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interesting diagnosis
by cal7902, May 07, 2007 12:00AM
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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Very intelligent Cardiologist you have found. Most others would've dismissed your symptoms as "panic" or "anxiety" attacks, rather than Dysautonomia.
Dysautonomia is a malfunction of the autonomic or sympathetic nervous system. This is the system that controls your heart rate, blood pressure, vagal responses, "fight or flight" response etc. Any minor "glitch" in this very balanced system will cause symptoms (generally, dizziness, lightheadedness, fainting spells, tachycardia, intense feelings of fear, numbness/tingling of the extremities, etc). Almost identical to a panic attack, but usually with some minor underlying pathology.
There are numerous causes, including:
-Autoimmune Diseases
-POTS
-Chronic Fatigue Syndrome
-Fibromyalgia
-Mitral Valve Prolapse
-Post Viral Infections (Epstein-Barr)
-Immunization (Hep B vaccine, Flu vaccine)
At present time, these disorders are misunderstood, primarily because there is little clincal evidence to fully explain them. However, I assure you that they are indeed very real, and can be very disturbing. Perhaps in the near future, an explanation will be established.
Corgard is a beta-blocker, and blocks the effects of Catecholamines (Adrenaline) on the myocardium. This reduces tachycardia (rapid heart rate), and it may also reduce the effects of Catecholamines on anxiety type symptoms. Catecholamines are released during "fight or flight" responses, or during instances of autonomic upset.
Klonopin is a Benzodiazepine anxiolytic used to treat panic disorder. Klonopin is a central nervous system depressant, and will slow down the autonomic nervous system during periods of imbalance. This, in combination with Corgard, will greatly improve your symptoms. The drugs are NOT a cure, but will offer you great relief. At present time, this is the best combination that modern medicine can offer to you.
I also suffer from Dysautonomia, a result of Dilated Cardiomyopathy. For mine, I take Atenolol (cardio-selective beta-blocker), and Klonopin. The combination has proven to be invaluable.
Congratulations on finding a knowledgable doctor, one who made the correct diagnosis. The only thing I might add is a test to rule out Pheochromocytoma (an Adrenaline secreting tumor of the adrenal glands). This is accomplished with a 24-hr urine collection, a blood test, and a CT scan of the abdomen. An autoimmune workup would likely turn up a positive ANA in your case. This would be "proof" that your body is producing "auto-antibodies", that is, antibodies that attack the body, rather than disease. The antibodies are targeted towards the nervous system in the case of Dysautonomia.
Best,
Ryan
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
"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. "
end quote
(1) No. The 24-hr urine fractioned Catecholamines and Metanephrines are the most specific for detection of a Pheochromocytoma. No further workup is indicated here. Some labs will use the plasma Metanephrines (blood test) instead, but it is less specific.
(2) The target dose for Klonopin is 1/2 mg BID (every 12 hours). Taken in this manner, the drug reaches a steady-state plasma level which works to maintain the disorder it is helping to treat. 1/2 mg at night is not sufficient to cover an entire 24 hour period, and the plasma level would begin to "trough" after 12 hours. To assure an even plasma level, the drug should be dosed twice daily.
Corgard is typically dosed BID, which is what you're taking.
I take 50 mg Atenolol 1d, and Klonopin 1/2 mg BID.
Good luck,
Ryan
gee thanks... :o(
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.
I still owe you an e-mail!
The Caraco brand generic Clonazepam may not be as "potent" as the name brand. I know for sure that the Watson and PurePac brands aren't. The TEVA brand is very close to Klonopin/Roche in potency.
That's not to say the Caraco brand isn't *effective*, but perhaps, you aren't actually receiving the full 1 mg of Clonazepam (the target dose). I doubt that interdose anxiety is occurring (since you've only been exposed to one brand of Clonazepam), I would blame the increase in symptoms withtin the three hour window on potency instead (or perhaps, metabolism).
And, of course, everyone has a different metabolism. If 0.5 mg BID is not providing complete 24-hr coverage, it may be dosed TID instead. The extra 0.5 mg does not severely increase the risk of tolerance, nor does it "speed up" the risk of tolerance. Average doses after a prolonged period (> than four months) range from 1.5mg - 3 mg. The target dose of 1 mg daily is not an absolute, rather a recommendation from Roche based on a limited clinical trial. As with any drug, it must be individualized for the particular patient.
Before making any changes to the dosage, I'd try another generic brand (TEVA if possible). Try the new brand for two weeks and see if the symptoms improve. You may want to call the pharmacy in advance, so that they may order TEVA brand for you, before you fill the prescription.
Yes, the heart condition is rare. Folks should read this thread with a grain of salt. Sometimes there is an underlying cause for panic disorder, but usually not. It's mostly a psychological illness. IT is surprising how many, seemingly "real" physical symptoms can result from anxiety disorders.
Best,
Ryan
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?
please don't use my real name in this forum, haha. I'm one of these obsessively, intensely private people.
Sorry about using your first name. I tend to address folks by their real name.
Good to hear that the pharmacy is able to order the TEVA Clonazepam. I'll think you'll notice a difference (probably small, but a difference never the less). The main difference between the generics and the model drug Klonopin are the binders, fillers, inactive additives, and potency.
I should be more specific in regard to metabolism. It is the liver metabolism I'm speaking of. Clonazepam and most other Benzodiazepines are metabolized by the liver. Metabolism and the half-life of the drug varies by the individual. The half-life can vary from 12 - 50 hours. This is why most drugs must be *individualized*
Regardless, the drug should remain effective for at least 12 hours once steady-state is reached. That means the Caraco brand is either inconsistent, or you are not actually receiving the beneficial dose of 1 mg. Perhaps the TEVA version will prove to be more effective. If it doesn't, speak with your doctor about TID dosing.
The taper is going well (minimal withdrawal). I'm down to one, 1/2 mg tablet. Once I'm down to 1/4 mg, I'm switching to Librium 10 mg QID. 1/2 mg Klonopin = 25 mg Librium, to put things into perspective. 40 mg Librium daily = 0.8 mg Klonopin, almost 1 mg.
It takes about 2 weeks for Librium to reach steady-state. Thus, I will take 1/4 mg Klonopin for the first two weeks.
It is not my intention to withdrawal from Benzodiazepines. I need to replace the Klonopin with another one, as Klonopin interacts with other drugs that I'll be taking for my heart condition. Librium does have one thing going for it, the half-life is extremely long (about 200 hours), and it is very easy to discontinue. The downside is, it has no specific effect on panic.
Best,
Ryan
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!
Are you also taking the Caraco brand? Any observations? You'd have to take it every day to notice any difference.
I've only tried TEVA and Klonopin/Roche, and prefer the latter.
They are VERY close.
-Ryan
-end quote-
Another brilliant observation!
He's right of course, but I have no idea why. My symptoms are always worse during the start of spring and fall (particularly fall for whatever reason).
Did he give any theories as to why Dysautonomia is worse in the spring and fall?
I have a few observations that are solid:
(1) I intentionally had a complete blood count w/differential performed in late September of 2006 (just as fall was hitting the Pittsburgh area). My lymphocyte count "crashed" to 11%, and the neutrophil count skyrocketed to 85%. This is suggestive of a bacterial infection, but none was found through blood cultures.
(2) I just had the same test performed in late March, just as spring was hitting the area. NEAR IDENTICAL results (lymph = 14%, Neut = 82%)
(3) The same tests performed during summer and winter months were NORMAL, with only a modest rise in the neutrophil count.
Odd. This is most likely an autoimmune response, but with no known trigger. I actually think it's Rheumatic Fever or some variant of a Group A Streptococcal infection.
History of strep throat?
Lastly, what are your symptoms, what is there frequency, and was the initial onset abrupt or gradual?
-Ryan
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
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.
This was an old Dysautonomia thread. Klonopin has no impact on cardiac function, and is the ideal agent of choice to address cardiac manifestations of anxiety (ie: non-specific chest pain).
(1) NO Googling! Google is hazardous to your health!
(2) Start off with the suggested 0.25 mg twice daily. After three days, increase the dosage to 0.5 mg twice daily. For the first 3-14 days, you *may* feel a bit of somnolence (sedation). This will pass. Otherwise, you can expect to see a dramatic improvement in your symptoms *IF* they are the component(s) of anxiety/panic. If you do not feel much better after two weeks, you will know that anxiety alone isn't the answer you seek (which frankly, would suck).
Don't skimp on the dosage! Take it exactly as outlined above. Don't worry about anything. This drug is NOT going to harm you, it can only help you.
The only other recommendation that I might give is that once you start on one generic brand, you should remain on that brand. There are tolerance issues between the various generic forms of Clonazepam. The TEVA is fine if you start out on it, and stick to that brand. If you use the same pharmacy, this should not be a problem.
No worries. Take it and get well.
Best to you,
Ryan
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.
No, it is subtle. Starting at 0.25 mg b.i.d will further reduce the possibility of sedation. I think you'll be surprised at just how subtle it really is.
Ideally, you'd want to give the Klonopin a full, one month evaluation. If a significant improvement is not seen at the end of the month, the drug should be discontinued. It should not be evaluated until the target dose of 0.5 mg b.i.d is reached. There would be little to no withdrawal, and would usually be tapered by 0.25 mg every week. One month on, one month to get off. There's no risk involved, so I'd give it a fair trial. I really think that it'll help you.
From those who I've conversed with, the majority prefer the Caraco brand generic. However, it doesn't matter which one you choose (provided you stick to that brand in the future). TEVA is fine. I had a problem with switching from brand Klonopin to TEVA, and I felt subjectively that TEVA was less potent. I had to switch back to name Klonopin, and it is very expensive (I wouldn't recommend starting on it for that reason).
Thrombocytopenia has dozens of causes, and I wouldn't worry about it (not at all). C-Reactive Protein is also very non-specific (inflammation marker). My WBC has always been 3.2 (lower limit of normal is 4.0). I'm not concerned about it. My ANA (measured by Mayo) was 5.5 using the EIA technique. Again, another non-specific finding. Everyone will have some type of non-specific abnormailty show up if they undergo extensive testing. Nobody is "normal"!
Seeing a Rheumatologist is a good idea. Some basic testing will rule out Autoimmunity. An ANA *titer* with pattern, SS-A/B, ENA-A/B, Anti DNA, Anticardiolipin Antibodies, etc.
Best to you,
Ryan
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.
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?
Klonopin peaks in the blood two hours after a dose. Roughly 1/2 hour before it peaked, she took an additional dose. So just as the second dose was "kicking in" (or accumulating), it had an additive effect on the first dose which peaked at the maximum plasma level. That's the likely synopsis. If she would've taken the full 0.5 mg pill, I don't think the effect would've been as profound as it was.
Eventually, the somnolence passes at any dosage (well, at a reasonable dosage). It actually *decreases* once the target dosage of 1 mg is approached. Everyone is individulaized, so three days @ 0.25 mg b.i.d may not be adequate in her case. She may need to wait up to two weeks before increasing to the target dosage.
The increase would be made once the somnolence wears off (3-14 day average). Once the dosage is increased, the somnolence should not return. The somnolence is merely a side effect, and does not, in itself, represent any anxiolytic property.
It would reach steady-state, but in the area of 7-9 ng/mL. The minimum therapeutic value is thought to be 15 -20 ng/mL (1 mg and 1.5 mg, respectively). This would be for the anxiolytic and anti-panic property.
Damn, it's late! 5:30 in the morning here.
Ryan
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.