POTS: What treatment has worked best for you?

[persephone]

I'm not looking for indepth discussion, just a possible list of treatments that could alleviate my tachy and brady episodes and erratic bp....anyone out there found a treatment that has really helped their POTS to the point where they can go back to living like they did before their POTS got real bad?

Thanks in advance guys, you're all awesome

P x x

[steph37822]

oops

[MomtoGiuliana]

For me a low-dose SSRI made a huge difference.

Katherine

[sallyann]

for me lifestyle changes seem to be the most helpful,although i dont think i will ever be back to what i was before dx.

sallyann

[yogini]

What has helped me the most in terms of initially getting back on my feet, getting to work, etc. is definitely atenolol (beta blocker). But I think Sally is right - it's really a combination of the beta blocker + taking really good care of myself, in terms of diet, fluids, salt, rest/not overdoing it and especially EXERCISE, increased over time, which have helped my progress. I am weaning off the atenolol now, and can see even more how important the other stuff is.

[momofpreciousboy]

I am newly diagnosed, but what has helped is :

Beta blocker-helped with pre-syncope symptoms, allows me to sleep-I was running high from all the adrenlin (sp) rush. That really helped with the fear during the episodes.

The compression hoses are a wonder. They help with the chest pressure/pain, neck, and allow me to stay up longer.

Drinking all day.

So far that is all that has helped, my hr is still high.

I have a long ways to go and will update as I see drs.

Jennifer TX

[OCsunshine]

Things that helped me go from "completely bedridden" to "mostly active" are:

MEDS:

-atenolol (beta blocker)

-florinef

-k-dur (potassium to balance the florinef)

-birth control (increases blood volume and raises bp)

-salt tablets

LIFESTYLE:

-compression hose

-drinking LOTS of water, gatorade and juice (not soda)

-keeping my feet up (even when sitting i always sit on my feet or prop them way up)

-rest, rest, rest (it's taken me 11 years and i am still learning to NOT over-do it)

-breathing exercises (when i feel headaches and tension come on, my breathing exercises actually do help me a lot)

-washing my hands and staying away from young children (i attract germs and dont recover well)

one other change I have been able to add into my life is exercise. i can do low-impact exercises and pilates on days i am feeling very well. i wasn't able to add this into my life, though, until i was already "doing better." if i tried being too active or doing exercises when i was still in a "housebound" time, it would make me 'crash' all over again.

Hope this has been helpful- I'm not recommending anything I have listed, I am just telling you what has worked for ME since you asked.

[briarrose]

I would have to agree with the other Steph, Definitely Epogen and IV Iron has given me back most of my energy and life.

Neurontin for the horrible joint pain. Beta-Blocker for tachycardia. Protonix for GERD. A very low dose SSRI. Zofran for nausea. Imitrex for migraines.

I'm sure there are a few other meds that I should be adding but those are the ones that changed my life

[Ernie]

Hi,

Propranolol

Proamatine

Ernie

[taylortotmom]

I have tried various beta blockers, SSRI's, and florinef. Without a doubt, the thing that has been most beneficial for me has been my port-a-cath and daily iv treatments of lactated ringers (1-2 liters daily). This is what has improved my quality of life more than anything else without question. It is an extreme treatment but what a difference it has made in my life!! (I have some degree of normalcy and have some "good" hours which are becoming more frequent.) In addition, when I feel bad I have the control to treat it at home instead of going to the hospital or trying to explain to someone who has no clue why I'm on the floor.

Carmen

[MightyMouse]

SSRI's (Celexa, then switched to Lexapro)

Salty foods & increased fluid intake

consistent, gentle exercise routine

GI meds: glycolax, nexium, and levsin as needed

oxycontin for bone pain

Getting enough sleep (10 hours minimum)

support pantyhose

staying cool

occasionally:

Xanax

Ambien

Flexeril

albuterol rescue inhaler

Things in the past that I'm not on now...but did work for a while:

neurontin

Florinef

Midodrine

liccorice (dgl chewables)

Other meds I currently take:

allergy meds: zyrtec, benedryl, flonase, advair

Meds that did not help] or made things worse:

Welbutrin

Paxil

Luvox

Lupron injections

[lthomas521]

Thiamine, 500 mg per day, plus a garlic capsule to make the thiamine more bioavailable. Thiamine treatment turned me from a pallid, torpid, near-zombie to looking and feeling almost normal. I felt dramatically better within the first 24 hours of my first 300 mg dose of extra thiamine. After a few months, I was able to quit taking Florinef and a beta blocker. My thiamine levels were not low to begin with. If I stop taking the thiamine, I have a noticeable (to other people and to me) decline in my mental functioning within 24 hours.

I also take 800 mg of magnesium every day as magnesium oxide. It seems to help with my energy (you need it to use thiamine properly), but it has completely solved my lifelong problem with slow-transit constipation. (It's a POTS thing, not a lifestyle thing. I had problems with constipation even when I was following a largely vegan, high-fiber diet and getting plenty of exercise.)

I also need to take huge amounts of salt and water and I wear waist-high 30 to 40 mm Hg compression stockings absolutely every day. Licorice seems to help. I have some midodrine, which I take in the mornings when I'm going through a rough stretch (e.g., extended hot weather). I've gotten even better when I added a B-50 capsule (50 mg of each of the B's) plus a total of 800 mcg of folate a day, plus Feosol (iron supplement). Also, I can't skip meals, or I'll crash. Caffeine seems to help.

For migraines, I take an over-the-counter aspirin-acetaminophen-caffeine preparation, and lots of sugar. But it's best to prevent them by avoiding low blood sugar and/or dehydration.

I get hayfever for a few weeks in late winter (probably because of juniper pollen), and that aggravates my POTS tremendously. Antihistamines and cromolyn sodium nasal spray set me to rights.

I have taken Epogen in the past. It restored my red cell mass, but my plasma volume decreased further. My doctor and I decided to stop it because of reports of pure red cell aplasia in some people who were taking a different formulation. I have used Florinef and a beta blocker in the past. The beta blocker is great if you are a piano player. Keeps your hands steady as a rock, no stage fright.

I have hyperadrenergic POTS. I don't seem to have any connective tissue or primary neurologic problem. Mine appears to be metabolic, possibly mitochondrial. The vitamins that help me are things that are routinely given to people with mitochondrial disease. I have had some suspiciously low blood sugar readings in the mornings, along with suspiciously low cortisol, and I feel better quickly if I eat lots of sugar.

[Poohbear]

Well, my answer is a bit odd but I'm not the only oddball out there

I am extremely sensitive to meds. When I was in the hospital the Dr decided he was going to treat me (in terms of medication dosage) as if I was an infant.

I started out taking a liquid suspension of metoprolol. ONE cc every four hours. I'm now taking 1 1/2 to 2 CC's every 6 hours but I often skip the last dose before bed. This has lowered my heart rate some but not so much that I have the bradycardia excessively and it really hasn't affected my BP at all.

Now, most Dr's will tell you this dosage is too small to even begin to work on an adult but it is working for me (in fact, when I got out of the hospital and saw my cardiologist he didn't even know the drug could be written or mixed the way I'm taking it but was willing to keep me on it). It is somewhat of a hassle because it has to be compounded (thus it costs more--I'm paying $35.00 for about a 3 week supply) and it has to be refrigerated so if I want to be gone for a day a have to take a cooler with me. I'm willing to live with that though because it is helping a little.

[dizzygirl]

Well what has helped me the most is increasing my fluid and salt intake..

lots of gatorade

compression hose

BB-Propranolol..

prevacid(for GERD.. but seems to help with the nausea and chest pain that I et.. some of the chest pain is from POTS/tachy. and some of it is from GErD..)

Mestinon.. 120mg 3x's day

eating a healthier diet.. more veggies..

occasional IV's fluid..and oxygen.. WOW!! I feel really good after a treatment of O2 and fluid!

[Rita]

Persephone,

Nice to see your post always enjoy your questions and qoutes. When I am having lots of trouble my doc will send me to outpatient and run a bag of iv fluids. Then along with my florinef, paxil, and midrodrine, he will add a steroid dose pack and valume. I am to take the valume every time I wake up until I can stand without passing. Sleep gives the steroids time to kick in and give my body a little extra boost. I only do this when I am at my worst and can't deal with it any more. I most of the time stay in the bed through this course for a week or more.

Just a liite info to you,

Rita s

[michiganjan]

Have tried the following:

compression hose

beta blockers

calcium channel blockers

paxil

wellbutrin

clonidine

lexapro

DDAVP (hormone to relieve diabetes insipidus-like symptoms)

increase salt intake

regular exercise

What works:

beta blocker works well to lower my standing heart rates

regular exercise (small amount)

Still experimenting with:

lexapro

compression hose

Michigan Jan

Thanks for starting this discussion. Reading what has helped others is really interesting.

[Eli6596]

The things that have helped me:

toprol (a beta blocker)

proamatine

mestinon

salt tablets

lots of water

compression stockings

suppressing my menses with continuous birth control pills

10 hours of sleep per night as much as possible

not letting myself get upset about "little" things

not trying to do everything I want or "need" to do (restraining/limiting/pacing myself)

the best helps:

toprol (got me out of bed!)

proamatine (keeps me out of bed!)

suppressing menses

lots of sleep

Karyn

[Aprilmarie52]

florinef, zoloft and lots of gatorade and salt have made a world of difference for me.

[persephone]

quick q: what's gatorade?

[Eli6596]

Your question makes me realize that we really take a lot of things for granted. There must be everyday things in UK that the US have never heard of too.

Gatorade is a sports drink. It is sold just about everywhere. It is a flavored drink with electrolytes and minerals. It helps to prevent dehydration in athletes, but lots of other people drink it too. It is not as popular as soda.

Karyn

[persephone]

Aha- that sounds like lucozade. Thanks Karyn! I realised what you say about taking things for granted just reading the replies on this thread--I am being offered no treatment exept 1.25mg bi daily and midodrine as and when I need it. Neither of these options work for me But nobody cares...and I'm meant to start at Oxford University four weeks today...

[EarthMother]

What works?

For me it depends on how I am doing.

In a very bad crash (you know, the can't get out of bed POTShole)

Then salt, fluids, compression hose and I always take DDAVP but I'll up the dose on the bad spells.

For more general "maintenance" -- that is if I am doing "well" for me ... then one of the things I think has helped me in the last three months is the recombant bicycle I bought.

I saw a post here on the boards about folks who couldn't stand/walk to excersize but that they were able to sit down, lean back and peddle a bit. So I bought one for $99 and have been using it every day (night actually) since. At first I could do a couple of minutes ( VERY VERY SLOWLY) and then I worked up to 5 minutes a day. Now I can do 10 minutes -- still VERY VERY SLOWLY. But it's ok. It's something, and that's more than I have been able to do in so many years.

Good luck to all and thank you to everyone for sharing what works, it's a good post to look up and review from time to time.

EM

[EarthMother]

You know I just have to add, especially in light of Tearose's post about how she is doing better .... One of the most important factors in my own journey that "works" is when I have a Doctor who BELIEVES in me. One who doesn't discount my symptoms and doesn't file me in the trash of unknown, untreatable, chronic illnesses. If my Doctor is willing to keep in there with me, read all that we each come across and truly believes that I can improve the quality of my life -- then that has always been the best thing that has worked for me!

EM

[Ernie]

EM,

I agree with you. I was with a PCP that did not want to learn about POTS and he was mainly doing the administrative work (disability parking sticker). I appreciate the part that he does for me but he has no initiative to send me to any specialist. So I was with him for 3 years and I barely made progress because I was never sent anywhere (beside my asking for NIH and Vanderbilt!).

I finally changed PCP and now I am seeing some specialist and doing some progress. The best doctor is one that believes in me and himself and believes that I have the capacity to improve.

My best specialist freaked out the first time he saw me faint (at my first visit). He had never heard of POTS. The second time I went to see him he had read on POTS and now he is helping me. He admits that he has no clue has to what to do help me but intuitively he is doing things that are helpful. I hope that he will keep me as his patient.

Ernie

[calypso]

For me, I think the most useful med has been Effexor. It hasn't "cured" me, and it hasn't stopped my elevation in heart rate upon standing, but it did stop the episodes of severe tachy and flushing that I was having. I don't like the side effects of dry mouth and lowered sex drive, but I don't like feeling as if I'm about to drop dead much, either.

Amy