london

Can't tolerate SSRIs at all but I love Wellbutrin. Had no significant side effects when I started it and felt more like "myself"' than I had in a long time. My POTS doc thought it might be contributing to what he considers a "hyperadrenergic component" to my neuropathic POTS so he had me wean off and it was obvious how much it was helping a lot of my POTS symptoms. Before I weaned off I was taking the 150 mg SR- sustained release (different from extended release which I couldn't tolerate, go figure), 1-2 a day. After I started it up again, I am on 75 mg BID and that seems to be adequate.

Hope it helps if you try it.

How did it help? What was the biggest improvement? Did it give you more energy, slow tachycardia...? I'm glad it helped you!

I was unfocused and distractions would keep me up late at night. For the short time I had it I can't say for sure it got my heart rate up but as I remember it felt like my chest was going to explode .

Were you on the extended release? I've heard multiple people say the extended release version affected them this way but not the short acting one. Those side effects are definitely not what I want, but I still want to give it a shot.

I was given this before I was even aware of my symptoms. It had a real bouncing off the wall effect for me. I will say however that any of the ssri's and snri's can affect normal people differently and for all of us with autonomic disruption the effects can really vary, not just person to person but something I've experienced day to day as my symptoms vary wildly. With good advice from your doctor and trial and error and tracking hopefully we find something that helps. As cymbalta helps a lot of fibro patients I had an adverse reaction within two weeks of starting. It is always good to suggest to your doctor any medicines that might help and remind them there is no defined course of treatment its all supportive and if a medicine doesn't help you assert yourself and demand a change. I have talked to so many people that just takes the medicine without any effective change to their symptom. Good luck and I hope this helps you.

What do you mean by "bouncing off the wall" exactly? Jittery, energetic, tachycardic, ect. My fibro isn't bad, but it's the fact that all the "mild" things like depression, almost-fully-controlled-but-not-quite POTS, fibro, and anxiety combined with moderately severe fatigue both mental and physical all adds up to a crap-fest. If I can lessen all or most of these even a little bit the overall effect will be great. I'm mostly worried about sexual side effects because the birth control pills killed my already low libido and took its toll on my relationship (sex and intimacy is very important to us) and weight gain. I have PCOS that has gotten worlds better after losing 60lbs and I worked very, very hard to achieve that. It's not for vanity reasons, but for health reasons.

I've been on Wellbutrin XL 150mg. in the morning for about 6 weeks now for libido, actually, but it has helped in so many ways. There is another posting on this topic on this site, so you may want to check that out, as well. It has not changed my HR or B/P at all. She said I could increase my dose to 300mg, but I was afraid I wouldn't be able to sleep, so I thought the lower dose was enough for me. I only weigh about 103 pounds, though.

I have so much more energy, so I feel more like I used to be before dysautonomia. It's great for me. One of it's contraindications is if you are prone to having seizures. It slows the reuptake of dopamine and norepinephrine, which is supposed to help POTS patients. I find I am able to do more, and think more clearly, too, plus it is helping my desire for my husband's sake. It's a real positive for me.

My ANS doctor suggested it, but I've asked to try certain meds before, and my Primary Care Physician is very open to suggestions, but I am also a retired nurse, so that helps. I even had my GYN prescribe Zofran for motion sickness, so I could travel without having flares. I asked her if she knew of a medication that didn't cause drowsiness for motion sickness, and she said it is usually used for chemotherapy patients. I was even able to go on a boat!!

My Nurse Practioner for my Fibromyalgia told me that he could reorder the Zofran, if I needed more. It also helps with nausea, but can cause constipation, if you are prone to it. It's good to have several doctor's who are willing to reorder as needed meds, so that you are not left without them. My PCP will order mine as well. Usually, if you have been on them before, they will reorder over the phone, unless they are a controlled substance (narcotic).

One time I had a bloody urinary tract infection, and was ordered medication over the phone at 2am from my GYN. (I was doubled over in pain) We have a 24 hour CVS downtown!!

I have great doctors . You should feel comfortable enough with your physician to say that you heard about this medication from some friends with this disorder and she what he/she says. I ask my doctors everything. I go into the office with a list of questions on a pad, if I have a lot of them. Sometimes they say that it's a chemistry question, and she would have to look it up....lol. So I guess I'll ask my pharmacist!! I ask some hard questions. I can't help it; I've always wanted to be a doctor

I'm pre-med, so I'll be a doctor soon My doctors know this and always "teach" me about my condition and talk about the mechanisms about how the medicines work and I ask hard questions as well. I'm afraid though that since I'm pre-med my doctors will think I'm trying to play doctor and speak for them when I have no training I shadow doctors between semesters and "internet diagnoses" are a common pet peeve so I try to avoid that. I'm glad Wellbutrin helped you. I'll bring it up at my next appointment then. I can always stop it if it doesn't help or makes things worse.

I am on just wellburtrin 150mg 2 x a day I take one in the morning and early afternoon. I am not on an SSRI and only take BB and Midodrine as needed. For me wellburtrin has helped with the fatigue it seemed to help give me a boost and I can tell on the days I forget to take it either in the morning or afternoon as I am a little more worn out. I have not noticed it lower/raising BP or a difference in my heart rate just a little more energy and maybe a little more help with concentration.. Does your doctor now about PoTS I know I have brought up things by saying I belong to s support group and have seen that (insert medication) may help with symptoms, what do you think about it? The first trial run I did for it my internist put me on for a month he gave me the option of wellbutrin or Ritalin (gave it too me for CFS he knew nothing about PoTS) I chose wellburtrin as I thought Ritalin might make my HR jump too high. But then after my month ran out I called the internist asking if I needed to see him again, or if he would call in another script, etc and I never heard back. Well then the cardiologist asked what I have been trying with the other doctor and he agreed if I noticed a difference on it then he would refill the script, so I have a 6 month supply called in now. I had tried celexa a SSRI while having symptoms and prior to getting diagnosed as I kept being told I was depressed so I gave in and tried a medication I was on it for a year and did not see any changes with my symptoms and continued getting worse, but I do think for some people SSRI work good both alone or in combination with another medication like Wellbutrin. : )

What type of POTS do you have? I've never been officially tested for a specific type, but hyperpots fits me the closest.

Right now, I'm on 240mg verapamil XR and 5mg midodrine. For the last year or so, I've gotten pretty bad fatigue, fibromyalgia, mild anxiety and mild depression. My grades for this year have dropped because I have no energy or motivation. I'm hesitant to go on SSRI's because of side effects but I've heard Wellbutrin can help lower nor-epinepherine levels as well as counteract the symptoms I listed. Has anyone tried wellbutrin with NO ssri's? Did it lower/ raise BP or help tachycardia at all? How can I bring this up with my doctor without sounding like "telling the doctor what to do?"

Can you all tell me what symptoms of yours the compression stockings help? I have a pair, and tried them last year and just felt weirder with them on.

Do they help increase bp? Decrease tachy? Headaches,nausea, fatigue, OI?

Maybe I would try again but not sure what the benefits can be.

Compression stockings prevent blood from pooling in the legs, which is a major problem in POTS. By keeping the blood out of your legs (by increasing circulation, not cutting off supply) more blood gets to the heart and brain and helps pretty much every symptom of POTS. For me, it increases my blood pressure, deacreases tachy, dreacreasing pretty much every symptom of POTS because this blood pooling is one of the main culprits of POTS symptoms. It has made a huge difference in my life! Also, make sure you get either compression pantyhose or thigh-highs as knee socks do nothing for POTS. The blood just ends up pooling in your thighs instead of the calves. Personally, I can't stand pantyhose so I get thigh-highs.

I am literally squeeling in delight! This is exactly what I was looking for Thank you!!!! The prices are a little high, but sale items are right in my price range. I'm definatly getting these:

http://www.rejuvahealth.com/luxe-lace-thigh-high-648.html

if they get my size back in stock.

I love your user pic, by the way

I've recently discovered the wonders of compression stockings! I was considering bumping up my dosage of verapamil and midodrine until I scored these beauties!

www.amazon.com/Thigh-Compression-Stockings-Medium-Closed/dp/B003Y5YKV8/ref=sr_1_1?ie=UTF8&qid=1359295946&sr=8-1&keywords=thigh+compression+stockings

I would think they would be uncomfortable or I would constantly be aware of them, but this is the first time ever I have been totally unaware of my legs. I guess I never noticed how much the blood pooling iin my legs caused them to swell, ache, and affect my pulse. I don't take them off until I am in bed about to go to sleep and I put them on before I get out of bed in the morning.

I have these, which look like leggings under shirts and shorts. They go all the way up my legs (I'm very short) and I can wear them under the shortest skirts and shorts I want some pretty ones as well. I;m going to buy some sheer black ones next to wear with dressier clothes, but I want some "fun" ones as well, if they exist! Do they make any 20-30mmhg or 30-40mmhg in patterns, tube sock design, white, hot pink/ purple, ect? If so, care to share a link? I've looked everywhere but I can only find beige or black :\ Also, I want some under 30$ or so, my insurance doesn't cover them and I am a broke college kid!

Who told you that you had to stop taking the beta blockers? As long as the allergic reaction wasn't to the beta-blockers themselves, there is no reason that you can't keep taking them, even with an epi-pen perscription.

I have severe allergies, carry multiple epi pens, and am on beta blockers.

A couple of things you should know in general...

Because of the beta-blockers, you MIGHT need more frequent dosing of the epi-pen should you have an allergic reaction. (This is why I carry more than the recommended two doses.)

If the epinephrine is not effective, glucagon can be given in addition. (Glucagon is a hormone produced in the pancreas that is usually given in diabetic emergencies to raise blood sugar. It also works on a pathway that is independent of beta receptors to increase heart rate and blood pressure.)

Of course you need benadryl and steroids too, but those can wait a few minutes.

It might also be helpful to have a medical alert bracelet and/or a wallet card stating that you have BOTH severe allergies and that you take a beta blocker. The wallet card can outline the exact treatment that you should receive. Feel free to PM me for the text that is on mine (and then clear it with your doc).

I also have IST, beta blockers are the only thing that work for me, calcium channel blockers didn't really do much (although verapamil was better than cardizem), and now I take pyridostigmine along with a beta blocker so that I can get away with a slightly lower dose. An ablation is really the last ditch option for me. They have ok (75%) success rates, but more than half of those recur within a year, and a significant portion of those that do have long term 'success' need pacemakers. From what I've read, if IST and POTS occur together, an ablation is not recommended at all.

I was told by my allergist, my pharmacist, and both my cardiologists that beta blockers were a direct contradiction to the epipen and the allergy was a higher priority than the IST (IST isn't lethal, but anaphylaxis without the epipens working and being far from a hospital is.) They lower your pulse and BP, increasing the risk of anaphylatic shock and prevent the epipens from working as well as they should. I live about 20 minutes from the nearest hospital so I can't take any chances with the epipen not working. I already wear a medical alert bracelet and carry a wallet card with all my info on it, though!

What is pyridostigmine? I may bring that up as an option. My doc said we will try verapamil next then wait and see how that plays out first.

I've been off the forum for quite a while and I have made 15 posts total and I want to read through my past ones, but I can only see my past 4 or so when I try to view my posts from my profile. What gives?

For example boosting BP through florinef, midodrine, SSRIs, etc. help may people with high HR.

I do take midodrine and it helps with the low BP caused by the high dose of beta blockers/ calcium channel blockers, but it didn't help the tackycardia at all. My BP only mildly drops upon standing and I take it really only to compensate for the high dose of beta blockers/ calcium channel blockers, it's the heart rate that is my problem. SSRI's are out of the question for me personally as my family has a very bad history with them (suicidal thoughts with them, my cousin took his life because of it.) I couldn't take birth control hormones because they ALL gave me severe depression, so I would rather not risk any med with a high chance of messing with my moods. For me, emotional pain is much worse than physical pain! The more I experiment with meds the more I see BP/ heart rate increase from posture fluctuation isn't my problem, it's the constant high heart rate. I beginning to think I don't have POTS, only IST. I will mention an EP study at my next appointment and go from there!

I met a girl at the gym who had an ablation and she is worse now than she was before

How exactly is she worse? Is the tachycardia worse or what symptoms does she have?

I have two doctors on my "team", my general cardiologist and an electrophysiologist. They both threw the option of an ablation around but only as a last resort when I was first diagnosed, so there was never a serious discussion other than "well there is an ablation but thats only for if the medication doesn't work out." For me, my POTS is either mild or non-existant and the diagnosis was an and/or with POTS and IST, but now it seems to be more IST since my heart rate is high all the time no matter what. I haven't had a serious discussion with either doctor yet (my appointment is in a few days.) I'm sure more testing will be ordered to get a more difinitive diagnosis to find out if it is only IST or IST and POTS.

Might I ask how the doctors can dstinguish between POTS and IST? I had a tilt table where my pulse went from 110 to 150 and by BP dropped from about 120/80 to 100/60 and a 24 hr holter showed my average heart rate was 101 where 95 was the marker for IST. Other than that I have had no other tests. I live far away from the POTS specialists you mentioned, but I go to Pikeville Medical Center in Kentucky and their cardiology department is teamed up with Cleveland Clinic.

I don't think ivabradine is available in the USA, but I'm not sure, and I have no familiarity with it; the only reason I mention it is that it may work in folks who can't tolerate betas.

What is ivabradine? How does it work and could it interfere with an epipen?

Bisoprolol has been keeping my resting heart rate down to about 70, but I discovered I have a severe allergy and need an epi pen and cannot take beta blockers anymore. I'm on the highest dose of a calcium channel blocker (Cardizem) and my resting heart rate is still about 110 and shoots to about 160 if I stand or walk longer than 5-10 minutes. I have pretty bad inappropriate sinus tachycardia with mild POTS that is worsened by the extent of the IST. I'm nervous about the ablation and the posibility of needing a pacemaker after, but if it helps the tachycardia I'm willing to take that risk. Has anyone here had an ablation?

I can totally relate, honey! It's the weather for me. It's been 103 degrees fahrenheit, 100% humidity, and non-stop storms and I can hardly leave the house! I find a (cold) bubble bath works wonders for me. I hope you feel better:)

I know a case of flu or something like that around ovulation time can mess it up for a cycle or two, but I have no idea if chronic tachycardia can mess it up for so long!

I'll get the sparkling grape juice (wine/bubbly substitute), ice water, and arrange for waiters (so getting up and down for refills is not needed!)

I'm so sorry, BellaMia. If I could, I would give you a big hug through the screen. I know what it's like to lost a loved one and wouldn't wish it upon anyone. We all love you and send our best wishes your way.

Thanks! We just finished a horrible thunderstorm here and all day I've had a pounding headache that no amount of coffee or midodrine would cure, nausea, dizziness, and general "bleh".

I've been posting so much, I know! You guys are just so helpful and I don't want a million topics on one thread!

I've had an iffy-kinda borderline diagnosis of polycysitc ovary syndrome for 2 years. I had no other symptoms except having a period maybe once a year, and even then it was anovulatory bleeding. From ages 10 to 16, I think I had 5 or 6 periods total. I lost 50lbs, started metformin, and started heart medications, and the pill all at the same time. Now I am off the pill and have a copper IUD (love it), but I still take metformin to keep cycles regular. So far, they have been pretty consistently 25-35 days. I'm now questioning my PCOS diagnosis. My hormones were a little off, but borderline. I had a few cysts on my ovary, but not the characteristic "string of pearls". Everything was diagnosed on my not having menstrual periods. My new cardio thinks that since my heart rate was consistantly 150-200 and blood pressure was always everywhere, my body just decided babies weren't a good idea anytime soon and shut down the factory. Now that I am on medication and have things decently under control, I am finally what I should be.

Anyone else have no periods?

It's not news that we are in a heat wave in the USA. In eastern KY, it's been non-stop thunderstorm, 100% humidity, and 100+ degree Fahrenheit temperatures. I AM A MESS. Weather changes and heat make my POTS almost unbearable. In fact, the only time I even notice my POTS in winter is before a big snow storm. However, my new electrophysiologist (who deals with POTS patients almost weekly) practically laughed when I mentioned this. "No, POTS will not make you predict the weather, lolol."

WRONG. I have puberty-induced POTS, my mother is pretty sure she had pregnancy-induced POTS (pregnant with me, we are both only children) and has a leaky valve, my grandmother (her mother) and great aunt (grandmother's sister) have SVT. We all flare before a storm. Is this common or is my family just crazy?

Also, do any of you have family with a link of heart problems? I know IST is just different flavor of SVT, and my mother and I both have had POTS (or POTS-like symptoms). My other cardio says it isn't genetic, but this is just too much of a coincidence for me.

My doctor did mention heart rate may play a role by starving my heart of oxygen, thus creating heart attack like pains. BUT, he also said that chest pain is common in both in IST and POTS, so he pretty much told me that he had no idea, just theories.

Say if I have a flu, or sinus infection, or anything along those lines and I can't get my pulse down, should I go the ER? Or should I just pop a beta blocker and wait it out? At what heart rate should I be worried? Also, what about the skipping/extra beats with the lightheadness? When I call my doctor, they tell me to go the ER asap, but my electrophysiologist says it's harmless. What "guidelines" do you guys use for ER trips, since the whole "lightedheadedness, dizziness, chest pains, short of breath, heart rate" thing is a daily happening? What are our "special" guidelines?

THANK YOU! Finding this site has truly been one of the best things that has happened to me in these 2 years. You guys help me so much and I am happy to help any of you in any way I can

Can I be an idiot and ask what IST refers to? I assume Inapropriate Sinus Tachycardia, but want to be sure??

Yep, it's inappropriate sinus tachycardia.

I was getting worried that my sex drive was non-existent at 18, but I blamed it on the POTS and pills. Now that I'm on midodrine, it back and my fiance and I were so thankful! It had been putting a serious strain on our relationship.

Aside from the chest pain I described, I also get a kind that feels like its direct on the heart. It's very, very painfully sharp and only hurts when I inhale which leads me to have to take very shallow breaths and leaves me short of air. There is no trigger (that I can tell) to these pains. Sometimes they happen with pots and ist attacks, and sometimes they come out of no where. Anyone else?

Last thing: I have developed episodes of skipping and missing beats. It leaves me lightheaded, breathless, and my chest hurting. I have discussed this with my doctor and he said as long as my ECHO was normal (it is), then they are harmless and to just pop an extra beta blocker and midodrine. If I call a doctor during an episode of anything, they tell me to call 911. Since this happens pretty often, what should I do? At what point should I go to the ER?

Bring on the coffee! My POTS is noticeably worse if I DON'T have my 2 cups a day. In fact, My doc said 2 cups of strong coffee a day can help to keep BP fluctuations at bay. If my HR gets too high, I just take a beta blocker to compensate. My family starts drinking coffee from the bottle practically (my grandmother but cold, milked coffee in my mom's bottle for real). However, I can totally see how it can hurt some with POTS. We are all different when it comes to treatment.