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interesting diagnosis
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interesting diagnosis

Well, I went to a specialist last Friday.  The doctor was a cardiologist specializing in the dysautonomia associated with Mitral Valve Prolapse.  While he said that I do not have MVP, he said that I do suffer from dysautonomia.  He said that the symptoms are very much like anxiety symptoms, but that with some medication, I should be ok.  So he gave me some Corgard and Klonopin.  I started taking last Friday night and I feel better today than I have in 4 months.  I find this amazing, and I thought I would share it.  Has anyone heard of dysautonomia?  He mentioned something about hypercatechlominia being my problem. I am very interested in knowing if anyone has experience with this, but I am so excited that I feel better.  Maybe this is what some others are suffering from.  
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Avatar_m_tn
Thanks for your encouraging response.  You mentioned pheochromocytoma.  I had a urine test done for this which came back negative.  Would I need to have the blood test and the CT scan as well if the urine test came back negative?  

Also, how much of the Klonopin do you take and how do you take it?  My DR has me on a .5 mg tablet before bedtime.  I take 5 mg of the Corgard in the morning and then again at night.  It's working so I am good with it, but I wonder if the dosage will have to be increased as my body gets use to it.  

Again, thanks for your insight.  I have enjoyed reading your responses to other on here as well, as you seem very knowledgeable.  I think it helps that my cardiologist has a specialty in dysautonomia and also has a Phd in clinical pharmacology!

cal7902
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200828_tn?1209921575
When I read your post, I was like WOW.  Good for you.  You are lucky to have such a good doctor and you must be so relieved to know exactly what is wrong with you and that it is easily treatable.  However, your situation is not good for hypochondriacs such as myself.  I started thinking "oh no, what if all these symptoms I've been experiencing is not anxiety and I have an underlying medical condition?!"


gee thanks... :o(

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193245_tn?1189993322
Hey.

Yep, that's why I'm going to the doctor this week instead of next week.  I'd already asked the pharmacy if they could get the TEVA and they said it would take a few extra days. They want the prescription first. I'm going to tell the doctor that's why I'm going early, too, so he knows I'm not trying to horde up the K or something, haha.

Not knowing about these things, I have to ask you a dumb question.  My metabolism is slow.  I'm a low energy, laid back sorta guy.  If I eat too much I get fat, etc.  Wouldn't this make the drug take effect a little more slowly but maybe make it last longer?

I really don't know what I'm talking about when I say things like "interdose anxiety".  It just makes me sound smart.  I do know that I sometimes have anxiety around the time I take the second dose of the day, and I also know that Clonazepam doesn't absorb immediately.  So it sorta made sense to me.  I experience the same kinds of things in the mornings, too, but there's more going on so the character of the feeling's a little different: either I'm more annoyed and anxious with sort of a sickish stomach, or I have just enough going on to distract me from it.

But, yeah, I really, really don't want to increase this dose unless I have to.  I'd like to stay .5 bid forever, if possible, or eventually quit the drug for good.

Is your tapering still going well?



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193245_tn?1189993322
Hey Ryan,

Good to see you around here...you've been absent a lot lately!  I figured that post would turn you up sooner or later though.

It's interesting what you say about the .5 mg Klonopin not being enough to cover a whole day.  I'm still convinced I'm having a little interdose anxiety that tends to occur about an hour before my scheduled doses, and then it takes another hour or so for it to kick back in.  So there's about a three-hour window there that I can get anxiety-ish for a little while.  I have an appointment for my next refill tomorrow which is about a week earlier than normal, and I'm going to take your advice and try to get that TEVA generic to see if it's a little better.

The heart thing, though...that's pretty rare, right?  I mean people who suffer from anxiety and read that shouldn't let that get into their head.
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193245_tn?1189993322
Forgot to say...

please don't use my real name in this forum, haha.  I'm one of these obsessively, intensely private people.
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Avatar_n_tn
Just a quick question, would the Caraco brand potency vary from batch to batch?  Or would this just be a decrease in potency from the brand?

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Avatar_m_tn
I am sorry if my post has made any of you worried as that was not my intention.  It is however, something that a few on here might want to consider. By that I mean finding a doctor who has worked with dysautonomia.  My doctor said that this may be what is wrong with people who have anxious thoughts and feelings.  Also, the doctor said that it is not something to be scared of and that while my nervous system is "out of whack", the meds can help to get me back in balance and he said that I should not be on medication permanently.  

Another  interesting thing that the doctor said is that the dysautonomia is found to be more prevalent in the spring and in the fall and not in summer and winter.

Just trying to provide some information on what I thought was an interesting diagnosis.  I hope it may be helpful to someone, but I certainly understand how difficult it is to have all these symptoms and not know what it is.  Anxiety and panic attacks are really tough to deal with, and I wish everyone the best.  God bless!
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193245_tn?1189993322
Don't worry about it at all.  It's a perfectly acceptable topic here.  I just know what it's like to have health anxiety and so that's why I prodded RCA to say it was rare.
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Avatar_m_tn
To answer your questions:

1.  He did not give any particular reason why it seems to flair up in the spring and fall.  He mentioned that he use to do research with the Vanderbilt Autonomic Dysfunction Center and that some research is being done to determine if allergies could be a factor in the spring and fall prevalence.

2.  Yes. I did have strep throat twice before, but when I was much younger.


Do you think I should have a complete blood count done?  Is this something that I could go get or would a doctor have to have a reason to order it?

3. My "episodes" as I call them, usually go like this.  I will have a strange or weird feeling come over me.  It may be something like my legs feel a little weak or even a feeling like deja vu.  This will trigger the tachycardia, sweaty palms, dizziness, IBS, fear of dying, and other panic symptoms.  I have had these many times, but they were happening about every 2-3 days last month.  Most of my episodes have happened in late February and late August/early September, thus my shock when he said the thing about spring and fall being bad times for this.

The doctor I saw also told me to keep my fluids up, drink lots of gatorade.  The funny thing was he told me that water and diet soda (the kind of soda I drink) were practically useless in helping me and that diet soda, even caffeine free, could possibly make me feel worse because of the carbonation.

I am telling you, this doctor blew me away with his ability to basically describe exactly how I have felt for the past few years when he was talking about how dysautonomia makes a person feel.  He did say that there are many variations and that I do not have anything really bad like several syndromes that he mentioned, but that mine was a very mild case.  Crazy stuff.

Regards,
cal7902
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200828_tn?1209921575
I know you meant no harm...  :o)
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Avatar_n_tn
Hey guys, I was just prescribed Klonopin and like both of you, I am a pretty reluctant (Okay, it takes a train running into my head to take an advil) pill taker.  At this point, though, I have no choice but to explore that this is something I cannot control.  I remembered this post and I had two questions regarding it.

1)  First of all, before I do even MORE damage by googling today, what did you mean by the "heart thing" debaser?  Because I already think I have a "heart thing" and that sends off red flags in my head.  I wanted to ask you so I didn't go searching for something and find things in addition that I didn't need to read.

2)  Is there anything I should expect the first time taking this?  Anything at all?

Debaser, can you explain the atypical panic attacks you used to have?  I would have asked on the blog but it was in reference to a post so long ago I didn't know if it would make sense.

Ryan, I hope you are doing well.

Thanks.
t.

Oh yeah, one more thing, I remember a post about the cost of generic and brand Klonopin.  I only called for generic prices and the cheapest I found was Walmart at 21.79 UNTIL I called Costco:  I couldn't believe $8.54 for TEVA.  Just thought I'd pass that along.
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Avatar_n_tn
Thanks for your response.  The sedation I might feel, is this a "can't function and take care of the kids" sedation?  When I started Lexapro (last year) the beginning was horrible.  (I'm no longer on that).  If I try this and after two weeks see no significant improvement, how long should I continue?  Would the withdrawal process be a hard one at that point?  The psychiatrist told me to call him at the end of next week to see how the first 1.5 weeks were going.  Then he said, we could discuss options.   So, he is pretty hands on.  He actually called today to see how the first dose went but I didn't take it last night.  I haven't actually even filled it.

The pharmacies around here seem to carry either Activas, TEVA or Caraco, with TEVA being in the majority.  I assumed from this post that of the generics, TEVA would be best.  Brand really isn't an option, it is 87.49 and I can't do that monthly so I don't want to start with brand.

Also, thanks again for your response on the other forum to my platelet volume question.  I haven't had anyone mention that the low number is a problem.  I see my internal med doc tomorrow and will mention it to her, she did a whole new round of tests so I'm curious to see if the CRP, WBC and platelet volumes have changed.  I am also seeing a Rheumatologist  next month.  Anyway, that all to say thanks for your time.  Your posts are greatly appreciated.

Take Care, t.
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Avatar_n_tn
Thank you again for your response.  Did you come here to Florida or Minnesota for Mayo?  I had a really good experience at the Mayo Clinic and would make the internal med doctor there my "every day" doctor if I could.  

Again, thanks for your help, I'll be starting the Klonopin tomorrow evening, I hope that's the end of it.

Best wishes to you and take care,
t.
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193245_tn?1189993322
What I meant when I said "the heart thing is pretty rare" is because this is an anxiety forum, and many times panic attacks manifest as cardiac-like symptoms.  Of course there will be some cases when someone has both A/P and some kind of cardiac problem, but it's USUALLY A/P that causes these symptoms.  So back then I was just trying to make sure we didn't suddenly have an epidemic of heart problems on the message board.

If you're referring to my blog, you can always ask a question under an old entry.  Unless it's been an especially busy day I'll see that you made a comment and will usually address it within a day or so.  But I'll give you a brief description of most of my "atypical" or "modified" panic attacks:

Most often I'd be sitting around doing something with the computer or watching TV or sitting at my desk at work, and suddenly my abdomen would get distended.  If it were a real panic attack nausea would follow, and then after that an extreme sense of nervousness and hypersensitivity to stimuli such as sound and temperature.  They could be really miserable, and the "peak" would usually last 15 to 30 minutes.  It seemed like if I had a bad one, though, my stomach would never quite get comfortable again and I'd be more likely to go through the same thing again.  It could go on for hours and even days at its worst.  That's the short version.

Additionally, I started on the Caraco generic and at one point went to Teva.  I didn't have very good luck with the latter, it seemed, but then again it's hard to objectively study yourself.  I was also in the midst of a big life change that month.  I wouldn't hesitate to start on Teva, even though I do suspect it may be a little less potent than Caraco.  If you find you need a little more, you can then switch to Caraco and see if that's better.

I don't like to disagree with Ryan because he knows a hell of a lot more than I do, but I know someone who's starting Clonazepam right now.  She's on .5 mg bid.  The first night was last night, and she split the pill in half.  Finding out that it didn't make her sick, she then took the other half about 1.5 hours later.  This, she claims, knocked her on her ***.  This morning and this evening she only took a half tablet for each dose and was still pretty tired.  Her situation is a bit more complicated as she was switching from Xanax, but then again she was a relatively infrequent user of that stuff.    It really surprised me that .5 mg would affect her so much.  She is a small woman, though.  120 pounds or a little less.  Otherwise she seems to be doing fine.

So it can make you tired.  Everyone's mileage will vary a little.

If I can go off-topic for a second, Ryan knows the person I'm talking about above.  What if she were to simply stay at .25 mg bid and never move up (provided that dose is working for her)?  The klonopin would still reach a steady state, right?  Or would it be better if she were to stick to the normal routine of .25 mg bid for three days and then go with the standard .5 mg regimen?






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193245_tn?1189993322
Thanks, man.  So even in a tiny little small person (well, she's not that tiny like a dwarf or something) .25 won't be enough for her?  She should just wait for the side effects to go away before increasing.  I was thinking of suggesting she should just stay at .25 bid even if it were having some therapeutic value plus a little placebo effect, just because it's a good idea to stay at the lowest possible dose.  But that would be "practicing medicine" and so I won't suggest it.  Plus, she's been like this for years so once the somnolence wears off I imagine she'll have to go up like the rest of us.

I was kind of thinking the split dose might have something to do with it.  And it kind of gives me an idea, actually.  If I'm having a bad morning or a bad evening and it's around dose time, I wonder if I should take .25 under the tongue and then about an hour later take the rest as normal?  Hmmmm.    I've been cleared to take an extra .5 mg as needed, of course, but I never do and I don't think I'd want to take extra and my normal dose at the same time.  But I've been on the stuff a while and splitting the doses may not do anything for me.

Just thinking aloud, basically.

You do stay up late, man!  I would if I could.  My sleeping habits are getting better, though.  

Thanks for answering.  Maybe somebody can find this on a search engine someday and it will be useful.
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