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Hello,

It has been a while and I am back.  A few weeks back I was at work and got severe lightheadedness, stomachs pains, sweats, and heart palpitations.  I ended up leaving work in an ambulance.  I was in a sinus tachycardia and my blood pressure was high (169/110).  Once at the hospital I was told I most likely had a panic attack.  Ever since that episode I have been having an increase in anxiety (no surprise there).  

Here’s the confusing part for me:

I have been on 200 mg Zoloft for years (for anxiety);

When I take .50 mg of Ativan it sometimes (not always but 80%) works to help;

I tend to feel really lightheaded for a minute or 2 before heart rate goes up;

I usually run low blood pressure wise (90s/60s)-lately I have high high blood pressure readings after these attacks (My dr is aware of this new bp issue and has ordered blood tests and 24 hr urine tests);

I don’t know what to do.  My prescriber for anxiety meds wants to add Buspar.  I’m nervous since I’m on max dose of Zoloft bc combining the 2 Meds can contribute to serotonin syndrome. My prescriber does not like to prescribe Ativan (understandably).  However, I don’t know how I’m going to be able to continue to work part-time with whatever is going on.  
 

Does this sound like more of a panic problem?  POTS? Both??  
 

Thank you for reading thus far.  Any helpful ideas are appreciated.

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It could be a little of both. These symptoms can certainly cause some anxiety, which makes the symptoms worse. I've actually been dealing with nervous system "crashing" as I write this. The same symptoms you describe have been going on all night...body heating up, nausea, heart racing, digestive issues. It's all quite scary even when you've been through it time and time again. 

Some believe anxiety medications help. I've been on 5 and then 10 mg Lexapro for a few months now and it's still happening. Like I say, I'm not sure more anti-anxiety medication is the best long term answer, but I could certainly be wrong. I'm not familiar with your history. Have your doctors accepted a dysautonomia diagnosis along with the anxiety or are you being treated as it's only anxiety? 

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My problems go between high and low. They have decided I have an overreactive sympathetic nervous symptom. For me it isn't panic or anxiety related, but those types of drugs can calm the sympathetic nervous system in some. We tried one that was a Mu Inhibitor and it was very bad for me (my bp dropped too low to walk). We are trying a drug called Elavil now. It helps, but hasn't solved it yet, but we are starting with a low dose. I'm going to go up on it soon.

Maybe your issue isn't anxiety as much as it is your body's response to stimuli. Sometimes it can be hard to discern between the two. I don't feel anxiety, but my body starts doing stuff that stresses me or concerns me. I don't really have anxiety about it, but it can put me in a distressing situation. This is why my doctors decided to try to alter my sympathic nervous system response. 

I don't know if this sounds like what is happening to you, but I think some of these meds can be fairly easy to try. You may want to ask your doctor if you think this sounds familiar. I hope you figure it out.

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I've had episodes like this and I was told anxiety or panic attacks but I think for us w POTS it may be more complicated than that.  However, I am over 50 and been having these symptoms usually in pattern of flare ups since my late 20s and it has only gotten better and less frequent over time, so I can only assume it is POTS and is essentially benign.  Increasing fluids and salt always helps me when I get into a flare, and can help reduce these symptoms.  Also IV fluids.  Sometimes it is triggered by an infection--eg UTI.  Often worse before my period starts.

I hope bc of these symptoms they did an EKG and are ruling out any cardiac problems.  Good you are getting blood and urine tests too.

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17 hours ago, MomtoGiuliana said:

I've had episodes like this and I was told anxiety or panic attacks but I think for us w POTS it may be more complicated than that.  However, I am over 50 and been having these symptoms usually in pattern of flare ups since my late 20s and it has only gotten better and less frequent over time, so I can only assume it is POTS and is essentially benign.  Increasing fluids and salt always helps me when I get into a flare, and can help reduce these symptoms.  Also IV fluids.  Sometimes it is triggered by an infection--eg UTI.  Often worse before my period starts.

I hope bc of these symptoms they did an EKG and are ruling out any cardiac problems.  Good you are getting blood and urine tests too.

On the one hand, I'm sorry you've been dealing with this for so long, but on the other, I'm so happy it's improved over tiime. I love reading encouraging posts like this. I'm only a couple of years (two or three) into my own dysautonomia journey, so do you mind if I ask how long it was before these "attacks" became less severe and perhaps you started to become more functional again? 

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Thank you everyone for your replies.  I have had 3 ablations (SVT) and many tilt table tests.  I am currently 36 and was diagnosed at 19 years old.  Beta blockers drop my bp too low; florinef and midodrine gave me severe headaches.  I have had a few ekgs lately which came back normal.  I just don’t know where to go from here.  I think I def need something that calms my nervous system down but I’m not sure what I can take long term.  Momtoguiliana-I remember you from years ago when I first came on this site!!

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On 9/4/2020 at 3:28 PM, MTRJ75 said:

On the one hand, I'm sorry you've been dealing with this for so long, but on the other, I'm so happy it's improved over tiime. I love reading encouraging posts like this. I'm only a couple of years (two or three) into my own dysautonomia journey, so do you mind if I ask how long it was before these "attacks" became less severe and perhaps you started to become more functional again? 

Yes, after a very bad year long bout of severe and disabling POTS, I improved.  It was about 4 years until I became essentially symptom-free (by that I mean very minor symptoms, I was able to generally lead a normal life).  I very occasionally had small flare ups over a 15 yr period after that.  Then I had a very severe flare up 2 years ago and was sick for 2 months (unable to work).  Dr found my B12 was low.  I guessed that was the trigger but my specialist didn't think it was related.  Then 2 yrs later I had another bad flare up.  I just recently recovered from this.   It was about 6 weeks of severe symptoms.  No idea what triggered it.  I am in perimenopause however so that may also explain both of these more recent flare ups.

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Hello, there,

I've been going through something very similar.  I hope that you don't mind that I share.  

At any rate, I also went to the hospital recently because I couldn't get my heart rate under control.  I take propranolol 10mg TID to help with the tachycardia, tremors, etc.  Lately, though, I've noticed that I've had a lot of break through symptoms with (of course) accelerated heart rate with standing within seconds and then my BP will shoot up.  I know I have had anxiety in anticipation of the symptoms because inevitably when it happens, I get this serious sense of impending doom and I become very irrational.  It's embarrassing.  Yes, I've been through it several times but I'm not always sure when I should ignore what's happening.  I'm not that young anymore so I cannot scoff at a squeezing sensation in my chest with a pounding heart rate.. or at least I didn't this time.  Everything came back normal along with labs, ECG, CT scan, etc.  Perfect, even.  But the symptoms have still persisted. 

The practitioner suggested that it was a combination of an organic event that is competing with the anxiety of anticipation.  I agree to a point.  I don't know of many people in this climate that aren't experiencing anxiety to some degree or another.  Whatever the case may be, it doesn't make it any less frustrating to deal with this when I've made so many boring but positive changes:  exercise everyday for 30 minutes, drink only water (3 Liters) a day, mostly healthy diet, maintaining medicine on a regular schedule, etc.  I just don't understand it.  I also spent a good five months bed bound in 2018 and I swore to myself that I would do everything possible to get past this, somehow.  I expect flares but holy moly, folks.  

So my question to you all is.. do you think that maybe the therapeutic window is closing as far as the beta blocker is concerned?  Is that possible?  It is the only real medication I take for my dysautonomia symptoms besides Meclizine for vertigo and nausea.  I've noticed it hasn't been very effective either.  I just don't know any more.

I'm going to see a new cardiologist next week to find out what can be done.  The practitioner also suggested that maybe it is time for a medication adjustment (been the same for four years) and she suggested an antianxiety drug.  I haven't taken it yet.  I'm still a tad skeptical but then, that may be the anxiety talking.  I just worry that a new beta blocker may drop my already low resting heart rate and BP.  I'm at a loss.  What do you think?  

I wish I had more answers than questions.  I can always come back and let you all know what the cardiologist suggests.  He may have some insight, but I'm not so sure.  

Take care of yourselves in the mean time.  What I can say with certainty is that you are not alone.  Talk soon!

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@UnaOwenAn antianxiety med might not be bad if you can tolerate it... not because it is necessarily anxiety, but because it can smooth out your sympathetic nervous system's response to things. I'm starting to think we are frequently diagnosed with anxiety because these meds accidentally often work, not because it is actually anxiety. Frustrating coincidence...

Your situation may be like mine. My disease progressed so more medication was needed. Stopping my beta blocker was a disaster. It hadn't stopped working. 

Hope you find the right answer for you.

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@UnaOwen - I second what @KiminOrlandosaid: Antianxiety drugs, especially SSRI's and SNRI's are a common medication used for symptomsrelief in POTS, it regulates the neurotransmitter serotonin in the brain, SNRI's also regulate norepinephrine. I have been on SSRI Lexapro for many years with good effects. I also took Wellbutrin in addition for a while and did well on it but developed a skin reaction to it and had to stop. It does help also for some of the internal restlessness I feel when in al flare. 

I was evaluated by a neuropsychologist twice and each time she mentioned that the anxiety I feel is related to the POTS symptoms, Our symptoms are scary so naturally we get afraid when they set in and this dumps more adrenaline which makes the symptoms and the anxiety worse .... SSRI has helped me to somewhat remain in control and stay calm when the symptoms start. 

I also agree that you might experience a change in your symptoms, POTS will change with your natural body changes. In my case it often occured that I either needed to change the dosage of a med that I had taken for many years or add another med. If you tolerate Propanolol it may simply be an increase of the dosage, 10 mg is a quite low dosage. But adding a SSRI or SSNRI may be enough, it all depends on your body. I would trust your doctors suggestions and try. Let us know what happens!!!

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On 9/8/2020 at 9:37 AM, MomtoGiuliana said:

Yes, after a very bad year long bout of severe and disabling POTS, I improved.  It was about 4 years until I became essentially symptom-free (by that I mean very minor symptoms, I was able to generally lead a normal life).  I very occasionally had small flare ups over a 15 yr period after that.  Then I had a very severe flare up 2 years ago and was sick for 2 months (unable to work).  Dr found my B12 was low.  I guessed that was the trigger but my specialist didn't think it was related.  Then 2 yrs later I had another bad flare up.  I just recently recovered from this.   It was about 6 weeks of severe symptoms.  No idea what triggered it.  I am in perimenopause however so that may also explain both of these more recent flare ups.

Thank you. Posts like this are very important to read when things are going badly. It's easier to persevere if we believe better days may lie ahead. 

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On 9/9/2020 at 5:07 AM, Pistol said:

@UnaOwen - I second what @KiminOrlandosaid: Antianxiety drugs, especially SSRI's and SNRI's are a common medication used for symptomsrelief in POTS, it regulates the neurotransmitter serotonin in the brain, SNRI's also regulate norepinephrine. I have been on SSRI Lexapro for many years with good effects. I also took Wellbutrin in addition for a while and did well on it but developed a skin reaction to it and had to stop. It does help also for some of the internal restlessness I feel when in al flare. 

I was evaluated by a neuropsychologist twice and each time she mentioned that the anxiety I feel is related to the POTS symptoms, Our symptoms are scary so naturally we get afraid when they set in and this dumps more adrenaline which makes the symptoms and the anxiety worse .... SSRI has helped me to somewhat remain in control and stay calm when the symptoms start. 

I also agree that you might experience a change in your symptoms, POTS will change with your natural body changes. In my case it often occured that I either needed to change the dosage of a med that I had taken for many years or add another med. If you tolerate Propanolol it may simply be an increase of the dosage, 10 mg is a quite low dosage. But adding a SSRI or SSNRI may be enough, it all depends on your body. I would trust your doctors suggestions and try. Let us know what happens!!!

Hello, all!  Thank you for the replies and the feedback and thanks to the OP for posting this topic.  Here's a quick update.

The cardiology appointment went much better than I expected and it even offered a little hope.  The cardiologist was attentive and concerned... better yet, he wasn't interested in being over zealous in changing things up just yet.  He's scheduled an ECHO and I will be placed on a Holter monitor for two weeks for observation.  He hasn't offered an empty promises but he did say, "We have better beta blockers available than what you are currently taking and I really want to make sure that when these episodes are happening that it isn't SVT."  

I had a previous cardiologist that was very dismissive because my heart is actually really healthy.  That doesn't change the fact that it makes everyday activity absolutely miserable.  The not super cardiologist told me bluntly to "manage your expectations."  I'd rather manage my condition.  That's just me.  Believe it or not, the visit has definitely changed my outlook on this situation more so than it has in the years since my diagnosis.  Maybe I will find some answers for us all.  Who knows?  

Again, thanks for reading and responding.  I'll keep you updated and i hope you do the same for me!  Take care of you!

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MomtoGiuliana, I also have had a relapse after many years and my B12 and D was discovered to be low? Strange?  Also, I used to have autonomic storms and a doctor told me low blood volume can actually cause panic attacks. They have a physical cause.

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17 hours ago, angelloz said:

MomtoGiuliana, I also have had a relapse after many years and my B12 and D was discovered to be low? Strange?  Also, I used to have autonomic storms and a doctor told me low blood volume can actually cause panic attacks. They have a physical cause.

Hmm that is interesting.  I do think a lot of people are borderline low with D and B12 in the general population.  But who knows.  For us being low on these vitamins might be more of a problem.?

And that totally makes sense to me that low blood volume can cause a feeling of anxiety or panic attacks.

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On 9/20/2020 at 3:14 PM, angelloz said:

doctor told me low blood volume can actually cause panic attacks

I wonder if I could have gotten low blood volume after my emergency hysterectomy . I had to have a transfusion with 2 liters of blood. My POTS systems started shortly after, then returned 5-10 years later as of now. I had 5-7 years of pretty good health. I had no idea it was autonomic dysfunction. I was 50, but started having weird symptoms after I had my son at 40. 

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It was difficult at first to describe this feeling to my doctor. I called it my non-anxiety anxiety. I wasn’t anxious about anything. I had a full blown episode in front of him during an appointment. When he saw what was happening, he linked it to my cortisol cycle. We have been using hydro cortisone 3 times a day - one at 3am because that’s when lots of things happen (the “hour of the wolf” the time of night most people pass). Despite the inconvenience, it’s worth the 3am medication to avoid that horrific feeling. These attacks, with me, can go on for hours often with me sitting rigid in a chair, uncontrolled trembling, sweating, feeling “frozen,” etc. The hydrocortisone seems to have mostly eliminated those episodes.

Prior to seeing the episode, the doctor put me on a high dose of Xanax- but it nothing to relieve the feelings I was experiencing.

Just something to consider should anti anxiety meds not work.

Robert

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I have and continue to have ongoing everyday lightheadedness. My only relief is to lay down. Sitting is usually ok. The tilt table test results  seems to point to pots. I’ve read a lot on the subject but wondering if anyone has the lightheadedness everyday and at all times while standing. This has been going on since May of 2018. I literally woke up one morning and bam there it was. The lightheadedness. I thought maybe I hadn’t drank enough water or something I ate. It was crazy. It has never gone away. So my ? Is anyone experiencing this every single day while they are standing. Will be seeing my third cardiologist soon. Thank you for any feedback you may have. Ursula 

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On 9/3/2020 at 3:16 AM, KiminOrlando said:

We are trying a drug called Elavil now. It helps, but hasn't solved it yet, but we are starting with a low dose. I'm going to go up on it soon.

Update... Elavil failed due to bad side effects. Back to the drawing board.

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