Who, what, where, when, and why?

[jump]

1) Jump

2) 27

3) POTS, hypothyroid disease, and some general dysautonomia problems that aren't specifically POTS.

4) 27 conclusively, but sort of had a quasi-diagnosis at 24. Symptoms started at 19.

5) North East US

6) So extremely tachycardic when standing that I couldn't stand for more than 10 or 15 minutes at a time. LOTS of weird, irregular heart beats and flip-flops that made me feel really sick and exhausted. Needed at least 12 hours of sleep a night to function. So extremely thirsty all the time that it was painful; polyuria. Lots of gastrointestinal problems and bowel problems similar to IBS but with no rhyme or reason to them. Night sweats and chronic insomnia. Severe chest pain.

7) I still have some tachycardia, especially in the mornings, but it's much less than before (like my hr goes from 50 to 100 instead of 50 to 150). Often no tachycardia in the afternoon or evening. I'm able to stand as much as I want and exercise about 30 or 40 minutes; sometimes with some breathlessness but not enough to make it impossible. Still have the excessive thirst and urination (I drink 3-4 liters of water a day and feel really sick if I don't sip water all the time). Still have severe chest pain, but no longer have the constant weird/irregular heart beats. Still need a lot of sleep, but I can function on much less if I have to (like I can get 7 hours and still work the next day, I just feel like crap. Whereas before I wouldn't have been able to work on 7 hours of sleep). I still have the same GI problems, but when I take the time to "eat right" it's not quite as painful. No more insomnia and the night sweats are much less.

8) Ignoring my complaints and hoping they'll go away!! This didn't help at all. Also, in the beginning, my doctors thought this might be being caused by pneumonia and bronchitis that I had, and the fact that I was thin. They thought if I gained weight and gave my body a few months to recover from the pneumonia then everything would resolve, but both of those things happened with really no change to my ANS problems.

9) I take 25 mg's of a beta blocker and that seems to have really helped with the standing tachycardia and all but cured the irregular heartbeats.

I try to eat 6 small meals a day and that seems to help a little with some of the GI problems, although not entirely.

I try to rest and not push myself too much or get really busy and stressed out. This helps a lot with the thirst, the chest pain, and the GI problems.

I try not to get out of bed before 8 am. This helps with everything. On days when I have to wake up earlier all of my symptoms are worse.

I try not to stand still for very long; I either make sure there's a place for me to sit, or if I really can't sit, then I move around and switch my weight from one foot to the other.

I drink a lot of warm water, coconut juice, and gatorade. My body seems to absorb this better than plain cold tap water.

I do not fly on airplanes unless I absolutely have to.

I really try to speak up for myself and tell people when I need to sit, or find something to drink, or have a snack. I find I can avoid crashes most of the time if I use my voice and take a lot of precautionary care of myself.

I take a daily B complex and a magnesium supplement. I'm not sure how much they help, but they definitely don't hurt. I notice more of an overall improvement with the magnesium.

If I have to do something that I know will make me feel unwell (like if I have to visit a relative and I know it will be a busy weekend full of travel and standing and not eat properly) then I plan ahead and make sure I can have a day or two off afterwards. I know I won't feel well, so I plan for feeling bad instead of having to cancel things last minute.

[ironsc]

1. Cameron!

2. 27

3. POTS, Organic Heart Disease

4. 27, 24 respectively.

5. Colorado!!

6. At Worst: Heart attack (only happened twice), Blindness, sleeping 20/hrs a day.

7. At Best: Mild headache, some GERD, occasional random dizziness.

8. Doing nothing / ignoring it. Anti-depressants, and sleep aids.

9. Beta Blocker, non-amphetamine stimulants.

[blsvlo]

1. Lisa Osborne

2. age 31 when dx and now 33

3. dx. with POTS with Multiple Sclerosis

4. I live in Campbellsville, Ky

[csnell325]

1. Candace

2. 26

3. POTS

4. 25

5. Dayton, OH

and the rest is just about everything under the sun just constantly up and down good and bad days

currently have 3 little boys ages 4, 2, and 6 months and still breastfeeding but symptoms are hard right now because of the breast feeding i can't take a lot of meds right now so for now just a beta blocker low dose which works for right now but has severely bottomed me out to the point of er visit via ambulance and vitamins and water and gatorade

[csnell325]

1. Candace

2. 26

3. POTS

4. 25

5. Dayton, OH

and the rest is just about everything under the sun just constantly up and down good and bad days

currently have 3 little boys ages 4, 2, and 6 months and still breastfeeding but symptoms are hard right now because of the breast feeding i can't take a lot of meds right now so for now just a beta blocker low dose which works for right now but has severely bottomed me out to the point of er visit via ambulance and vitamins and water and gatorade

sorry!! ........and not actually dx with yet that is pending..... have had problems and symptoms since ,y teens just didnt know what it was till recently with in the past year when some family members were dx with it and finally i wasnt crazy and all the puzzle pieces finally came together!!!

[Rene S.]

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. Rene

2. 50

3. hyperadrenergic POTS

4. Age 49 last October when diagnosed.

5. Southampton, PA

6. Bed ridden, B/P too high and have no energy, anxiety, pounding heart, palpitations, headache, chest pains no appetite, dizziness, sick to stomach

7. Able to go out for a short walk, b/p and h/r semi stable which hasn't been recently

8. Clonidine, coregard, coreg, cardizem cd norvasc, paxil, zoloft

9. Haven't found my magical pill yet! Currently taking klonopin, fish oil, coq q-10, magnesium

[Chele]

1. Dana
   
2. 44
   
3. POTS secondary to idiopathic small fiber neuropathy (SFN)
   
4. POTS-42;SFN-35
   
5. Georgia
   
6. stroke like in appearance- extreme fatigue including in face(feels like it is melting), mental confusion, loss of balance, dizziness, slurred speech; these at worst times almost always triggered by being in a loud, busy enviroment
   
7. neuropathic pain all over stongest in abdominal and back areas, dizziness, patchy loss of sensation areas all over body, random sudden intense areas burning and itching, trembling, fatigue, random periodic twitches, constant ringing in ears, heat intolerance, extreme noise sensitivity, nausea, sometimes constipated, need to strain to completely empty bladder, random tingling sensations (like something crawling on me) recently started feeling this on both sides of middle back, recently joint pain, sometimes feel as though running low grade temperature
   
8. dilantin, no longer take amitriptylene and depakote
   
9. neurontin, florinef, wellbutrin, vitamin D, fish oil, benefiber, evening primrose oil (supplement), as much as possible avoiding loud and busy enviroments (instead of attending local church watch live streaming services of a like-minded church where my oldest son currently attends), recumbent bike, drink G-2
   

[Janey]

1. Janey

2. 26

3. POTS, EDS III, Gastroparesis, Intestinal dysmotility

4. 25

5. UK

6. Lightheadedness, migraine, extreme nausea, dizziness, incontinence, tachycardia, vision problems, extreme fatigue, extreme-double jointedness and joint sprains/pain, chest pain

7. Nausea, dizziness

8. Beta Blockers

9. Compazine (for nausea,) Florinef, Salt, walking, anti-histamines

[Rafiki]

1. Name-Debbie

2. Age-51

3. Dx- NCS, POTS, OI, MVP

4. Age at dx.- 51

5. Where you live- Kenya (currently in Birmingham, AL)

6. Symptoms at worst-Bedridden for 3 months, extreme dizziness, feeling like on verge of fainting every time I stand up, BP bottoms out when standing, hr increases 30-60 points standing, loss of balance, chest pain, short of breath, fatigue. Unable to stand more than 5-10 minutes. Unable to sit for 20 minutes.

7. Symptoms at best- Able to do normal activities for most of day with medication. Some breathlessness and lightheaded occasionally. BP and HR changes not as dramatic, occasional mild chest pain. Able to shop for an hour or so at a time. Able to sit for several hours or longer.

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

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

[APierpoint]

April

26

POTS and Inappropriate Sinus Tachycardia with Pacemaker

26

Mountains of NC

Junctional Tachycardia, Lightheadedness, Nausea, weakness, sweaty

Fall asleep fast,

All Beta Blocker (made me depressed, didn't help much, and lost weight), Verapamil, Ace inhibitors

So far Wellbutrin XL and Mestinon (That Dr. Grubb put me on). Still can't control Junctional Tachycardia.

Thanks!

[potsgirl]

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. Jana

2. 47

3. POTS/OI, cardiomyopathy, diastolic dysfunction (possible amyloidosis), migraines, vulvudynia (chronic pain in vaginal area)

4. 44

5. Tucson, AZ

6. Extreme fatigue, dizziness, syncope, very low BP, migraines, tremor, severe shortness of breath, loss of coordination, brain fog, GI track issues - wheelchair

7. Fatigue, headache, shortness of breath, GI track issues - can get out and walk and perhaps do a short errand, brain fog - no wheelchair

8. Cannot tolerate Midodrine or Florinef. Cannot take BB, any heart med that lowers BP

9. Paxil, Xanax, Klonopin, small doses of Percocet when really necessary. Water, salt, yada, yada...Nuun hydration tabs

Cheers,

J