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Newish POTS "episodes"


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Hi All

I am having symptoms again/visits from my old friend POTS--similar to what I've experienced in the past. As I am sure this is the case for most of us, it is really hard to remember all the different symptoms/sensations I have ever experienced with this--particularly since it has been over 2 years now since I have had anything dramatic or disabling.

Anyway, over the past several days I have had these discrete episodes which feel a bit familiar. They don't seem to be triggered by anything. I suddenly feel very weak, slightly nauseated, feel an adrenaline rush, my skin flushes slightly, I have a bit of a feeling of tunnel vision. I check my pulse and I am not experiencing tachycardia when this happens. It lasts less than a minute and then I am back to normal. I am also having episodes of feeling intensely hungry--even though I am eating as I normally do. I got this all the time while pregnant--not surprisingly (and particularly when significantly POTS-stricken).

I had a different episode on Saturday night. I ran a couple errands at a local mall, and decided to park my car in one place and walk the two different places I needed to go--as I always am looking for exercise opportunities. Halfway through I felt really--well, weird. My heart was racing this time, and I had a lot of ectopic beats. I felt like I couldn't breathe and felt dizzy and was having adrenaline surges. I also had a sudden sharp pain in my groin that felt like a really bad muscle spasm (this was probably the weirdest part of it). I stopped walking and felt better again within minutes.

I also woke up with some very bad leg and foot cramps several times last night.

It is amazing that even after dealing with symptoms for several years, that when symptoms come on, they can still feel so new and unexpected and kind of scary. It is also so amazing how this condition can bring on so many different and different combinations of symptoms, which can evolve over time in individuals (I know my specialist has told me this--that over time different symptoms can begin to take precedence, others disappear, new ones appear).

I have been taking only 20 mg of prozac a week, and am thinking it is probably not enough and at least partly why these symptoms are occuring.

Somehow it is therapeutic and helps me process all of this, to write it down to all of you who take the time to read my post! Thanks for reading!

Katherine

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Wow Katherine, sounds like I could of wrote this post. I am so sorry you are having a bit of a setback but I bet you will bounce right back. I feel the same way that you do, when symptoms come back, I question wether I had them before, if it felt/was the same. I have been getting adrenaline surges also. Feel them in my head, stomach and of course the ole ticker. It worries me the most when it affects my heart. It only lasts a few seconds but it worries me anway. It happens so quick I can't check my pulse, but when I do check it, it is not going fast. I also get them sometimes up to 20-30 times a day! Now that frightens me. This has only recently been happening. I felt something similar years ago, but not to this extent and not this frequently and those did subside but now I am afraid they will not. I am switching to toprol to see how that works and still contemplating the lexapro-ssri. :

I wonder if it is also that the older we get, the less we tolerate these episodes or should I say the bigger toll it takes on us. I am hoping this passes also. I don't know..I just wish I could find a Doc that could help.

Let's hang in there together and get through. :D

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Katherine,

I'm sorry you are having to deal with this. I know how frustrating it can be!!

One thought I had when I read your post---have you had your potassium and/or other electrolytes checked recently?

I get much more symptomatic when my potassium drops (even when it drops to the low end of "normal") and experience the same symptoms you are describing. Nobody has been able to figure out why my potassium drops like it does but I just take a low dose potassium pill for a few days and increase the potassium in my diet and that seems to help.

I hope you don't continue to have episodes like this; maybe you can take it easy for a few days and just let your body rest.

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Katherine, I know these are scary especially after you've been feeling good for so long. (I've been on the road of improvement as well and have had a few episodes of weird arrythmias that come out of no where lately.)

I know it's hard not to think, "oh no, I'm sliding backwards down in the POTs hole," but I would tend to think that after such a long period of time of relatively good health and little symptoms that you will most definitely bounce back from these epsiodes, especially if you're not experiencing any radical changes in lifestyle or undue stress or change in diet, etc. Poohbear's suggestion of checking electrolytes is good and also you may want to consider trying magnesium citrate or oxide for those muscle spasms. It's not always safe to supplement potassium though, unless you're definitely low and your doc has said okay.

The heat of the summer will cause me to experience weird sensations and potsy feelings more than the winter months. Perhaps it was awfully warm outside on the days you had these symtpoms flare up?

Well, be sure and do all of the standard POTS therapies you can to keep you body in balance and just don't over do it.

Sending healing hugs and peace of mind your way.

Gena

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Hi Katherine - I was wondering if you are still on your Lyme treatment?

When killing the Lyme bacteria with Antibiotics most people experience a herxhiemer reaction which is an intensification of many symptoms as well as "old" ones... It can cause anything and everything and make you quite ill.

Although you feel sick it actually is a good signt that you are getting to the disease.

I am not a Dr, but just from experience it sounds very much like an intesitity due to this...I have been there and know what you are saying.

and of course any type of POTS will act up tremendously while this occures...

Hope this helps :D

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Katherine,

I, too, am sorry to hear you're having symptoms lately. I can tell you I will still get some of the same sensations you describe out of the blue. But, happily, they go away almost as quickly as they appear. A few will linger on, particulalry if I think about it too much. I know I'm not concocting these symptoms in my head - nor are you, of course! But if I focus on, say, being dizzy or feeling like I'm not able to breathe, I find the symptom is troublesome and worrisome. If I distract myself, lo and behold, I find the symptoms will diminish. This is especially true for the odd sensation of feeling like I can't get a good, deep breath. This feeling is often accompanied by the sensation of anxiety, even through I'm not consciously anxious about anything. I've chalked it up to ANS issues, since I can jump on the treadmill and crank out a good, hard run in the midst of one of these episodes. Clearly, I am getting a breath, or I wouldn't be able to do this! (Yeah, I know - odd coping strategy, but it convinces me I'm not dying when I do this!)

Anyway, all the other suggestions are good ones. The other thing I would note is that I sometimes had strange hot flushes / adrenaline surges when I was on SSRIs. And I still sometimes have them, even though I'm off. I think sometimes it has to do with my quirky thyroid. If memory serves me, you, too, have hypothyroidism? Are your latest labs in good shape? Even if they are, I'm convinced some of us are simply more sensative to fluctuations in hormone levels. Maybe that is part of what is going on right now.

Either way, I hope you are feeling back to normal soon! Good luck and keep us posted!

RunnerGirl

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katherine,

my two guesses were already brought up...electrolytes and your lyme treatment! or is there a little sibling for guiliana on the way???? :)

our bodies are soooo strange with this illness...i don't have any good answers.

nina uses a good rule with the 'three day' rule...i usually go with the 'several weeks' rule if i can tolerate it b/c i swear everything just turns into something else with time!

i'm sorry i have no words of wisdom, but i wanted to let you know i was thinking about you...

emily

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I like the "several weeks" rule too, Emily!

Katherine, didn't you just get rid of your beta blocker a couple months ago and cut your Prozac back? I would be willing to bet that that's part of the problem. I vaguely remember you had some relapses of POTS symptoms when you tried weaning off these meds a while ago too.

I also get these kinds of episodes, although I have not lately, mainly, I think, because I am taking Effexor and it seems to be calming my autonomic system down a bit. But I used to get the sudden shortness of breath/tachy/dizzy thing all the time.

If you ride it out, I bet you can get by with the dose of Prozac you're on. See how you do over the next two weeks, and if you get more than one more episode, maybe it's worth asking your doc about bumping up your dose. Otherwise I think your body will adjust to the lower dose with time.

Keep us posted.

Amy

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Katherine,

everything has been said before, so I just wanted you to know, I feel sorry for your set back. It might be even harder to fall back after feeling good for some time. I really hope you'll be feeling better soon!

Warm wishes,

Corina

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Thanks you guys--all of you. Your support, thoughts and suggestions were all exactly what I needed. I had another yucky episode last night at a dinner party. I actually had to sit down for awhile.

One thing is that I am really tired right now--I have been trying to do too much on not enough sleep, which is not a good thing for me to try to do anymore.

mom4cem--thanks for your support, and I am glad we are all here for and with each other!

poohbear--good point about electrolytes. I try to address this whenever I start feeling off with extra fruits and juices. It does help.

Gena--yes, I think that is the scariest thing. Everything suddenly feels so uncertain when it feels like one is getting worse again.

Jenn, regarding Lyme treatment, I did two weeks of Doxycycline and finished that up about a week ago. That's an interesting phenomenon you describe. I have a friend with long term Lyme problems and I do remember her talking about that too. I doubt this is what is going on for me, but it's good to know that can happen.

Runnergirl--yes, I do have Hashimotos and those very same thoughts have gone through my head too. I have had problems with variable thyroid levels in the past. I can't help but think that the two conditions interact. Also--YES, I completely understand what you mean regarding emotional response to symtoms. The mind/body is pretty entwined with this condition (as it is with any condition, of course, but especially with POTS since the brain is clearly affected by surges of adrenaline if not in other ways too)--one of several reasons for misdiagnosis. I also find that if I start to think or worry about the bad symptoms, they seem to be worse, more scary, last longer. Like you, I do also feel at times that I must prove to myself that my symptoms are not what they appear. So, I push myself on physically. Sometimes this does help mentally. But, definitely if I feel I am going to faint, or the tachycardia and odd beats are very uncomfortable, I sit down!

emily and calypso--you hit the nail on the head. That is a good rule. And I will see how I am in a couple of weeks.

corina--thanks for your support and good wishes.

Katherine

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Dear Katherine, I, too, have had all of the symptoms you have described, including groin pain. If i miss one dose of my atenolol(beta blocker) or am even a few hours late taking it, the tachycardia is out of control. I have extremely low blood pressure and had constant migraines until I went on atenolol. I often have episodes of lightheadedness and tired and weak. I pulled over last week driving because of this-afraid I may pass out. It passed in a minute and I drove home. I find my symptoms much worse in the hot weather and noticed this as early as my teens. I have never discussed this with a doctor, so don't know why I have these episodes. They do go away. I am hoping your symptoms will disappear as fast as they came on. Thinking of you. Linda

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Hi, Katherine. I haven't been posting lately, but I saw this and wanted to offer another idea: Are you in your 30's? If so, you may be heading into pre-menopause (very common in the 30's.) It can exacerbate POTS symptoms - especially with the thyroid thing - or, you may be experiencing what you would have gone through in menopause regardless of ANS dysfunction. Your symptoms sound very much hormone-related, especially the groin pain (which is what led me to consider pre-menopause.)

Think of you often - hope you're past this quickly...

Jen

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Lindaf--for some reason I didn't realize that you also had POTS--I thought you were on the forum for your niece only. I'm sorry you also deal with this. I have pulled over while driving too. Not for years though. I have rarely actually fainted, but I have gotten close a bit more frequently. Thank you for your good thoughts on my behalf. I do believe this is going to pass, for the time being. I actually made it through today with no actual episodes, but I didn't feel great. I managed to get through two long meetings at work however.

JLB--that didn't occur to me. I am 36, so I guess it is possible. In any case, I do believe it is hormonally related, since all this came on full-force with my pregnancy. My menstrual cycle is very regular and normal--I guess I thought changes there would be an indicator of menopause? Thanks for writing and thinking of me.

Katherine

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Guest tearose

How are you doing Katherine?

Are you still doing a lot? Are you able to catch up on some sleep yet?

I have been thinking about why after two years this crept back up on you...

This is the part of our dysautonomia that is so frustrating! It is hard to know how to manage a process that lays nearly dormant for a long while and then it seems suddenly, boom!...we have to find the nearest chair sit down quickly!

Well, here's my try at helping...Yes, it happens and it does mean you should make some compromises so you avoid feeling worse.

I did start getting pre-menopause symptoms in my mid-30's and most definitely my symptoms were worse!!! Unfortunatelly, I actually welcomed surgical menopause because I was in very bad shape with the hormone swings and subsequent POTS swings I was having!!! Don't underestimate the serious effects these swings have on you! Also, the tests sometimes showed I was pre-menopausal and other times showed I was not! Those hormone levels were all over the place! Don't rely on the tests if you take them...trust your instincts.

Have you been active lately? You may be exerting yourself more than you should.

Maybe you can start taking the elevator instead of the stairs. I have this memory where I picture you climbing several flights of stairs daily at work.

Are you in air conditioning? Sometimes the switch from very cold to the heat and humidity of the outside can make me feel a sudden shortness of breath and the need to sit for a couple of minutes. Do stay hydrated. This heat came on late this year and it too wears on our fragile systems.

I hope that will a few adjustments you will be able to continue to manage your "normal life" and soon will find your way out of this "spell". Don't concern yourself with too much else for now. Try to find your balance again first. Everything else will follow.

Keep your cool, and your footing!

best regards, tearose

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hi katherine -

maybe you're just too excited about the wonderful new picture site you set up?! just kidding:-)

hopefully my delayed response finds you coming out of your "hole" but i too agree that a few days, while annoying as all heck, isn't enough to get to worried about as of yet. i generally do the "few days" mentality and then move on to the "few weeks" mentality for crashes...i haven't had all of the symptoms you described but i've had most at one point or another over the years...fun fun fun...

there are a lot of possible explanations & thoughts that others have already posted, but i just wanted to send some good, hope-you're-starting-to-feel-better thoughts in your direction...

:-)melissa

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