artsystacey

Yay, Sarah! That's how I started. On midrodrine & propranolol. It felt like I had let go of a 100lb weight I was dragging with me every day. I began to slowly exercise and now I'm weaned off the meds. Now, just light-moderate exercise, lots of water/salt, compression stockings, little to no alcohol or caffeine and not stressing too much in general helps keep me at least functional. Oh, and not getting my period helps, too.

For me, stress makes it way worse. I think part of it is trying to do too much for what your body can do and being frustrated. I've had to let go of a lot of things I "used" to be able to do in order to feel somewhat functional. It's helped me actually move forward a bit in life to recognize the limitations and work around them.

I grew 6 inches in a summer age 9/10 - I started getting symptoms after that. I was so exhausted I'd almost pass out during class and I couldn't remember anything. Vision would black out several times a day and I didn't realize it was presyncope - I just thought that happened to people sometimes. I also have some stretchy skin and hypermobile joints, but I was never diagnosed/tested for ED.

Depends on how mobile you are, but I find if I sit too long, my blood pressure drops low low low. If you can, get up and walk around, and get your blood flowing. That helps a bunch. If you can tolerate caffeine (I can only in small doses), it may help a little. Also, I've found compression stockings help me when I'm sitting for long periods of time. Hydrate, eat more salt, etc.

Don't know if this helps, but I'm so sensitive to medications that I didn't even want to try ADD meds. Been down that road before with SSRI's and it was a horrible experience for me.

I found this interesting article explaining why more women than men experience certain arrhythmias. It also mentions POTS - super interesting read as I have SVT & POTS (though my POTS symptoms have gotten 80% better through my lifestyle changes and exercise over the years)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3066817/

Something of note for me personally was talking about how rising progesterone and falling estrogen during the menstrual cycle contributes to the symptoms more (definitely can confirm that!). This says that progesterone plays a big role in your cardiac electrophysiology. I've been on the depo shot, which is pure progesterone and makes you not have a cycle. I feel so much better on it.

Anyway, would love to know everyone's thoughts.

Hi Trisha, I'm glad you're seeing a doctor about this. I just want to say I've had that sensation before and it seems to happen when my adrenaline spikes, trying to raise my blood pressure - it brings on panic attack like symptoms for me and I get these rushes of electricity in my limbs and then they go numb.

Yes, I can totally relate to the eyesight thing. Blurred vision and spots and zig zag lines. Sometimes I see things that look like floaters but they pulse in time with my heart beat. Also I'm very sensitive to bright lights or light changes.

I think sometimes people with dysautonomia go through periods of worsening and changing symptoms - I'm not sure what it could be for you, but I've had very high and low heart rate readings. Your blood pressure dropping in conjunction with your heart rate dropping is usually neurocardiogenic syncope (which I have) - but of course, I'm not a doctor! With NCS/POTS alcohol makes me much much worse since it lowers my blood pressure more and increases my heart rate. I wonder with EDS, perhaps you have some narrow vessels that's causing poor circulation.

Just speculation on my part, but I hope you're feeling better soon!

Personally SSRIs gave me the worst reaction. I have never had a panic attack before and i had my first one after taking the first dose. It felt like I wanted to rip my clothes off, like I wasn't in my own body and that electricity was going through my arms and legs. I then proceeded to shake violently all night long and have multiple panic attacks over and over until the drug left my system. I then needed to mentally get over the fear of more panic attacks because being afraid of them started bringing it on. Needless to say - it was one of the worst reactions I've had to a medication. It could do wonders for you, but it really messed with my chemical balance in a bad way.

I use Elete Electrolytes in the citrus flavor. It's liquid electrolyte drops - all you need is a few drops since it's highly concentrated. No sugar or anything.

I think CBT was somewhat beneficial to me, but I stopped going after a while. I'm now reading a book on ADHD and trying to apply that to my cognitive strategy since it's said a lot of POTS patients have cognitive symptoms similar to ADHD.

Any ist and svt I had was brought on with the pots. I've found I can manage it by the things that affect me and eliminate these things. I don't eat gluten (if I do it shoots straight up) lifting weights, no chemically made vitamins, staying hydrated, eating red meat everyday, are the biggest things. My resting heart rate right now is 55bpm and that's right where I like it.

Hey Lewis, my EP seems to think dysautonomia and SVT are unrelated - have your doctors told you otherwise? I feel like POTS feeds into my SVT.

Soo, I have accidentally fallen asleep with one of my arms overhead a few times in the past. Every single time this happens I get a huge adrenaline surge while sleeping and a racing heart and being drenched in sweat. Was wondering if anyone else experienced something similar? Also, every night I need to toss and turn at just the right angle so I can't feel my heart fluttering in my chest when sleeping. If it gets really bad I down a bunch of water and put my feet up and that seems to to the trick.

Anyone have any sleep tricks they care to share? Would love to hear your experiences.

I'm not sure if I have EDS but I was always told that my veins tend to bunch up when they put an IV in me. Is that a symptom? They once stuck me like 10 times and couldn't get it to work. I wanted to be like "Ookay that's enough!" Since it became super painful. I was about to punch the nurse - lol.

After exercise I see zig zaggy lines in my vision and seem disconnected with my body. My vision is blurry and sometimes tunnel visioned. I usually feel like that for half the day, and if I overdid it, exhaustion hits me like a ton of bricks and it feels like I've been hit by a bus.

I get similar with my eyes everytime I go for a hike. My vision pulses when I'm done.

Ooh yes I get that too! And ringing in the ears and hearing my heart beat.

I have POTS & SVT - dunno is SVT is classified separately or not so I'm not sure.

After exercise I see zig zaggy lines in my vision and seem disconnected with my body. My vision is blurry and sometimes tunnel visioned. I usually feel like that for half the day, and if I overdid it, exhaustion hits me like a ton of bricks and it feels like I've been hit by a bus.

Hi Faye,

I discontinued beta blockers because while it controlled my HR, my BP was too low and my HR was 30 while I was laying flat. I also used to be on Midodrine, which made my hairs stand on end and gave me hot flashes. I'm now medication free and just manage my symptoms day by day. When I first stopped the beta blockers my BP was quite high, almost as if my body was confused and adjusting, but now it's back to normal.

You may already know these tricks/tips, but these are the things that have helped me tremendously:

• Consistent light to moderate exercise (I had to work up to this - I started off in the pool)
• Drinking 3 liters of water a day, in combination with electrolytes
• Increasing salt intake
• Wearing compression stockings, especially if I'm going to be on my feet a while or sitting for a long period of time
• Meditation and light yoga
• Smaller meals throughout the day
• Not eating carb heavy meals

Hope this helps.

Hi everyone!

It's my first topic on this forum. I have NCS, POTS & SVT. I was curious about other's experiences with birth control and their symptoms? I recently was taken off the pill because it was determined that migraines are a contraindication for anything containing estrogen, and a blood test also revealed a possible blood clot that was never found. So, I'm now on progesterone only BC in the form of Depo Provera - and it seems like it has made a BIG difference in my symptoms! I have a lot less heart racing and less hypotension all around - I'd say a 50-75% (depending on the day) reduction in symptoms. Right now I'm due for a new shot and I can feel the hormones waning - my heart is racing easily and I have more orthostatic hypotension.

Just curious if anyone else had good/bad reactions from birth control meds?

Hi there,

I experience very similar "attacks", and like you I have had them at night and during the day.

Despite living with them for over five years, they still scare the **** out of me. The symptoms you described are almost identical to mine - it starts out with chest discomfort (sharp pains or dull ache over left side of chest), palpitations, and then I feel nauseas, dizzy, and weak. My bowels also go berserk and I need to empty my bladder a lot until I'm passing clear liquid. My face goes pale, or I become sweaty and flushed. Basically my whole body goes into shock - I tremble quite violently, my hands and feet are icy cold, and in the moment it feels like I'm dying. Sounds dramatic I know, but it's as if multiple systems in my body are melting down together. Thankfully, like you the episodes only last 20 to 45 minutes. Although without a beta blocker onboard my resting heart rate can stay up at 120 - 140 for a couple of days.

I feel incredibly washed out after the "attacks" - and after particularly bad episodes my limbs will feel weak and achy for 3 to 7 days.

At first, I thought I must be having panic attacks, but after winding up in hospital in 2011, doctors immediately ruled this out. I was misdiagnosed with SVT (faulty wire in my heart) and they recommended an ablation. But this didn't sit right with me, as my cardiologist was ignoring some of the symptoms that were worrying me the most - weakness, brain fog etc. I said 'No' to the ablation.

Thankfully in March 2013, I ended up meeting an amazing Professor of Cardiology when I was in emergency again at a different hospital. He ordered a number of tests and arranged for me to see a neurologist and I was diagnosed with POTS.

I've tried to work out possible triggers, for me I think the attacks could be related to my:

- Menstrual cycle

- Dehydration

- Over exertion

The night time attacks are particularly bad and luckily rare. Chest pain will wake me from my sleep at around 2am/3am and the cascade of symptoms will begin. It's frightening but I know I just need to ride them out at home. When I'm having an attack, I ask my husband to tell me, 'you're not going to die, and you don't need to go to hospital.' I just need to hear it.

My cardiologist thinks it is an autonomic discharge of some sort. I recently weaned off my beta-blocker (Metoprolol) and only now take it when needed as I'm planning to get pregnant, which is a bit daunting!

His possible theories for the chest pain (the scariest symptom) - small veins constricting in my heart like they do in my hands, maybe coronary spasms. It's hard to know...but he doesn't think it's sinister. The fact that I've lived through so many attacks should give me confidence

I used to have horrific stomach pain too, but since eliminating gluten strictly from my diet for over two years my digestion has improved greatly.

I'm also going to put it out there in case someone on this forum has experienced something similar, that my blood test results in hospital last year showed up with elevated serotonin (just outside normal limit), which resulted in more tests for possible carcinoids. This was ruled out as the serotonin levels returned to normal six months later. Huge relief! I also have mild hyper mobility but they ruled out EDS Type 3.

I'd love to know how you cope with these "attacks" mgr268. I get a bit teary after them, but push myself to continue on with my daily activities and lead a full life.

Thank you for putting up your post - I don't feel so alone.

Hey Angie - I am diagnosed with generalized dysautonomia and I was recently diagnosed with SVT. They are wanting an ablation, but I'm afraid I could have POTS which ablations are contraindicated for. Do you know if POTS can cause SVT?

Hi there! I was just diagnosed with SVT. I cannot tolerate BB or CCBs - they make everything worse. They are recommending an ablation, but I'm unsure what kind of dysautonomia I have. There's been horror stories with autonomic dysfunction patients getting worse or needing a pacemaker after an ablation. For now, I'm waiting for an appointment at Vanderbilt to get a second option before I go for surgery. :|

Did they tell you what kind of SVT you have? I got mine caught on an EKG in the ambulance but apparently those get thrown away most times. I'm soo mad. I was like "YES! Finally someone caught it!"

I'm wondering if POTS can somehow cause SVT?