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potsiebarbie
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Okay so...

POTS:1

Carissa:0

I'm thinking with the way things are going I could use an antidepressant. Now I've trialed many. Ssris and snris, (all the benzos mankind has to offer) but now that I've been off for a while I'm looking for some ideas on what's working for others. I know everybody is different, but talking it over and hearing others' experiences might help. Basically I'm constantly feeling worse. Not just pots but I'm assuming whatever is causing it too. It's really wreaking havoc on my body and spirit. I'm depressed from my limitations amongst other things, and honestly extremely anxious. I always think worst case scenario. Every ache and pain must be a blood clot or aneurysm. I just can't shut that part of my brain up. And my doctors (or lack thereof) are no help. Any experiences with depression, anxiety, and/or meds for that would be greatly appreciated. 

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Of all the challenges POTS presents, few are greater than continually having to overcome the lack of mental and physical energy (and optimism) our bodies and minds normally hold in reserve for those times when we are sickest or most injured.

Questions: 1. You say you've taken "all the benzos mankind has to offer". Did any of them work for you on any kind of a consistent basis? 2. Are you presently able to take good enough care of yourself with respect to your diet? 3. Are you presently able to exercise (at all)? 4. Do you have a support system (family, friends, helpers) in place that is willing and able to assist and help you? 5. Are you able to work (at all) or go to school? 6. Do you find yourself continually focusing your thoughts on your dysautonomia and the negative ways it affects and impacts you? I realize these are all personal, some very personal, questions so feel free to not answer one or all. 

I also realize this doesn't offer up a solution and, in all fairness, might be no help at all. Even so, just know that you're not alone in experiencing being overwhelmed by your dysautonomia. Fact is, POTS eats sh*t. (Pardon my language, but it really does.)

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I am sorry @potsiebarbie that you feel so unwell. Yes - I know what it is like. When I was at my worst and had to stop working I was overwhelmed with the outlook of having to live with so many limitations yet still be so sick. I became depressed, partially due to the fatigue and exercise intolerance, the fact that I was housebound, the anxiety over taking seizures and syncope that I could not control and partially because - well, because I felt depressed. This was a downward spiral for me and I even became so bad that I considered suicide. This was a bad time and I immediately talked to my doctor and my closest friends about this and was evaluated ( my choice ) by a neuro-psychologist. She di a thorough, many hours long exam and told me that my depression was a result of the symptoms of my illness and gave me ideas as to what to do every day to get better. And my PCP started me on SSRI ( Lexapro ). I have been on that for many years and tolerate it well. … Today I am in much better place, I have accepted my limitations and found relief of many symptoms through medication and lifestyle changes but still am disabled. I guess what I am telling you is - don't be hard on yourself. What you are feeling is common and many of us feel - or have felt - that way. Yes - medication helps many but in my case it was talking about what was going on and allowing myself to be helpless and human and letting other people in on my misery. It is VERY important to have someone to talk - whether this is a doctor or friend or family or counselor. Sometimes when we get too wrapped up in our feelings we loose the ability to think straight and talking with others puts things into perspective. And it lets us see that we are not " crazy " or "unreasonable" - we are just human and there is only so much we can tolerate. But others can help us carry our loads. Be well!!!!!

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My story is similar to Pistol's.  I started Zoloft one year ago and it has changed my life.  I had to stop working because of increasing panic attacks and I really felt hopeless and helpless.  I am on a very small dose - 25 mg - but what a difference.  I have held a part time job since November with no panic attacks at all.  It has been such a relief.  Hang in there, it can get better.

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20 hours ago, ScottS said:

Of all the challenges POTS presents, few are greater than continually having to overcome the lack of mental and physical energy (and optimism) our bodies and minds normally hold in reserve for those times when we are sickest or most injured.

Questions: 1. You say you've taken "all the benzos mankind has to offer". Did any of them work for you on any kind of a consistent basis? 2. Are you presently able to take good enough care of yourself with respect to your diet? 3. Are you presently able to exercise (at all)? 4. Do you have a support system (family, friends, helpers) in place that is willing and able to assist and help you? 5. Are you able to work (at all) or go to school? 6. Do you find yourself continually focusing your thoughts on your dysautonomia and the negative ways it affects and impacts you? I realize these are all personal, some very personal, questions so feel free to not answer one or all. 

I also realize this doesn't offer up a solution and, in all fairness, might be no help at all. Even so, just know that you're not alone in experiencing being overwhelmed by your dysautonomia. Fact is, POTS eats sh*t. (Pardon my language, but it really does.)

Hi. Thanks for responding! To answer your questions....

1. Yes. Benzos seem to be relatively helpful. However, I would need them multiple times a day and I build tolerance rather quickly. So it's hard to rely on it all the time. I usually try to save it for when I really really really need it. I guess. IDK. Lol 

2. I'm still working on finding a diet and exercise regimen that suits me. I'm one of those people who needs it all on paper laid out in front of me so I could follow it. So if someone was like do this exercise everyday, and here, follow this meal plan- I'd be golden. 

3. Usually, yes. I don't seem to have that exercise intolerance (knock on wood) that others have. However, I've been having issues with my leg going numb (from foot up to low back/abdomen) when walking for a bit. That has kind of put a damper on things. I've also got some nerve and muscle (I think) pain going on that's pretty debilitating. On the bright side I start physical therapy tomorrow so this is basically my last hope since my doc doesn't want to do any further testing.

4. My support system is nil. Nobody in my family takes the whole pots thing seriously. I'm just a lazy hypochondriac. 

5. I don't work. I take care of three tiny humans full time (two of which have special needs). I am thinking of going back to college (taking a few classes at the local community college). 

6. Yes! I'm consumed with them! I also feel like I'm just gonna drop dead and my kids will be the only ones home. I have awful thoughts like that. Not wanting to plan much into the future cuz I feel like whatever is wrong with me is gonna take me sooner rather than later. Horrible, I know. I just wish I had a kick-*** team of docs who actually give a d***. 

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2 hours ago, potsiebarbie said:

1. Yes. Benzos seem to be relatively helpful. However, I would need them multiple times a day and I build tolerance rather quickly. So it's hard to rely on it all the time. I usually try to save it for when I really really really need it. I guess. IDK. Lol

Given concerns over both tolerance and the potential for addiction, I think that's a smart approach. There are other, non pharmaceutical approaches that have been proven to work well including yoga, meditation and EFT tapping.

For me, both exercise and my following a rather strict diet makes all the difference. With respect to exercise, I'm fortunate in that I enjoy what I do. (And yes, after a lifetime spent doing what I do, I'm good at it.) When it comes to my diet, both of my last two ER visits were a result of me NOT following that rather strict diet. A mistake (twice made) that I've promised myself I won't make again.

One of the buggers with POTS is it's not at all unusual for a person with it to not look sick at all. I guess it's easy for those on the outside to pass things off as simple character flaws or due to a person's inherent laziness or weak will. 

Hang in there. Stay strong. Fight for yourself. You're worth it.

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14 hours ago, Pistol said:

I am sorry @potsiebarbie that you feel so unwell. Yes - I know what it is like. When I was at my worst and had to stop working I was overwhelmed with the outlook of having to live with so many limitations yet still be so sick. I became depressed, partially due to the fatigue and exercise intolerance, the fact that I was housebound, the anxiety over taking seizures and syncope that I could not control and partially because - well, because I felt depressed. This was a downward spiral for me and I even became so bad that I considered suicide. This was a bad time and I immediately talked to my doctor and my closest friends about this and was evaluated ( my choice ) by a neuro-psychologist. She di a thorough, many hours long exam and told me that my depression was a result of the symptoms of my illness and gave me ideas as to what to do every day to get better. And my PCP started me on SSRI ( Lexapro ). I have been on that for many years and tolerate it well. … Today I am in much better place, I have accepted my limitations and found relief of many symptoms through medication and lifestyle changes but still am disabled. I guess what I am telling you is - don't be hard on yourself. What you are feeling is common and many of us feel - or have felt - that way. Yes - medication helps many but in my case it was talking about what was going on and allowing myself to be helpless and human and letting other people in on my misery. It is VERY important to have someone to talk - whether this is a doctor or friend or family or counselor. Sometimes when we get too wrapped up in our feelings we loose the ability to think straight and talking with others puts things into perspective. And it lets us see that we are not " crazy " or "unreasonable" - we are just human and there is only so much we can tolerate. But others can help us carry our loads. Be well!!!!!

Lexapro is the one I was on last. If you don't mind me asking, did you have to up the starting does?

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10 hours ago, songcanary said:

My story is similar to Pistol's.  I started Zoloft one year ago and it has changed my life.  I had to stop working because of increasing panic attacks and I really felt hopeless and helpless.  I am on a very small dose - 25 mg - but what a difference.  I have held a part time job since November with no panic attacks at all.  It has been such a relief.  Hang in there, it can get better.

If you don't mind me asking, was that your starting dose?

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16 minutes ago, ScottS said:

Given concerns over both tolerance and the potential for addiction, I think that's a smart approach. There are other, non pharmaceutical approaches that have been proven to work well including yoga, meditation and EFT tapping.

For me, both exercise and my following a rather strict diet makes all the difference. With respect to exercise, I'm fortunate in that I enjoy what I do. (And yes, after a lifetime spent doing what I do, I'm good at it.) When it comes to my diet, both of my last two ER visits were a result of me NOT following that rather strict diet. A mistake (twice made) that I've promised myself I won't make again.

One of the buggers with POTS is it's not at all unusual for a person with it might not look sick at all. I guess it's easy for those on the outside to pass things off as simple character flaws or due to a person's inherent laziness or weak will. 

Hang in there. Stay strong. Fight for yourself. You're worth it.

Thank you! What kind of diet do you follow? And what exercise? I'm nosey. Lol

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1 hour ago, potsiebarbie said:

Lexapro is the one I was on last. If you don't mind me asking, did you have to up the starting does?

I started on the lower dose - 10 mg, and I am still on that dose. But it is very individually what SSRI/ SNRI or what dose of which agrees with you personally. 

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13 hours ago, potsiebarbie said:

Thank you! What kind of diet do you follow? And what exercise? I'm nosey. Lol

I have slow gut motility (no doubt courtesy of dysautonomia/POTS) so I eat small meals. I have to be very careful eating anything that is high carb or with an abundance of refined sugars. I rarely eat any sort of animal protein. I have to wait out my gut (not eat anything) most mornings by drinking plenty of water and herbal tea first thing. I also try to exercise if not first thing in the morning not long thereafter. For exercise I do both yoga and YQi and I also ride an indoor exercise bike. (I also teach both yoga and YQi at a nearby studio.) A fancy meal consists of cooked veggies followed by a cup of half decaf coffee. (Good thing I enjoy both.) Yes, there are times when I wish I could blitz out on a plate full of barbecued pork ribs with a steaming hot baked potato slathered in sour creme and butter on the side, but I can't. At least not without paying a big price after in the form of a major POTS attack likely followed by a trip to the ER. My last trip to the ER came after a meal of pan seared salmon with rice and fresh baked bread, all topped off by a big salad. Hardly a gluttons paradise. Still, not long after I'd eaten, my gut went into full-on rebellion, my heart rate spiked, peaking at north of 150 bpm. My diaphragm then went into "squeeze the life out of him mode" which sent me into a spiraling, wrenching panic. It was h***.  And lesson learned.

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