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1. Lois

2. 55 (I am the Old Lady of this group)

3. POTS (possible EDS, pacemaker dependent)

4. Diagnosed in 1996 though symptoms began in 1993 but no one familiar with such a syndrome like we are all blessed with). Triggered possibly by a horrendous ear infection.

5. Potomac, Maryland

6.Symptoms at worst: Difficulty with standing for any period of time; inability to retain fluids, fatigue, lethargic; intense sweating and dizziness, strange heart beats, horrible migraine headaches, difficulty sleeping. Have been hospitalized several times for several days at a time until I could begin to walk around. :)

7. Symptoms at best: Difficulty with standing in line or in one place for more than a couple minutes; many premature heart beats; tired, difficulty sleeping. Dificult to get up in the morning--just thinking about how I will feel makes me want to stay in bed. Very lightheaded when in heat. Would do best with a good nights sleep and a nap during the day. :D

8. Meds that did not work: Clonidine; Phenobarbitol; Florinef (migraines that led to hospitalization), salt pills, some kinds of beta blockers, sometimes midodrine

9. Meds that do work: Octroetide, Neurontin, Zoloft and sometimes Ritalin. Midodrine gives me bad chills and head tingling.

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1. Kristen

2. 25

3. POTS - originally diagnosed with Orthostatic Hypotension three years ago, but doctor just changed diagnosis to POTS a few weeks ago

4. 22 - when started having problems and diagnosed with OH, 25 - POTS

5. Michigan

6. Lightheaded every time I stand up and sometimes even when sitting; heart races, sometimes feels like it skips beats; blood pressure either drops or stays the same; vision often goes black; sometimes pass out completely; forget what I'm saying, can't concentrate; feel very cold or very hot; break out in a sweat; face and chest turn red

7. Lightheaded when I stand up but not every time; lightheaded when I bend down or raise my arms above my head; tired; lightheaded during and after exercise

8. Florinef, Neurontin and Depakote (they thought I was having seizures at first)

9. Just started Paxil two and a half weeks ago - actually felt ok yesterday and today for the first time in weeks, so I'm hopeful! Eating lots of salt helps (I live on Chex Mix) and drinking Gatorade helps too

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1. Danelle

2. 37

3. POTS, CFS, fibromyalgia, depression, panic disorder, chronic anxiety, hypoglyclemia, ?inappropriate sinus tachy(dr's can't agree), mild MVP, etc etc

4. 37, but have had symptoms for 19 yrs, maybe even longer

5. NC

6. Where do I start? Literally unable to function, EXTREME fatigue and weakness, BP readings whacked out, dizziness, black out spells, tremors, cold clammy sweats, bad tachy, bedridden, major brain fog, slurred speech, chest pressure, lightheaded, nausea, palpitations, increased urination and thirst, panic attacks, major anxiety, shortness of breath, total exercise intolerance, confusion and not able to think properly, unable to stand, even sit for any length of time, headaches, heavy and numb extremeties,, diarrhea/constipation, difficulty getting enough air, unable to "stay asleep", can't drive, sweating but worse at night, muscle/joint aches and pains, can't eat much at all without feeling full quicklyand for hours and nauseated (less than a half a sandwich), ringing in ears, inability to tolerate any heat/sun, can't tolerate any extra stimuli, temp extremes, honestly, I could go on and on.... :lol:

7. Unfortunately same as above but a litte less severe :(:(

8. Lopressor, sectral, cardizem, corgard, midodrine, florinef, wellbutrin(that's what i can think of off the top of my head)

9. Atenolol works somewhat, klonopin helps with the anxiety and panic but it is still there, increased sodium/fluids/gatorade-i guess helps, compression hose help somedays, rest rest and more rest

I'm sure I forgot some things but this is what I can think of right now. I too have colored my hair blonde :D

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1. Alicia

2. 20

3. Dx: POTS

4. Dx at age 17

5. Elyria, Ohio

6. symptoms at worst: nausea( worst in the morning), diarrhea, dizziness, lightheaded, tachycardia, fatigue, sweatiness, frequent urination, excessive thirst, shortness of breath, chest pain, heat/ cold intolerance, stomach feels heavy after eating small amounts of food, difficulty standing for long periods of time.

7. Symptoms at best: I don't know that I'm sick at all

8. Before my dx of POTS they gave me prilosec and other meds that dealt with my GI upset.

9. I've been on a low dose of Indural for years now and up until this point it seems to have worked. I've had a "flare-up" of symptoms and acquired symptoms i've never had until this point and am still on a medical leave from work. My dose of indural is increased from 30 to 60mg daily starting Friday. Drinking plenty of gatorade and water and eating lots of salt seems to help to an extent.

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1. Corina

2. 40

3. Dx: POTS

4. DX at 40 though my cardio thought of POTS 2 years ago

5. We live in a little village near Amsterdam (Holland)

6. symptoms at worst: tachycardia, bad fatigue, terribly cold, yawning all the time (are there anymore of you who have the yawning, didn't read it so far), difficulty talking (often can't remember the right words) and thinking, nearly fainting, chest pain, diarrrhea/constipation, exercise intolerance. Stopping now getting depressed of all these things!

7. symptoms at best: lightheaded, cold, long enough stand to do the dishes without having to sit several times, well everything mentioned above but a little milder.

8.meds that didn't work: florinef, fludrocortisone, midodrine (so far, maybe it will work if I take a higher dose)

9. things that do work: some exercises to get the pressure up, selokeen (beta blocker) using a high dose makes me feel a little better, drinking and using lots of salt would help but it doesn't make me feel better (jet :lol: )

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1. Jessica

2. Age 22


4. Age at dx: 19

5. Live in West Virginia (moving to Florida in 3 weeks)

6. Symptoms at worst: Extreme lightheadedness & pre-syncopic episodes, off-balance, worst fatigue you can imagine, tachycardia, palpitations, shortness of breath constantly, nausea and diarrhea, severe brain fog, depression, cold hands & feet, pooling of blood, sensitivity to light and loud noise, pale, weakness/tingling in arms & legs, mild headaches, flu like feeling (body aches, sore throat).

7. Symptoms at best: Mild fatigue and lightheadedness- if I'm lucky I can stand for 20-30 minutes but pretty much live a normal life on a daily basis. Can't work full time but I can clean house, run after a toddler all day, run errands, drive up to an hour's distance, etc...I usually lay down in the afternoons to help with the fatigue.

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

9. Medications/treatments that do work for you: Midodrine, Florinef, Licorice Root, 90 ounces of water per day and salt on everything, watered down Gatorade. My best defense has been a diet that eliminates dairy, gluten/wheat, eggs, and refined sugar, and I try to eat all organic foods and steer clear of chemicals and preservatives.

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Guest veryblue

1. Natalie

2. 20

3. I wish a doctor could Dx me! Not quite IST cuz my heart goes really fast on standing but still stays high laying...not quite POTS cuz I can stand all day long with no problem!

4. This horrible nightmare hit me overnight with no warning this January...I've had this for 6 long horrible months now!

5. Nebraska during school year; California during breaks

6. At worst I have tachycardia, sometimes a mild headache, and a slight bit dizzy

7. At best I feel somewhat normal...I go to school, work as a server in a restuarant 5 days a week, and play competitive softball...so I guess I can't complain too much and will most likely recover from this since I am not affected too much, but still enough to make me miserable.

8. Atenolol...mad eme too tired

9. Propranolol...thats all I take!

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1. Amy

2. 28

3. Dx: "Probably" POTS (no tilt table test because my poor man's tilt showed a heart rate increase of 40 beats a minute but no BP change; my neurologist believes they don't tell you much unless BP is bottoming out); plus I have pre-existing panic disorder

4. Dx this year at age 28 but symptoms started late last year at age 27, three days following the birth of my first child, Delaney

5. Near Madison, Wisconsin, but grew up in Youngstown, OH

6. At my worst: Heart rate of at least 115-140 on standing, shortness of breath, severe weakness, swelling/blood pooling in legs, anxiety (feels like I'm being chased by a tiger and can't run because I am too tired), chest pain, high and normal BP, rapid and excessive weight loss, fatigue/exhaustion, exercise intolerance, brain fog/mild cognitive dysfunction, strange aching in feet that accompanies a nervous nauseous feeling -- like right before you walk into the dentist's office and know you're about to be drilled.

7. I haven't found a successful treatment yet except for the tachycardia, which is kept at bay with beta blocker. All of the other symptoms are, on a good day, still there but my energy level is occasionally better on some days so that I can exercise.

8. I've tried a beta blocker (metoprolol), Zoloft, clonazepam and Lexapro. Zoloft did nothing. Clonazepam helps the anxiety but nothing else.

9. Metoprolol keeps heart rate lower but not normal always. I thought Lexapro was working -- I just started it two weeks ago -- but now I'm not so sure. The book's still out on this one. Relaxation, exercise, massage therapy, meditation and funny movies are all that help. And my daughter's bright eyes and smile!

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1. Shari

2. 42

3. POTS-Graves

4. POTS-42(5 months ago) Graves(Hyperthyroid)-40(Thats when POTS symptoms started

5. Ohio

6. Extreme Fatigue, Weekness, Tachycardia, Shortness of Breath, Hands and Feet Tingle-Chest Pain, Neck Pain, Hoarseness-severity depends on level of fatigue, Swallowing Difficulty, Heavy Legs, Off balance (not so much dizzy-just drunk walk), Slow Moving, Excercise Intolerance, Joints crack all the time, Muscle Jerks, Burning and Pain in Right Foot, Drag Right Foot, Heat Intolerant, Chills, Cold and Clammy Hands and Feet, Constipation-Bloating, Brain Fog-Memory Loss-Hard to get the Words Out sometimes-Moody, Noise Sensitivity, Dry Mouth, Insomnia.

7. Fatigue, Slight Tachycardia, Hoarseness, Heat Intolerant, Constipation

8. Provigil, Mestinon

9. Synthroid-112mcg, Toprol-50mg, Cylert-75mg

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Hope you guys don't mind but I copied and pasted some of your symptoms so I wouldn't have to type them! :D

1. Stacey Yount

2. 36


4. 29 -1997 DX'd then but had my "collapse" on Nov. 6th 1995

5. Titusville, FL

6. At my lowest point I was down to 82 lbs on TPN and was not able to eat at all. That was in 1997 but 1998 back to 114 and now well.... :) Dizziness, tachy(167 or higher), nausea, HEADACHES,brain fog, flu feeling, sore throats,body aches, extreme lightheadedness & pre-syncopic episodes, off-balance,FATIGUE, palpitations, shortness of breath upon standing, nausea and diarrhea/constipation,sweating at odd times ,pooling of blood, sensitivity to light and loud noise, pale, weakness/tingling in arms & legs,neck pain, bedridden except use wheelchair to go to docotor. More that I know I am forgetting.

7.Everything above except for the weight loss. Still get nausea and pain but can eat enogh now to maintain. Have added chronic cough

8.Midodrine,beta-blockers, Florinef, every anti-depressant known, many others can't list them all

9. Acupuncture helps sometimes and the herbs the chinese doctor gives me I am hoping is helping. When I get a really bad headache a injection of Demerol/Phenergan helps. Darvocet helped with the body aches but then they decided it was causing my headaches so stopped ( still ahve headaches and now more body pain) Excedrin sometimes not sure why sometimes but sometimes.

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1. Mark, father of symptomatic daughter, and probable source of the genetic factors

2. 17 (daughter)

3. Dx: POTS (tilt table tested) + SPUDS (bleeding disorder acronym)

4. Age at dx: 14 (POTS), 17 (SPUDS), symptoms since 11 or even earlier

5. North Carolina

6. Symptoms at worst: Chest pains, lightheadedness, fatigue, migraines, tachycardia/palpitations, chills, hot flashes, heat intolerance, hard to exercise, light/sound sensitivity, GI problems, excessive mood swings

7. Symptoms at best: headaches, chills, can be active, but not in a strenuous athletic way, no major issues in a "relative" sense compared to history

8. Medications/treatments, etc. that didn't work for you: beta-blockers (incl. Toprol XL. Nadolol, others), florinef

9. Medications/treatments, etc., that do work for you: Adderall, SSRI, Depo Provera, fluids, salt, positive attitude

In general, last 6-mos on current treatment has been better that last 6-yrs. Beta blockers seemed to help with the chest pains, but led to MAJOR fatigue. And one beta blocker was blamed for an allergic reaction that caused my daughter to lose all her hair completely. Now, however, under a new doctor's care, her energy is back and most "level 10" symptoms have subsided to hardly noticeable with the exception that the migraines -- though reduced to just headaches -- are still annoyingly hanging around. High fluid intake can be a real pain for a teenager, but then, not nearly as bad as losing all your hair (in 72-hrs). Also, she's got a mildly sunken breastbone (pectus excavatum) noted by some as being an indicator of a potential dysautonomic "at risk" profile. Keeping our fingers crossed for the months ahead since her treatment is currently working fairly well (at least when compared to where we've been).

Have a 6-yr old son with connectivity tissue issues (extremely rubberband boy flexible), and as such as often been noted in disautonomic patients, we're keeping an eye on him. Our 14-yr daughter really hasn't displayed any problems -- or at least any mood swings from Hades are being attributed to the age and nothing more, though we remain "watchful".

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Dawn Anich


Dx: POTS , Orthostatic hypotension, gastroparesis, unknown neuromusculat diasese possible mitochondrial myopathy

age of diagnosis: 35

SE Wisconsin

At worst I have sleep 18 -20 hrs a day, which I call crashes. ...Tachycardia, heaviness, numbness and tingling , brain fog, blurred vision, tremor, exercise intolerane, cold or heat intolerence, chills, aches and pains, headaches, nausea, inability to eat, weight loss, poor balance, ataxia, poor coordination, moodiness, depression anxiety, muscle weakness, presyncope..blackouts major fatique

At best I have exercise intolerence, easy muscle fatigue, mild headaches, walk up to a mile then loose muscle control, mild fatique. Some difficulty with standing

I have tried many beta blockers, midodrine, clonazepan....

I take nadolol, florinif, wellbutrin and effexor.

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  • 4 weeks later...

1.Name: Hayley

2.Age: 20

3.Pots and EDs III

4.Age when dx ; 19

5.live; ,england

6. ~Symptoms at worst;bedridden , chest pain, very painful joint pain and aches,headaches,sickness,loss of concentration,weakness,extreme exhaustion,breathlessness,cold hands and feet,bowel problems,dizzyness,fainting.

7.Symptoms at best:fainting,tiredness,breathlessness, joint pain most of the symptoms above.but i can function a bit better.

8.meds that didn't work:only taken a low dosage beta blocker doesnt work anymore

9.meds that did work; beta blocker worked for a while. drinking water and lots of sleep.

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46, but have been sick for 20 years

wash state

dizzy, very high bp and heart rate, wiggy feeling, heebie jeebies i guess, severe headache, flushing, very cold extremeties, tremors, nausea, occ vomiting, diarrhea, extreme fatigue, chest pain, short of breath, can't stand up more than a few minutes

the above, only not as bad. i do have meneieres, an inner ear disorder, fms, interstitial cystitis, tons of palpitations and runs of psvt. the fatigue never goes away. i have severe reflux and have lost about 50 pounds due to dysmotility. i am trying hard to keep weight on because they will put a feeding tube in me if i lose much more.

everything from ace inhibitors to ca++ channel blockers to beta blockers to anti depressants, you name it i have malignant htn so can't use florinef and things that raise your bp or salt to help retain fluids as it exacerbates htn

i take 2mg of valium 4 times a day for meneires, but am weaning off of it now, slowly. i also take hormone replacement. that's it

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sorry pushed the wrong button somewhere. fog head, guess i failed to mention that.

lately my pulse has been dropping to sixty. it has never been that low in my entire life. i have never been rught since my ablation. now i have arrythmias constantly and these big drops in pulse, but not bp. makes me feel really crummy. i think my sinus node is giving up the ghost. will have to wait and see i guess. that's my story and i'm sticking to it lol morgan

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Blackwolf aka Jennifer Eppe

33yrs old

OH poss POTS, Fibro/cfs, mild depression

OH at 29, fibro at 17

Sioux Falls SD

Lightheaded, fainting, dizzyness, chronic pain, fatigue, trouble sleeping, irregular heartbeat, palps, low Bp, foggy, balance trouble, muscle weakness, muscle tremors and spasms, shortness of breath

most chronic pain meds(ie mobic, celabrix, etc), estragen(all but natural forms),

what I take now: proamatine 5 mgs every 2 to 4 hours, toprol 50mgs once daily, theophylline 150mg(just started this, real energy boost and helps with the palps and shortness of breath)

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No dx yet - app't with neuro on the 16th of this month (not hopeful, though, because dx for 10 years has been "anxiety"...) Symptomatic for over 20 years.

Manchester, NH

Irr. h/b is most distressing symptom - runs of irregularities and PVCs that can last for hours. Dizziness, especially when standing up, chest pain, shortness of breath, tachycardia, bradycardia; fatigue; overproduction of adrenaline; bad intestinal motility; TMJ; headaches; visual disturbances; anxiety/panic, overreaction to external stimuli.

On good days, most of these symptoms are either absent, or mild enough that I can remember enjoying life.

The only meds I've been given are 5 years of Xanax (didn't help symptoms, but relaxed me enough that I could sleep in spite of them), and Lopressor - worked for a couple of days, and then my BP bottomed out. On no meds now.

Some improvement - especially with anxiety/panic - since finding out what the heck has been wrong with me for so many years, and finding this board - the support is so reassuring. I've been taking very good care of myself for several weeks now, as well, ever since my system exploded a couple of months ago: High salt diet/fluid loading; sleeping late; relaxation techniques. Doing nice things for myself, taking quiet time. Most important, lots of talking with God.

And went a couple of shades lighter BLONDE. :rolleyes:

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As always I am writing for my wife so I will give you her information.

1. Stacy

2. 26


4. I think that she was officially diagnosed in April, but she diagnosed herself in 2001

5. Seattle, WA

6. Her symptoms at worst are stomach upset, extreme fatigue to the point of sleeping almost literally all day, passing out, depression, joint pain, and extremely foggy mind

7. At absolute best she is almost normal just still can't take heat at all and gets tired quickly

8. Klonopin, several beta blockers, depression medications, misdiagnosed probably five times so of course things like asthma medication and allergy shots didn't help

9. Florinef, fluids, Adderall has helped some but the doctor won't give her more than 10 mg/day, atenolol, exercise when she can, and moving to the temperate Pacific Northwest.

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one. Kate

two. seventeen

three. POTS, though not technically, they don't really have a name for my "condition", but it's a close relative of POTS.

four. diagnosed at sixteen, the beginnings of the syndrome appeared when I was fourteen

five. town in the middle of farmland and mansions, Maryland

six. at worst, abdominal discomfort/ nausea, headache, anxiety, vomiting 4 times a day, fatigue, "mental fog", and so on , and so forth

seven. at best, all of the above, but only vomiting once a day

eight. stress makes it all worse, all the meds I'm on don't really do much of anything, help or hinder

nine. acupuncture helps some, as does cranial sacral massage, other than that, well it's yet to be seen

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  • 4 weeks later...

1. Name: Cathy

2. Age: 33

3. Diagnosis: No "official" diagnosis - although, I will finally get a TTT on Sept. 2. I pray that I will be properly diagnosed. Partially because I want my family/friends to be able to understand why I feel the way I do, and partially because I believe the next step is to find the cause and work toward the solution.

4. Age when diagnosed: I have struggled with this for too many years. I don't know exactly when my symptoms were thyroid related, and when they were POTS related. After my daughter was born, she's now 13, I lost a lot of weight and was very jittery, fast heartrate, etc..., but never was tested for anything. Then, several months after my first son was born, he's now 9, I experienced many similar symptoms and was diagnosed with postpartum thyroiditis. After he was born, I had three miscarriages, one of which was a partial molar pregnancy with high HCG levels, after that I had extreme symptoms as well. Then, I became pregnant with my youngest son, he's 5, and after he was born I became hyperthyroid. I breastfed him, and he would NOT take a cup or a bottle until he was 13 months old, so my endocrinologist wouldn't give me any medication for it. That time period was probably one of the most difficult in my life. As soon as I was able to wean him, I was retested and my thyroid was normal. I was shocked because I still felt like my heart was racing and I was anxious non-stop and I could barely function! My thyroid eventually went to hypo, but I still felt hyper. (GO FIGURE) Anyway, I have been taking medication for an underactive thyroid for almost four years, and I decided to try SSRIs about three years ago because I was told I had an anxiety disorder. Through much research, I have since decided that it is not just some anxiety disorder. Anyway, I recently discontinued the thyroid medication because of the hyper effects it added. I need to be tested again. (SORRY THIS IS SO LONG - sometimes I guess we just need to vent)

5. Live: Lancaster(Alden), NY (a suburb of Buffalo,NY)

6. Symptoms at worst: Can't think straight, heart racing and pounding, right side of neck throbs and head, sometimes all day long, definitely no stairs, must sleep all day - especially after a day I overdo it, weakness, nausea, difficulty even talking, shortness of breath, low BP, jerking in sleep or near sleep, like I'm going to "jump out of my skin", feel "wired", exhausted, etc...

7. Symptoms at best: Some days I feel like I can take on the world. Feel kinda "normal" but a lot of energy - generally follows by a major down time, oh well. I take those days when they come because it means I can do things with my kids until it hits me. So, I sleep the next day.

8. Meds. that didn't work: I tried Zoloft and Paxil but I didn't like the way they made me feel. I also tried Xanax, but I felt even more tired. I am currently weaning off Effexor XR to go back to Celexa.

9. Meds. that do help: Celexa seems best for me. Temporarily I'm off Levothroid as stated before. I did try Beta blockers for thyroid when it was overactive at some point.(Sorry, sometimes it all seems like a big blur) It seemed to help at times, although my heart rate isn't always fast. Made me more tired sometimes.

10. Just a final note, I will not give up believing that there are answers to be found and that with perseverence, we will find them. This group has INCREDIBLE presistence and determination which will lead to a cure! I thank God to have found everyone here.

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Hey this was a great idea. I am adding my own #10. I feel that knowing what doctor worked for you might help others. I had a heck of a time finding a doctor that did anything for me.


1. Name: Shelby Johnston

2. Age: 23

3. Dx: NCS, NMH, Fibromyalgia,

4. Age at dx.: 17

5. Where you live: Laurens, Iowa (small town 45 minutes from the Okoboji Area)

6. Symptoms at worst: I am homebound when my symptoms are at there worst. I get so weak I have to be carried to bed. My head aches. I get extremely hot. Naueseated. Dizzy. I have palpatation of the heart. I go blank. I can' t think of anything. I get spacy and my skin gets extremely pale. I have had times where I will be sitting and I go to stand and I lose my hearing. I have also had problems like that where I lose my vision.

7. Symptoms at best: I still have headaches and body aches occasionally. My heart does the palpatating things, but not as bad.

8. Medications/treatments, etc. that didn't work for you: effexor, vitamins of any kind, when I was taking a small dose of florinef without the midodrine it didn't work. Then they took me off the florinef and put me on midodrine, and that didn't work either.

9. Medications/treatments, etc., that do work for you: Midodrine and Florinef at same time, Wellbutrin (for depression) Methylphendiate (for concintration in school)

10. Dr. who you found most helpful: I found the Mayo Clinic in Rochester the most helpful. Dr Fealey in the Neuro. Department was a good doctor. I also found that the Fibromyagia clinic there was a good clinic.

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  • 4 weeks later...

here goes!!!

1. Emily

2. 28 (almost 29 ;))

3. POTS and NMH (Neurally Mediated Hypotension)

4. 22

5. Pennsylvania

6. at worst: not completely bedridden, but close...just want to wake up and have it all be over! all the symptoms on the list...extreme fatigue, weakness, dizziness, nausea, chills, sweats, stomach upset, etc. etc. everything under the sun :( my most plaguing symptom other than fatigue has been the fight or flight feeling...even withouth the tachy...i feel like heart is beating so hard it is going to jump out of my chest!

7. at best: feel like i am not in a brain fog, can get up and do some stuff, go to an appt. and not be exhausted. get a good night's sleep, etc. am always, always, fatigued, and even at my best am very limited functioning and mostly homebound. can go for short walks, go to appts., concentrate to read, spend time on computer, etc.

8. oh where to start...sorry is that too negative??? i am refractory! ;)

let's see, off of the top of my head....and this is not going to be a complete list...

welbutrin, provigil, midodrine, florinef, beta-blockers other than corgard, epogen, most anti-depressants (from ssri's to tricyclics, i've tried 'em all), reglan, levsin...that's all i can think of right now...

i have given these meds the "college-try"...

9. corgard, ambien, singulair, allegra, xanax as needed, clonidine (just added it but so far so good), DDAVP, Effexor XR, alesse (continuously with no break for periods)

man, it's hard to sound positive here...sorry! i just haven't found much success...yet...

thanks for starting this thread...it is great, i hope more folks add there info.


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