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BeyondtheRainbow
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Default Sep 14, 2020 at 10:30 PM
  #1
Has anyone have this? I'm terrified of anything that can take away my clozapine but I'm worried something is going on. I get lightheaded whenever I exercise or if I need to lean down for things like moving laundry from washer to dryer or sifting my kitty litter. My heart rate is always a bit elevated and I have a tachycardia dx from an EKG that did not show QT issues (but was a few years ago).

I think that this is just tachycardia but it just seems worse lately and I"m not sure what the lightheadness is. Low blood pressure is likely and so is hypoglycemia from being on Metformin when my blood sugar is not elevated.

I "see" (video) my pdoc Monday and will ask her. For now I'm just curious and frustrated because I just read that clozapine can lower the immune system and that means behaving with lockdown (which I have been.)

Anyway, just looking for experiences and how it felt?

Thanks

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Last edited by BeyondtheRainbow; Sep 14, 2020 at 10:58 PM..
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Default Sep 15, 2020 at 12:43 PM
  #2
If Clozaril is known for that issue, you might consider asking for an annual EKG. I know that Geodon is known for it, so I had frequent (though every other year) EKGs, but they never showed that issue. I also have a tachycardia diagnosis, but my betablocker does a great job at keeping my heart rate just right. I don't have a health issue that would require Metformin. Definitely consult with your doctor that could see the big picture on this. Perhaps you need some med adjustment? Or are you anxious lately? Anxiety does all kinds of things to me, physically. I also have Mitral Valve Prolapse. Mine is not a big deal, but I have read it can cause symptoms like you describe.
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Default Sep 15, 2020 at 06:07 PM
  #3
I'm afraid of long QT syndrome and find it strange that no pdoc or GP has suggested an EKG for me. I feel lightheaded to one degree or another all the time, unless I'm lying down. When I exercise, or even just walk, I feel off-balance and just weird all over my body and in my brain, and I hope that feeling is from meds, not from something that's wrong with my body. I know I need to tell my pdoc about it. I haven't because it's always like pulling teeth to get referrals. Or they say something stupid like "Why haven't you mentioned this before!"


I think it would be a very good idea to speak with your pdoc, if for no other reason than to reduce your concerns about long QT.

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Default Sep 15, 2020 at 06:12 PM
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Originally Posted by BethRags View Post
[B I know I need to tell my pdoc about it. I haven't because it's always like pulling teeth to get referrals. Or they say something stupid like "Why haven't you mentioned this before!"


I think it would be a very good idea to speak with your pdoc, if for no other reason than to reduce your concerns about long QT.[/B]
I agree about not wanting to explain why I've been downplaying this for months. My pdoc knows I've had some dizziness and the tachycardia but not the lightheadedness (which has been increasing for a few months). The lightheadedness now needs to be assessed. I can't even walk the dog at a slow rate without gettting lightheaded, much less get the exercise I need. And I've not told anyone because I"m scared I'll have to come off the only med that has been effective. But I also know better than to not tell about something potentially serious. Oh well. My pdoc is very patient thank God.

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Default Sep 15, 2020 at 10:31 PM
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Originally Posted by BeyondtheRainbow View Post
.....

I feel so bad for you. Many times I've denied side effects for fear of having to stop a good med. But yeah...the lightheadedness needs to get checked out. I hope it turns out to be nothing but an annoying side effect

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Default Sep 15, 2020 at 10:39 PM
  #6
I just need to get it out of my head. I just know that if I have to change APs I'll probably wind up IP for the switch and while IP isn't so bad here it's not fun and last time I was in for a big change it was really hard. It's also scary because there are a lot of typical APs I can't have because I have a history of EPS issues plus I'm on an MAOI. And you don't go on clozaril if they think anything else will work so I don't know if trying anything is even realistic.

But I can't go around nearly fainting. All I need is to faint and crack my head open. I'd also really like to be able to exercise.

I just pray it's not the prolonged QT. I put up with a lot of hard side effects on clozapine and I would hate to lose it because of one thing I couldn't control or choose to put up with.

Ugh.

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Default Sep 21, 2020 at 08:17 PM
  #7
I'm going to be having an EKG soon and hopefully will have results consistent with the last several years: sinus tachycardia in the very mild range. It seems something has changed but we'll know more once I get the test done. My pdoc didn't seem too worried at this point.

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Default Sep 22, 2020 at 06:49 PM
  #8
Hugs, guys!!

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Default Sep 22, 2020 at 07:35 PM
  #9
EKG Thursday. So glad to find out if this is ok.

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