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Now it's time to take my own advice!


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I stopped my SSRI and beta blocker back in January and all has been pretty/very well until this weekend. I don't think the haircut experience can be completely responsible for such severity of symptoms. Sunday was pretty bad, Monday a lot better, now I am feeling pretty ill again. Weak, muscle pains and odd body and skin sensations, feel like I have a ton of bricks on my chest, episodes of anxiety, especially when standing, serious brain fog episodes. I restarted the SSRI on Sunday AM. I realize since it has been out of my system so long that I will probably go through a readjustment period. I guess stopping the SSRI was an interesting experiment, but this IS what my doctor warned me about. AND, this happened once before--last year, I weaned off the SSRI but after about 2 months, symptoms re-surfaced. Hey, perhaps it is good news that I was able to go a whole month+ longer this time. :blink:

I am keeping all of my own advice in mind, as well as the advice and spirit of all of you who have or are going through similar challenges. I am finding that massive amount of fluids help relieve the muscle pains and weird feelings. Also, eating foods high in potassium is helping, as well as extra salt, of course.

Disappointed, but hopeful too.

Katherine

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Hi Katherine,

That's good news that you were able to manage without the SSRI for so many months without symptoms. It means that you have improved during the past year. Now, it's the waiting for the SSRI to get back in your system.

Ernie

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Hey there, my hat's off to you! At least you made it off the SSRI for a month and longer. That must mean you have had some healing in the past year. I tried to go off of the Lexapro last month, and dived after only 4 days :blink:. Hey, at least we keep trying, right? Take care!

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Oh well ... what can you do? If you function better on this medicine, then that's OK. We do what we have to so we can be at our best. Just because you take a medicine doesn't change who you are, and you most certainly should not feel defeated. You are so lucky that the SSRI helps you so much. Imagine if nothing helped?!

I hope your period of readjustment isn't too long. Are you going to go back on the same one?

Amy

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Thanks everyone.

Amy--you are right. I really have no qualms about being on an SSRI--except that in general I would PREFER to live medicine-free, of course. Yes, I am very very fortunate that the low dose prozac has helped so much, and that I experience minimal side-effects from it (I think I have more insomnia on it than off it--that's it.)

I am re-starting on what I've been on -- 20 mg of Prozac. I know I have heard that other ssri's are more frequently prescribed for POTS. But, this one seems to work fine for me.

I am not having the GI symptoms I had with Prozac when I started on it back in 2003, so I am assuming that my body is fairly adjusted to it now, even after being off it for awhile.

Katherine

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Katherine,

Try not to get discouraged. I know what you mean about wanting to stay med-free. I want to also, although I'm not sure how long that will last. But, the bottom line is, you gotta do what's best for your quality of life. I'll keep you in my prayers and hope that the Prozac gets you back on track quickly. :blink:

Gena

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Isn't that always a hard lesson? Sorry to hear you're not doing so well... I hope you're on an upswing soon! Nina

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Katherine, if we listen, our bodies do tell us what they want to function better but I am glad you were able to go off for a longer period of time. I am just wondering, have you tried going off just 1 med at a time to see how you do s. both at the same time? I am sure you had a reason for this but just curious.

Feel better soon!

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Katherine,

That is great that you were able to do reasonably well without the SSRI for a while...but sometimes being on meds is the only way we can function, frustrating as it may seem. The only time I have been med free was from when I delivered Ethan until he was about 6-7 months old. It was great...I think I cried buckets the day I realized I needed to go back on my meds, because I had done so well without them and then the symptoms crept back until I felt I couldn't function as well anymore. When I got pregnant with this baby I tried to go off everything, and ended up in the ER with a tachycardia episode that was super scary...and back on the meds I went. Mainly the beta blocker- when I am pregnant it's the only thing that keeps my heart in normal rhythm, and the benefits definitely outweigh the risks in this case- especially now that I am in the last trimester, we want my heart rate to stay normal. And with these active toddlers it's important that we have the stamina to keep up with them, right?! <_<

I hope you will feel much better with the meds! Take care of yourself!

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Katherine,

It was good to read your post today as I'm on the other side of the pendelum and I'm not sure what to expect.

I am currently trying to go off of my SSRI (Paxil) which has worked well for me for 2 years. I desire to be on the least amount of meds possible so I'm slowly going off of it to see how I feel. (I went on it to help with my anxiety and I had little-to-no anxiety for 2 years)

I am feeling the affects of going off of the med today -- I'm really dizzy. Did you experience this at all?

I am really hoping that I am not as anxious as I was 2 years ago.

Thanks for your post and for letting us know that youre going back on it - please don't be discouraged about this....

Hang in here,

Lisa

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THANKS EVERYONE! :blink:

I have to say what others have also said many times--I know I feel so much more at peace about this condition and my symptoms, knowing all of you and sharing support.

I feel better this morning than I did yesterday, but the tachycardia is full force.

geneva--I did pretty much stop both at the same time. The tachycardia had diminished to the point that the beta blocker was only making me tired, and dropping my bp to a regular 80/50, and didn't seem to be providing any benefits. However, I was using a very tiny dose on occasion if the tachy did flare (which has been rare over the past 3 and a half months).

Lisa--good luck with your experiment. I think it is good to try to see if you can manage without it now--I wouldn't discourage that at all. I had no withdrawal symptoms when I weaned off Prozac, but I know it is common to have them with SSRIs. Hopefully that should settle down for you soon, but it is a reason why patients have to WEAN off and not just stop taking the medication completely and suddenly. Even with that approach, I think withdrawal symptoms are not unusual. Let us know how you do.

Katherine

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Katherine,

I was so sorry to read about your reappearance of symptoms. But it sounds like you have a healthy attitude about it. You know the SSRI does something positive to rewire your body to mitigate most of your symptoms - so when your body decides to 'trip its fuse' again, you just need to go in there to 'reset' it for some time. I am confident you will be able to be med free someday - but, as others have suggested, the important thing is to maximize your functionality and quality of life in the meantime. If that means 20 mg of Prozac right now, so be it.

Glad you are feeling better this morning. The anxiety was always the worst for me, even worse than the tachycardia. I know the Prozac will help with both.

Be good to yourself and get well soon!

RunnerGirl

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Katherine, I just wanted to step in and join your chorus of supporters. I'm a little late but hopefully not off key!

Attitude is everything, and yours is fantastic. It sounds like you're doing the right things and thinking the right things ... and soon, with or without meds, you'll feel like yourself again.

Were you able to go to work Monday and Tuesday? If so, I hope it wasn't too much of a struggle. And I hope today's a good one for you--let us know tomorrow too, OK?

A note to Lalalisa ... I know someone who lowered his paxil dose or maybe went off it, I can't remember ... there are a number of side effects, perhaps associated with going too quickly. Brain zaps were the worst; I can't remember about dizziness. My suggestion is to taper your dose reeeeeaaaalllly slowly... There's no hurry (is there?) so take your time and take your dose down in tiny increments to decrease any side effects. Maybe you won't even notice! Won't that be grand!!!??? Good luck! and let us know how that goes too, OK?

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Katherine,

You give so much to this site. I just wanted to say that I'm sorry you're under the weather and hope you feel better soon. I understand how you want to be med free - I may be doing my own experiment of going off my beta blocker soon. But if you need the Prozac to get by right now, then that's perfectly OK. It's great that you've found a medication that's so effective at controlling your symptoms. Hope it kicks in soon! :blink:

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Katherine,

Thanks for the support! It's such a blessing to have a place to go where others understand what this syndrome feels like.

Have a great day! :blink:

Lisa

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Thanks again, all.

The worst symptom is this weird, weak sensation in my upper abdomen and back. I think I remember this symptom too from two years ago. It pretty much goes away when I drink a lot of fluids and take lots of salt. But, I still have an overall feeling of weakness that isn't completely going away for the time being.

To add to the "funny POTS stories"--yesterday I was sitting at my desk snacking on sea salt, when a staff person I don't know well came by to drop off a document. He definitely had a puzzled expression.

So, yes, Merrill, I have been at work, but I wasn't sure I'd manage yesterday. It hasn't been unmanageable today--just not comfortable and energy is low. I do have a lot of stress at work right now, that I am trying to keep at bay by just accepting that not everything is going to get done.

Take care all.

Katherine

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Katherine, glad you are being realistic about what you can do during this time of readjustment. You strike me as someone who has a good sense of balance between work concerns and health management. Kudos for that! I hope the symptoms go back into remission once you are back on the meds. It is good that there is something out there that works well for controlling many of your symptoms.

Take care.

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Everyone--your support truly helped me over the past few days. I have really been thinking of the DINET group almost all the time since this sudden onset of challenging symptoms. Today, I feel like I am getting stablized again, even though I still have noticeable blood pooling in my limbs again. I have been able to cut down on salt without having difficult symptoms, for example.

I realize how fortunate I am to have a quick and easy solution to keep me functional and comfortable. The past few days reminded me how difficult the POTS hole is, and what strong people all of you are.

Katherine

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Hi Katherine,

I?m very late with this but I wanted to let you know, that, although I wasn?t able to write you I was thinking about you. I?m glad you?re doing better, and I really hope you feel well enough to do your ?usual? things.

Best wishes,

Corina

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Guest Julia59

Katherine,

I wanted to send you some support as well. I'm sorry I haven't been responding to some of the posts lately---i'm kind of still in a haze of sorts, and now battling a nasty cold.

That feeling you described---the weakness weird feeling in you gut. I have noticed that a lot in the beginning of my POTS. Now when I get it I know it's a subtle warning to slow down, as this was one of the first symptoms I would get before a crash. I have gotten just a few latey due to stress---worry about my son ect. It might be your body telling you to slow down a bit. so much of what you describe sounds much like what I went through when my POTS symptoms started.

It almost like there is a pattern to POTS, although the symptoms are the same they seem to be milder the next time around, or maybe it's because we are getting better treatment. After reading a lot of posts It seems as if there are cycles we go through, and i'm wondering if stress is a big factor in it. It just seems like we can not handle stress like a normal healthy person.

At my last appointment I talked with Dr. Grubb briefly about going of my wellbutrin. He quickly chnaged the subject---I'm guessing he doesn't think it's a good idea to go off it.

It sounds like you were doing pretty good though and you felt pretty safe to go of your SSRI. I'm sorry it didn't work out. It is pretty good that you went that long without it though and you remained fairly stable.

I'm glad your feeling more stable once again.

Julie :0)

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