starry16

Hi all!

When I have a flare up I notice that I am often woken up in the morning (at an hour before when I normally wake up) by a high heart rate/pounding heart (nothing crazy - usually in the high 80's or 90's, but way above my resting, which is in the low 60's), even though I've been laying down for 7-8 hours. Does anyone else get this? It makes no sense to me...unless it has to do with catecholamine peaks at that hour, as someone above mentioned. Very odd, and very uncomfortable, especially because high HR's ALWAYS come with PVC's for me...ugh.

Hi there,

I also vote for starting at a lower dose. Why not just call your doctor and ask him to change the prescription. I don't think you should wait another month just for that! The side effects for me were not that bad at a small dose - I could definitely get through the day, even the first week I was taking it. I'd really encourage you to give it a try!

Jbrian, I can't say that I follow that logic...if Cymbalta overrides the NET protein and prevents reuptake of norepi, doesn't it also make more of it available? And wouldn't that have the same effect as excess norepi spillover?

I am really really glad to hear that it has helped some people though. These posts were very encouraging the other day when I signed on while feeling super nauseous due to side effects! I'm on day 6 of it (20 mg) and working through side effects. For those of you that it helped, may I ask what dosage you are one and how long it took before you felt some positive effect?

Thanks to all!

Cymbalta works on the reuptake of serotonin and norepinephrine neurotransmitters, while regular SSRIs only prevent reuptake of serotonin (primarily). Norepinephrine is a vasoconstrictor (so it can raise bp) and it is also a hormone that speeds up the heart rate in the "fight or flight" response. One possible cause of POTS is a deficiency in the norepinephrine electron transporter (NET) protein, causing excess norepinephrine to spill over into the synaptic nerve, causing an increase in heart rate upon standing or postural changes. Cymbalta, as to my understanding, overrides this NET protein in order to prevent reuptake, so the excess spillover is reduced.

While on cymbalta I have noticed an improvement in the severerity of how high my heart rate would jump after a postural change. It also helps with anxiety/depression, which can exacerbate symptoms.

Anyway, this is my hypothesis on why cymbalta can be helpful.

Congratulations! Keep up the good work!

But remember that with POTS, as with other things, slow and steady wins the race!

Just wanted to lend a note of support. I struggle with this too - especially back when I didn't know I even had POTS and that it could cause chest pain. but yes - is there a wolf or isn't there? A hard decision. I guess it's better safe than sorry, but given insurance issues, the ambulance/ER can be a bit of a crazy solution! Perhaps a middle ground would be to get thee to an emergency room and then sit outside - if you feel worse, you go in, if it passes, you go home!

I know it sounds crazy, but hey, whatever works..

Tearose,

I was recently trying to find a dysautonomia support group in the NYC-area and there isn't one, so perhaps people would even travel up to you (I might!)

Allison

There just may be others living with POTS nearby! We will see.

The planning meeting is tomorrow and it is for those who don't need therapy, just support of others living and managing with a chronic illness.

I think there is a great need for a group like this. Not focused on the illness per se, rather, focused on the strength and compassion we have had to learn to use to adapt and move forward with grace, dignity and respect.

I'll keep you posted.

tearose

Hi all,

Just wondering for those of you taking Cymbalta, whether it was prescribed for the POTS symptoms (tachy, fainting, low BP, etc) or for nerve/fibro pain? It seems like its prescribed frequently, and I've seen many references to folks having it prescribed by Dr. Grubb or Bev (and them saying they've had a lot of success with it), but am not sure whether it's so popular because of the pain stuff or the other POTS stuff.

Would really appreciate hearing why it was prescribed for you (esp. if it was from Grubb/Bev/Low etc).

Thanks!

Thanks to all who responded. Hopefully more people will chime in! It's really confusing to know what dose will help with these because all of the doses quoted out there are for depression, not POTS.

Lois, that's really interesting about what Dr. Low said because that's a very high dose, but the doses I just read about in Dr. Grubb's most recent article for Cymbalta and Lexapro are quite low (less than the normal "therapeutic" depression dose). I wonder why the Zoloft one would be so much higher. That actually makes me think that it might be better for me to go with one of the other ones. Since I tolerate SSRI's so poorly, I can't imagine that I'd ever get to that high a dose of Zoloft!

I have been taking Zoloft for about 8 years. I started with a smal dose, and then very slowly worked up to 250 mg. I take it in the morning. Zoloft helps with the POTS, especially migraine headaches.

Dr. Low told me that 250 mg is the dose actually needed by most people when taking Zoloft for POTS. My intern had been worried about the massive amount.

I hope that this is helpful.

Lois

Hi all,

I know there have been many posts about SSRI's/SSNRI's (and I think I've read all of them), but was wondering if people could share their experiences on doses.

Basically, I'm trying to decide which one to go with. I've taken both lex and cym in the past, but when my POTS symptoms were not as bad, so I don't know how much they'd help now. For both, the side effects were a problem (though tolerable), but my doctors were pushing me to go to a higher dose and I wonder whether a lower dose for a longer time would be more effective with POTS.

So I'm wondering what kinds of doses people have found to be effective for each of these?

Thanks!

P.S.: My doctor mentioned a study about using Zoloft with POTS people, but I've not found it. If you have, could you pass along or direct me?

I can also relate to all the dizziness. For a long time I thought that it wasn't the POTS causing it because I know what it's like to be lightheaded like I'm about to faint, and this dizziness felt different (though definitely still distinct from vertigo-like spinning). I insisted (and my doctor at the time agreed, since he knew nothing about POTS) that it couldn't be fainting or POTS related because my BP was normal. I was mis-diagnosed with BPPV and did vestibular rehab which (for me) was a waste of time and money because it was the POTS causing the problem.

I think the last part of what you describe is most likely what is going on. I have asked my doc about this numerous times (he's a POTS specialist) and he says that this is a disorder of blood flow disregulation - so whether due to pooling or just improper regulation, blood is not in the right places at the right times, including in the head, thus causing dizziness.

I'm sure it's possible that you have a co-existing vestibular disorder, but don't underestimate POTS' ability to make you feel this way...

Paradoxically (perhaps) I have found that doing some exercise while I am dizzy like that (i.e., not sitting down and waiting it out) can make me feel better.

Good luck!

I wonder whether it would be possible to do a dysautonomia support group? it seems like there would be enough people...

I'm going to help get a group off the ground!

Somewhere in-between living with chronic illness and not sharing, and sharing only with a therapist is where some people live.

I know people with POTS, Lupus, MS...who like me, share the need to air some of our issues and bounce them around with others trying to live in balance. There just aren't enough people with only POTS to do a group.

I think having a medical person come to visit would be great because of what you folks have shared about the benefits of your experiences with a therapist. So too, other guest speakers will benefit our discussions.

I would love to hear what other support groups are doing and I will keep you posted as things progress.

best regards,

tearose

I have this too, off an on (a month or two of extreme hunger and then it tapers off). I can't ignore it - I'm really that hungry. It *****!

I'm not on an SSRI, but may try one soon..

I tried it for fatigue and it was not good for me because it increased tachycardia and shortness of breath. It also made me quite nauseous and perhaps even more orthostatic intolerant.

It's amazing how consistent the answers are so far. I've received the most help from forums. Though I have found Dr. Stewart at NYMC (adolescent POTS specialist) to be helpful in diagnosis, I still have no effective treatment.

Does anyone here with POTS still run? I'm very curious..I'd like to be able to, but it seems out of reach!

I think I've responded to a post like this before too, but I have the same effect with midodrine. When I started wtih 2.5 it brought my hr down minus 10 from normal, then 5 mg it was minus 15 or more (from 68 resting down to low 50's). Then it evened out and got a bit higher. But everytime I upped again (now at a little over 10 mg-I'm a big pill cutter), it goes down again (incl into the upper 40's) before bouncing back to mid 50's after a few days at the new dose. Hasn't been a problem for me - at least it shows that the medicine is doing SOMETHING, since it's yet to do anything to my BP!

I asked my doc about it and he said it's just the reflex bradycardia and shouldn't be a prob unless it goes much below 50 or I start feeling bad. Hope this helps...

Hm - have never heard of it - what does it do?

Thanks Flop!! That is really helpful information. I love how I spent 6 weeks on florinef and didn't supplement with salt because my doctor categorically told me it was unnecessary! What a waste!!

I just looked back at my blood work and there are two measures listed under 24 hr urine sodium. It's very confusing, but I'm well under the 170 either way. It says:

sodium, urine: 34, reference range 28-272

sodium, 24 hour urine: 94, reference range 52-380

I guess the second one is the relevant one.

Thanks again for the info. If you by chance had a link or knew where to find that article with the sodium numbers, I'd really appreciate that too.

I focus on the fact that it has always passed in the past and will pass eventually.

Definitely made my HR go down quite a bit. Resting is frequently in low 50's (and at night in mid to high 40's) when before it was high 60's. I'm on 7.5 mg. It doens't seem to do anything to my BP.

Flop, can you explain the 170 mmol number? Is that the bottom of a normal range, or is it more of an ideal number?

I was told salt supplementation didn't matter if on florinef, and I gave up on florinef b/c it didn't seem to be working. Now I'm wondering if I should try again with salt!