx that does work: LOTS of sleep, high salt diet, celexa, ambien, tons of allergy meds & gi meds. Also, at various times, florinef, proamatine & neurontin.

[Dawg Tired]

1. Gayla

2. 45

3. NCS

4. 43

5. Missouri Ozarks

6. Bedridden. Dizziness, nausea, pre-syncope, blackouts, brain fog, blurred vision, weakness. EXHAUSTION! I never before knew anyone could be this tired. I feel like I can't lie flat enough on the matress to rest. Days when I can't tell you my name or address. I quit driving 2 years ago. I woke up one morning and didn't know where I was, who I was, or who my husband was. I have days when I can't watch/listen to TV because it is too much stimuli. (That might be a GOOD thing! LOL)

7. I can sit on a barstool in front of the stove and cook for short periods of time. I can read instead of using books on tape.

8. Florinef, Midodrine, Wellbutrin

9. Phenergan, Xanax

[Louby]

1. Name: Lisa, but usually called Louby (my boyfriend thinks I am completely Loopy so Louby came about as a nick name)

2. Age: 26

3. Dx: .POTS

4. Age at dx: Diagnosed at 23, however I think I have had this for quite some time.

5. Where you live: London

6. Symptoms at worst: There is such a long list, Tachycardia, extreme tiredness, needing to pop to the loo, unable to stand for any length of time, dizziness, feeling sick, inappropriate sweating especially at night, panic attacks, confusion, syncope, pain in joints (and I also get that pain in my armpits - isn't that weird! think that may be related to the pulse point pain I get in my neck and arms) pain in my neck, or pressure points, regulation of body temperature either really cold or really hot, extremely low blood pressure, unable to eat, constant thirst, trouble regulating breathing, I also get claw like hands and feet, and sometimes have trouble with bowels. The usual I guess?? Also ringing in ears, and not being able to sleep - I'll stop there.

7. Symptoms at best: I always feel tried, and have trouble getting out of bed. Usually feel a bit distant in the afternoons - and spend most of my days feeling like a dizzy blonde! (I dyed my hair last year, it's a great excuse) I also can never stand for long periods of time, and have troubles at night with sweating too much.

8. Medications/treatments, etc. that didn't work for you: I have only ever been on florinef, which most of the time keeps the really bad times at bay. I am just going for another round of tests, to see if anything better will work for me.

9. Medications/treatments, etc., that do work for you : Same as above!

[MomtoGiuliana]

1. Name: Katherine

2. Age: 35

3. Dx: POTS

4. Age at dx.: 34

5. Where you live: MD's eastern shore

6. Symptoms at worst: bedridden, no exercise tolerance at all, beyond exhausted, blurred vision, dizzy, tachycardia, tremors and jerking motions, loss of appetite, extreme thirst, nausea, insomnia, burning sensations in skin, muscle pains, felt unable to regulate body temperature (too cold or too hot), anxious, depressed (I wonder why!?)

7. Symptoms at best: very mild tremor, exercise intolerance, easily tired (must have 9 hours of sleep a night, plus a couple naps a week), weird feeling like there is glue in my chest, usually have to stand from lying or sitting slowly.

8. Medications/treatments, etc. that didn't work for you--being diagnosed with depression!

9. Medications/treatments, etc., that do work for you--salt, fluids, low dose beta-blocker, low dose SSRI, slowly stepped up exercise regime, breathing exercises to assist relaxation

[pamyla]

1. Name Pam

2. Age 30

3. Dx POTS & EDS

4. Age at dx. 23 for pots, 27? for eds

5. Where you live Northern Virginia

6. Symptoms at worst badly fatigued, fast heartrate, anxiety, insomnia, muscle aches, brain fog, dizzy, extreme thirst, exercise intolerance, no sweating, always cold, hypoglycemia

7. Symptoms at best tired, exercise intolerance, excess sweating, always cold

8. Medications/treatments, etc. that didn't work for you midodrine, ambien, paxil (couldn't tolerate any of these!)

9. Medications/treatments, etc., that do work for you atenolol, zoloft, sonata, xanax, vitamin supplements, light exercise (walking, swimming, yoga), meditation, pranayama, getting lots of rest, odaban (for sweating), changing diet to avoid sugar and carbs

[Merrill]

My name's Merrill.

I'm 42; I have POTS.

I was diagnosed 6 weeks ago, but I've had the symptoms all my life (at least since adolescence). Looking back, I'd have to say some years were better than others.

I live in Chicago.

My symptoms don't typically change day to day. I think, however, that 2003 was a worse year than other years, which is what finally sent me to cardiologist to find out once and for all what was going on with my heart. (Also, I've always felt low-level sick--sicker than everyone else I knew--and I wanted to see if I was truly strong and healthy enough for pregnancy. I've had 2 miscarriages and am pursuing fertility treatments.)

Anyway, this year I had 15 lbs unexpected and undeliberate weight loss, difficulty standing more than a couple minutes, zero heat tolerance, zero exercise tolerance, bowel/gut problems, anxiety, I don't sweat--except I've been drenched a few times in middle of night--phlegm in throat at night, numb arms/hands during night, "brain fog"--difficulty expressing myself sometimes, losing train of thought, words, etc--and most important--fierce tachycardia. My heart rate only seems to go below 100 when I'm lying down or sleeping; if I'm walking at all, even slowly, it's in the 140s. Sitting, anywhere from 105-130 bpm. (That would make anyone feel anxious!)

I haven't tried any medications. I'm on high salt, high fluid, and compression hose (where have these socks been all my life??? I LOVE them.) I didn't want to try meds til we see whether I'll be preggers... I imagine a beta blocker could be in my future.

My favorite thing about the diagnosis: I'm much kinder to myself. I no longer blame my breathlessness in climbing 10 stairs to being deconditioned; I no longer blame my lack of desire to exercise on laziness. I no longer push myself to do the yoga moves in class that are too rigorous because they're "good for me." And I can say, "it's the POTS" when I feel panicky or when I feel discouraged by the way my body is handling stress etc. (Is this more than y'all wanted to know?)

[EarthMother]

1. Nancy

2. 41

3. POTS (CFIDS, Autoimmune Thyroid, EBV ...)

4. POTS is just this year, Hashimoto Thyroid in my 20's and EBV about 6 years ago with my diagnosis of Chronic Fatigue Syndrome

5. California

6. Symptoms at worst: I've had two spells in the last 6 years that pretty much kept me down in bed for months at a time. At the worst, I can't stand up at all, sitting up is exhausting ... and the panic, well that's just the icing on the cake. Other symptoms include extreme morning nausea, 30+ heart rate increase on standing, hot and cold flashes, rapid weight loss, heart palpitations .....

7. Symptoms at best: If best is these last 6 years ... I can do the grocery shopping on a "good day" but then I need to lie down for an hour or so to recover. I can work but I need to take breaks. During a good spell that might just be a long lunch hour (or two) during this recovery I work part of the time from my home.

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

Hard to say, I've done Florinef before, can't really say it helped or hurt. Eventually I just improved gradually. I've tried several of the Xanax and other lines of SSRI's or anit-panic meds .... never have been successful on any of these so now I fly solo. I took gatorade for about two years ... then developed systemic candida which I attrib to the sugar, so that's out now.

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

In December I started taking DDAVP (anti-diuretic) and have been able to put back on 10+ of the pounds I lost in the summer with this most recent crash. I also take between 600 - 800 MG of magnesium which helps the heart palps. I wear those high compression thigh highs, they help on some days. Other things I do that I attribute "improvement" to include massage therapy, QiGong (or Pranic Healing), and Somatic Experience Therapy.

But the #1 thing I do that helps ...... Come to this board.

[Dawg Tired]

Hey, Louby, I went ahead and dyed my hair blonde too! I also thought it more appropriate! Gayla

[Sue]

1. Sue

2. 42

3. Neurocardiogenic Syncope

4. Diag/26 Mild symptoms Now out of control

5. Michigan

6. Symptoms at worst. I don't get spin dizzy, I get walking in a rowboat can't get my balance dizzy. panicky, sweaty, lack of concentration, jittery. heaviness, numbness on right side of body, etc When I have an episode I usually can't shake it for weeks.

7. Symptoms at best. Thats almost funny above in moderation I guess

8. Medications that don't work. List is too long. Mostly beta blockers

9. Medications that work. Well not exactly working but have just switched from Celexa to Lexapro. Also take florinef. Also just started high salt and gatorade.

My best medication though is my family..

Agree with post before/the best thing that has happened with this illness is finding message boards. Its hard to talk to "normal" people who just can't comprehend what we feel. I have a great support system but well am sure you know what I mean. I am truly sorry other people feel the way I do but on the other hand is nice to know I not crazy like some doctors say.

[Guest Julia]

1. Julia Tremp

2. Age--> 44

3. Diagnosis----> POTS and on going cervical stenosis/chiari issues/hashemoto's thyroiditis, IBS

4. Diagnosed with POTS at age 41, but have had problems on and off at least since puberty---but I remember a few IBS spells/hyper adrengic spells even before that.

5. Where I live------> Toledo, Ohio

6. Symptoms at worst-----> hyper adrengic, tachycardia (even on beta blocker), painful joints, wiped out/fatigue, very constipated/slow motility, intense pain in upper spine and back of my head, short of breath, tremors, light headed & Low blood pressure. The worst of these is the hyper adrengic and tachycardia-----I can deal with the rest. I have no tolerance for heat/or too cold. I was bed ridden in the beginning---but can function (not well) now with even my worst symptoms, minus the tachycardia/hyperadrengic issues.

----note---->>>I rarely get hyper adrengic any more---otherwise I would go nuts.

7. Symptoms at best---> always have the upper spine pain, sluggish, low blood pressure, tremor, limb numbness, and low exercise tolerance.

8. Medications that didn't work-----> The Docs tried to put me on paxil (Bad reaction), Ativan (didn't really help), and one idiot tried to put me on risperadol (an anti psychotic I refused to take) and prilosec (which only made my gut motility much worse). Myralax (didn't fase the consitpation--IBS)

9. Medications that do work-----> Propranolol ( for the tachycardia), Wellbutrin SR 100mg for the hyper adrengic attacks--> (make's my body less sensitive to the adreanaline), synthroid (for my hashmotos thyroiditis). Haven't tried the neurontin yet for pain, and I take (maalox) if I get too much excess acid seconday to the slow bowel motility. I take medimucil (spelling?) and milk of magnesia as needed for you know what.

Julie :0)

[ethansmom]

1. Name: Jessica

2. Age: 22

3. Dx: Postural Orthostatic Tachyardia

4. Age at dx: 19

5. Where you live: Washington DC Metro Area

6. Symptoms at worst: I was bedridden for about 3-4 months, so lightheaded I couldn't stand for more than a minute or two, extreme tachycardia, nausea/diarrhea, shortness of breath, overall awful feeling.

7. Symptoms at best: Most days I just have fatigue, and some minor lightheadedness, occasional stomach upset (but only if I don't stick to my diet).

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

9. Medications/treatments, etc., that do work for you: low dose Florinef, Pro-Amatine, Licorice Root, increased salt, lots of sleep at night, and tons of fluids, including electrolyte drinks.

[Louby]

Dawg Tired - hee hee, glad to know i am not the only one! It was the best thing i ever did.

[llp479]

1. Laura

2. 41

3. POTS

4. 39

5. Northern IL

6. Tachycardia, high BP, shortness of breath, IBS, lymph node swelling, chest pain

7. Vertigo, lymph node pain and swelling, IBS, episodes of tachycardia, chest pain

8. BETA BLOCKERS - almost killed me - literally!

9. Micardis 40 mg for BP - cold pack on back of neck helps to lower HR, 32 - 64 oz of water daily, Immodium and Prevacid as needed.

I have found great comfort in having a diagnosis. Instead of freaking out about some strange symptom, I chalk it up to POTS and keep going. I refuse to let this thing get the best of me!

[bjedland]

1. Betty Jo

2. 32

3. POTS, hypothyroidism,bipolar

4. hypothyroidism 29, bipolar 31, POTS 32

5. north dakota

6. symptoms at worst-fainting, fatigue, tremors (sometimes so bad i am unable to do daily tasks such as eating) heart palps, nausea,joint and muscle pain

7. symptoms at best-tired, heart palps, tingling sensation throughout my body

9. Medications/treatments that i am trying now- midodrine, proprananol, wellbutrin, synthroid, lamictal and seroquel

[purplefocus]

1. My name is Paige

2. Age 37

3. Dx.... POTS and NCS

4. Diagnosed last October

5. Alabama

6. Dizzyness, fainting, no energy, shortness of breath, chest pain, brain fog, difficulty

sleeping, tachycardia, low bp, excessive thirst, numbness in hands and arms,

and pain in legs

7. Mild fatigue, energy at times during the day but not constant, no passing out for a

few days in a row, chest pain and shortness of breath not constant during the day

and able to think clearly

8. Low dose of florinef

9. Now on florinef, lexapro, neurotin, atenolol, protonix and neproxen, are they

working? Well I do have days where I function for at least half of the day.

[WeimerMom]

Jackie,

Thank you for asking for this information. Since I am new to this site, it will also help me. The one other thing I would like to ask for is some imformation on the abbreviations. Like NCS. What is that? I searched for several hours last night trying to find it. I was looking for three words that would fit. Is it Neurocardiogentic Syncope? (only two words, but was as close as I could get)

Anyway, here are my stats..

1. Scheryl

2. 47

3. POTS 1999, Vaso Depressor Sycope, 1998, (Hypothroid, polycystic overies, years ago. Believe these were from POTS even back then. Was also treated for adrenal disease back in the late 70's/80's with years of Prednisone/Prednisalone...)

4. 41, 42,

5. Suburb of Columbus, Ohio

6. Severe thurst, FATIGUE, sleep disorder, dizzyness, severe tremors almost like a seizure(teeth chatter, hand and arms shake uncontrolably, slurred speech) Eye muscles cross and can't straighten them up, half of my vision going grey. (very scary when driving). Also, lots of "floaters". Legs going to jelly. Horrible memory loss, thought I had altzheimers. Heart beating up in throat, terrible sweating when trying to do anything. Sinus problems. Legs from knees down always hot. legs felt like weighed 500 lbs a piece and were made of wood. Left arm pain and airpit pain. passing out or near passing out. Family, friends and co-workers always knew when I was having a spell, turned white, acted in a daze with slurred speech and memory loss. Depression from all of it... Intestinal upset, for one extreme to the other. Shortness of breath, muscle cramps. weight gain...inability to concentrate and learn new things. Probably more, but getting depressing listing it all

7. FATIGUE, dizzyness, sleep disorder, weight gain, legs still going to jelly, still memory loss, but not as bad, exercise intolerance, still some syncope symptoms and always intestinal problems. shortness of breath, hot legs and sinus problems. Everything seems to be cyclical thougth. One set of symptoms calm down and another pops up....

8. Nothing but ProAmatine has worked and can't use it now because I gained 84 lbs taking Celexa and Welburtin together. I kept telling the doctors that I was gaining the weight. The premise was that Wellburtin was the new weight loss drug, so they kept uping the dose, but it acted just the opposite for me. At that time I didn't know how to get myself off a medication and just kept taking it, because I'd heard you can't just stop antidepressants. I'm now at 341 lbs. and miserable. I need to get this weight off. Anyway, I tried Zoloft, swelled me up like a balloon, couldn't even put my feet on the floor for fear the skin would split. Effexor, so dizzy I had to lay in bed and hold my head still. Lexapro, had diarea for two months straight and that was on 1/2 to 1 tablet a day. Can't remember the other ones but nothing has worked yet.

9. High salt diet and take it slow and easy. Miss a lot of work and my house is a total mess. Won't let anyone through the door, too embarrassed for them to see it. Still looking for something that will help. Heard that low carb is the way to go, but haven't done it since the 80's. I know that low calorie puts weight on me. Guess I'm carb sensitive as they say now.... So I'm going to try the Atkins diet again. Just need to get the energy to do something other than sleep. Takes energy to shop, put away and then chop and prepare "diet" food. I haven't had any bad reaction to food like I've read about some of you... I guess I should be thankful. Anyway, they uped my synthroid meds the other day, maybe that will help cause I can't take anything else...Oh, forgot something. I did find some relief from the intestinal upset. I started taking fiber pills, (Sam's club brand is cheaper than FibreCon and works just as well) They acutally cut down on the diarea when I was taking the Lexapro. So, they actually help in both ways.

Not used to doing this, want to check and recheck my listing, but have to stop, so here goes......

[briarrose]

NCS is Neurocardiogenic syncope

[Aprilmarie52]

april

20

dx@17 with POTS

I live in Locust Grove GA

At my worst, I cant get out of bed, severe tachycardia, low BP 90/60, tremors, confusion, anxiety, depression, memory loss, muscle weakness, heart palps

at my best I feel fine, just as long as I avoid my triggers. I have a harder time in the morning, some days I dont even know that Im sick and others I cant remember what it feels like not to be sick

What hasn't worked for me lexapro, effexor

what's working .1 florinef, salt tablets 4 times a day, potassium supplement, zoloft and lots of qatorade