Does That Mean That I Don't Have Pots?

[cma]

Hello.

I know that some of you have a deeper understanding in this complex illness.

I have started Lexapro almost a week ago and my heart rate has dropped down a lot, in fact I don't have 30bpm increase going from supine to standing or standing for a prolonged time.

Does that mean that I don't have POTS? Is it just anxiety? I'm quite confused.

Thank you.

[abbyw]

Hi cma,

If you look at my post of "2 docs saying its anxiety...", I sort of have the same question. When on the SSRI, I am ALMOST normal. Does that mean that it isn't POTS or that the SSRI is keeping the POTS under control?

I don't know the answer to that.

Thanks,

Abby

[bebe127]

So wish I could take SSRI's if it would help! I was put on Celexa and didn't last a week. Had terrible reaction...felt sick to stomach, ran to bathroom, literally rolled off toilet onto the floor and felt like I was going to pass out. Hubs came in and I was drenched in sweat, even my palms were dripping. He had to pick me up and put me on the bed where I felt as if electricity was running through me. I even asked if hubs could feel it (of course he couldn't). Called dr. only for him to say stop taking it and begin in a few days at half dose. Did as was told, but still made me feel worse. Then at my follow up (I'd stopped taking it altogether by then) he told me he couldn't help me and suggested I see a therapist! This was supposedly a specialist in POTS.

Is it that I didn't give it enough time? I know I've read that one might need to be on it for a while before seeing any benefits. What I wouldn't give to feel halfway normal!

[cma]

Hi cma,

If you look at my post of "2 docs saying its anxiety...", I sort of have the same question. When on the SSRI, I am ALMOST normal. Does that mean that it isn't POTS or that the SSRI is keeping the POTS under control?

I don't know the answer to that.

Thanks,

Abby

Hi abbyw,

Read your post. Congratulations on your pregnancy!

I have a 6 month old and was pregnant with POTS, so if you have any questions you are welcome to PM me.

I live in Ireland and doctors are not very knowledgeable in POTS area here as either. I've resisted SSRI's for a long time, but it lookd that they are helping somewhat. I'm still feeling lightheaded and fatigued, but I'm just starting on the meds and haven't increased to the required dose, so we'll see how that will go. I just wish that we didn't have to waste our time searching for answers, POTS takes enough of energy from us to begin with. But reality is different.

[Altruism]

hI cma,

I have pregnancy-induced POTS too and have a 3 month old baby. I just started Zoloft and I'm praying for it to improve my POTS. I have a million of questions for you:

1. Did you develop POTS during pregnancy?

2. How were you doing immediately postpartum? I'm bedridden on most days.

3. Do you get adrenaline surges/panic attacks? Mine are the SCARIEST in the world, absolutely unbearable!

4. What dose of SSRI are you taking? Did it take just a week for you to see your HR go down?

In answer to your question - you could have POTS that is regulated by SSRIs that regulate chemicals in the brain. If more serotonin = less NE, then you have POTS that is perfectly controlled with SSRI. I hope I'm one of you too!!!!

[cma]

So wish I could take SSRI's if it would help! I was put on Celexa and didn't last a week. Had terrible reaction...felt sick to stomach, ran to bathroom, literally rolled off toilet onto the floor and felt like I was going to pass out. Hubs came in and I was drenched in sweat, even my palms were dripping. He had to pick me up and put me on the bed where I felt as if electricity was running through me. I even asked if hubs could feel it (of course he couldn't). Called dr. only for him to say stop taking it and begin in a few days at half dose. Did as was told, but still made me feel worse. Then at my follow up (I'd stopped taking it altogether by then) he told me he couldn't help me and suggested I see a therapist! This was supposedly a specialist in POTS.

Is it that I didn't give it enough time? I know I've read that one might need to be on it for a while before seeing any benefits. What I wouldn't give to feel halfway normal!

Hi bebe127. Well, I don't have medical background, so I don't know, if you should have given it more time. I can only share my experience. I'm on Lexapro 5mg, once a day. I'm taking them at night, on the first morning I felt terrible, sweaty, nauseous, very anxious etc. Now I only occasionally get nauseous. I'm on beta blockers as well, tiny dose, I don't think I could have done SSRI without beta blockers, because in the morning I'm still feeling very anxious. I don't think that I'm cured or anything, I still don't feel like my old self, but my heart rate is definitely lower.

[Guest Alex]

cma,

Do you think your dr may be willing to read some published research on POTS not being the same as anxiety?

Here is an article stating that the hr increase in response to the orthostatic stress in POTS is not caused by anxiety.

jap.psychology.org/content/102/3/896.full

Could it be that the medication you are taking is keeping things under control for you?

One way to find out would be to come off the meds and have a tilt table test, but this is your decision.

bebe,

I'm sure I'm not telling you anything you haven't heard before, but there are many other meds that can be prescribed for POTS and if you had a bad rxn to one, that doesn't mean there aren't others you could respond positively to. If your specialist is of a different opinion, maybe you can find another dr that is more open minded, willing to learn and willing to help you.

Lots of times we have to try many meds and see lots of drs till we find the perfect combo allowing us to regain our quality of life. I'm still looking, 1 year after being diagnosed... Just don't give up.

Best,

Alex

[bebe127]

Thanks Alex.

I don't see that particular "specialist" anymore. Only saw his twice and the second time (follow up) was when he stated that I should consider a therapist. He didn't even suggest any other SSRI's and didn't explain anything to me when I saw him. After he prescribed Celexa, I specifically asked what I should expect, he told me "nothing, you'll just feel like your old self." When I called him on the Sun. morning after I'd recovered from the bathroom floor incident, he just told me to stop, then take it at half dose. When that didn't seem to work, I spoke with his PA and she said that if the dr. wanted to prescribe something different that he would call...he never did. The next time I saw him, some four months later was for the follow up.

I should ask my GP, who treats me now, if there is something else out there that might help. I'm just completely TERRIFIED to try another SSRI for fear that it will have the same affect.

I'm 3+ years out and will not stop until I find someone to help me!

Sorry if I'm piggybacking...

Hope you get some answers cma

[abbyw]

Hi bebe,

When I said I had a hard time starting up, what you described is NOT what I meant!

I had horrible tachy, feeling freezing, nauseous, and a totally out of it and sick feeling. I also needed a benzo just to live. But not what you had.

I hope you find someone/something that helps soon.

alex - not sure if your approach would help resolve the question. If it is anxiety as opposed to POTs, then coming off the meds would bring back the symptoms, but we wouldn't know if they were POTS or anxiety.

Thanks,

Abby

[Chaos]

I think that the med is just helping your symptoms but it doesn't mean that you didn't have POTS. Kind of like when I lost 20 pounds from GI problems and started wellbutrin and some of the GI symptoms improved. I mentioned it to the GI doc and he said "I don't for a minute believe that this was because you were depressed or anxious. But, there ARE a lot of the same neuro transmitters in the gut that you have in the brain so what you do to affect one will have affects elsewhere."

I think that there is a reason that SSRIs and SNRIs are used to treat POTS and have been found to be effective. But as the article's posted above by Alex show, it doesn't mean that we're all depressed and anxious and that's why they work.

I'm glad you have found something that helps your symptoms. That's the main thing!

[Akgirl]

I think if you responded so well to the ssi that's great!! I was on celexa 40 mg a day when I was diagnosed with pots. So obviously didn't work on me, but now I am on a steroid and beta blocker as well as the celexa and am feeling better. So I think the trick is everyone has a unique combo that works for them! As far as wondering if you have pots anymore, I think you just found meds that work for you!! Yaaah!!

[Guest Alex]

Abby,

what i meant is that the ttt is the golden standard for diagnosing POTS and you can only have reliable, meaningful results from such a test if you are meds free, and yes, I agree with you that coming off the meds would bring back the symptoms.

A well versed dr should be able to distinguish between anxiety and orthostatic changes of your vitals during a tilt test...or maybe not?! Can there be an overlap of symptoms? Definitely, that's why - I think - so many of us have been dismissed as having anxiety by so many drs.

Now in all honesty, if you found the meds that work for you, and by taking them you are asymptomatic, and you have no or manageable side effects, I'd have to say that you are one of the lucky ones.

Alex

[corina]

I've never experienced anxiety, still the ssri works for me. It keeps my hr down but that doesn't fix all my other dys problems. My doc explained to me that the ssri works on neurotransmitters (sorry can't explain due to brain fog)

[cma]

I've never experienced anxiety, still the ssri works for me. It keeps my hr down but that doesn't fix all my other dys problems. My doc explained to me that the ssri works on neurotransmitters (sorry can't explain due to brain fog)

Hi corina,

do you still have the 30bpm in crease in hr after standing 10mins? what other dysautonomia symptoms do you have, if you don't mind sharing?

[cma]

hI cma,

I have pregnancy-induced POTS too and have a 3 month old baby. I just started Zoloft and I'm praying for it to improve my POTS. I have a million of questions for you:

1. Did you develop POTS during pregnancy?

2. How were you doing immediately postpartum? I'm bedridden on most days.

3. Do you get adrenaline surges/panic attacks? Mine are the SCARIEST in the world, absolutely unbearable!

4. What dose of SSRI are you taking? Did it take just a week for you to see your HR go down?

In answer to your question - you could have POTS that is regulated by SSRIs that regulate chemicals in the brain. If more serotonin = less NE, then you have POTS that is perfectly controlled with SSRI. I hope I'm one of you too!!!!

Hey,

Congratulations on your baby !

I'm so sorry that you are feeling so bad. I know it's breaking your heart to not be able to take care of your lil one. I really hope that it will get better for you very soon.

Are you on any other kind of meds except Zoloft?

Here are answers to your questions:

1. I did not, I had POTS before pregnancy, it's been 5 years in November since all this madness started

2. I was very weak after delivery, because I've lost a lot of blood and was anemic. My POTS wasn't that bad, I was still able to breastfeed my lil one and to do basic stuff. On most days my standing heart rate was 120bpm, but I've pushed myself and didn't let myself just to stay in bed. I'm not saying that this is what you should do. I don't know for how long you've had POTS and if you are a fainter. I'm not, but I've noticed that if I move around I'm feeling a lot better than just staying in bed. I know it's very hard, believe me, I had days in the past, when I felt so weak that I literally thought I was dying. How is your thyroid? Are you breastfeeding? Some mothers say that they felt a lot better after stopping breastfeeding, this wasn't a case for me.

3. I don't really know what you mean by adrenaline surges. I used to get some kind of weird stuff going on during night sleep, when I would wake up startled with my heart raising and horrible feeling of anxiety. I don't get them anymore.

4. I'm on 5mg of Lexapro, but will have to increase it in 2 weeks, we are just starting very slow. I've noticed immediate reduction in my hr, it took only a day for me, but I'm still taking beta blokers, very low dose, because I used to get SVT's and had an ablation done for that. Well it's a long story actually

You are welcome to PM me, if you have more questions or just want to chat to someone about being a new mommy or POTS.

cma

[cma]

Thanks everyone for your input.

I'm feeling so confused, I thought I new enough about POTS, but now I don't understand it at all.

Today I did a poor man's TTT, standing for 10mins. The highest my hr got was 80bpm, at the beginning it was 70bpm, and my resting hr was 59bpm, so it didn't reach the 30bpm mark. I wonder what does that mean, if SSRI is making such a dramatic difference in my case. And why for some like Akgirl it doesn't help.

[abbyw]

I think, that like others have said, it may be that you do in fact have POTS, but the SSRI is working to help you. I think that is the case for me as well. I know that many people have found that it helps them. Of course, there are some who it does not help, and they have to look further, but we should be grateful that we found something that works for us.

Are you feeling better overall?

[Altruism]

Oh, I'm so excited for you!!!!!!!!!! How long after starting the SSRIs did you feel the difference?

I'm 4 days on 12.5 (upped to 20mg yesterday) Zoloft and I have increased anxiety, but I also feel less brain fogged and my hr is a little lower. Maybe I'm one of you too? Can't wait!!!!!

[corina]

cma, I don't have the increase in hr anymore. I do have some other symptoms but most are covered by the octreotide. My other symptoms are brainfog, incontinence (I really hate that one), fatigue (but less than I had before), yawning, blood pooling (both legs and stomach) and I think I might forget a few. Octreotide is a big help for me but the LAR has some ups and downs during the 3 weeks it works for me which is why I have "good" days and days where I'm doing worse. It didn't lower hr which is why I needed the ssri. I started the SSRI on 10mg which showed a mild decrease in heartrate so my neuro and I decided to try a higher dose which covers the raise in hr. Soooo I'm not cured but all in all I'm doing better than before!