Aa
newly diagnosed with autonomic dysfunction
I had been diagnosed with panic/anxiety attacks for about 8 years now. My nl diagnosed me with not panic attacks but autonomic dysfunction. I started cymbalta almost 2 weeks ago. It helps somewhat. I also have had pfd for chiari. Im scared of this autonomic dysfunction tho. Its terrifying some days. I never know when or why this happens. I get racy heart and dizzy, tingly like im gonna pass out.
Just got my tilt table scheduled for Feb. 8th. We thought POTS before the chiari decompression but my first NS thought maybe surgery would help. After my third surgery (was an emergency head surgery and I was in the hospital for 10 days) things got much much worse. I am now six months post op and the pulse issues have not improved enough. I purchased a pulse monitor and found that it was much higher than I was assuming it to be and maybe this was the cause. I did go have my thyroid tested again, I have been on synthroid for about 6 or 7 years. My PCP said the number was 4 so I guess they only check one number??? I don't know enough about thyroid issues, I just have my PCP that checks yearly to update my medication. When I am standing my blood pressure just continues to go up so I don't appear to have the low blood pressure issues. I knew the pulse was weird but the PCP had my blood pressure pretty high by changing my position. I think around 170/90, If I am home taking things slow my BP runs really good, 115/70 when sitting. I am quite confused and hope I find some answers. My Hands, feet and nose are frozen :) but at night even if I get up to use the bathroom quick, I have to turn my electric blanket back on because my body does not seem to warm me back up, it is weird. I also have had a huge increase in anxiety issues but thought maybe it was just from the medical stress this year.
Sorry, forgot to say ... sometimes "helps somewhat" is sufficient cause to stay on a given medication when it comes to autonomic disorders. It's a judgment call that really only you and your doc can make. Because there's no full CURE for these conditions, you're aiming for symptomatic improvement. Sometimes it will be a combination of multiple meds that each help "somewhat" that gets you to where you need to be. The medications that treat these conditions fall into different groupings by the mechanisms by which the work and/or the aspect of the condition which they treat; combining meds from different groups can sometimes work to good effect even if each individual one doesn't necessarily work spectacularly on its own. You may want to keep that in the back of your mind. Here's an example of a "cocktail" of meds a person might take:
Midodrine for vasoconstriction (to reduce pooling of blood, thereby reducing the functional cause for tachycardia in the majority of POTS cases and/or the cause of orthostatic hypotension in various types of dysautonomia)
Fludrocortisone/Florinef for increased fluid retention (to increase blood volume thereby increasing blood pressure)
Propranolol/Inderal for beta blocking (to decrease heart rate in patients with IST/inappropriate sinus tachycardia or POTS)
There are many, many different medications that can be used in autonomic dysfunction—including POTS—so don't feel discouraged if you have to go through several before you find something (or a combination) that's helpful to you.
Midodrine for vasoconstriction (to reduce pooling of blood, thereby reducing the functional cause for tachycardia in the majority of POTS cases and/or the cause of orthostatic hypotension in various types of dysautonomia)
Fludrocortisone/Florinef for increased fluid retention (to increase blood volume thereby increasing blood pressure)
Propranolol/Inderal for beta blocking (to decrease heart rate in patients with IST/inappropriate sinus tachycardia or POTS)
There are many, many different medications that can be used in autonomic dysfunction—including POTS—so don't feel discouraged if you have to go through several before you find something (or a combination) that's helpful to you.
I apologize if you've said elsewhere and I either missed it or forgot, but did you or are you having a tilt table test to confirm the POTS? Is your whole body cold all the time, or just parts (like your extremities)? Have they tested your thyroid function (including free T3/T4, not just TSH)? Read what I said to the OP about the Cymbalta; give it a fair shake, then call the doc if it isn't right for you.
Best,
Heiferly.
Best,
Heiferly.
OP,
Autonomic dysfunction is easily confounded with anxiety disorders and occasionally other types of psychiatric diagnosis. You're definitely not alone in this. There's a great deal of overlap between the two, unfortunately, because the symptoms of panic attacks and anxiety are mediated by the autonomic nervous system ... so of course many of the symptoms of autonomic dysfunction are truly identical to the symptoms of psychiatric conditions in that some of the exact same physiological processes are taking place in the body, mediated by the same neurotransmitters. However, the underlying cause is completely different, as you now realize!
Pre-syncope (the feeling that you're going to pass out) can sometimes be MORE uncomfortable than actually passing out (or at least some here on this forum familiar with both have reckoned). It is indeed highly uncomfortable, and can be even more unsettling when you're not accustomed to it or how to handle it. The best thing you can do is to sit down/lie down as quickly as is feasible without hurting yourself and get your feet elevated. For some it is enough to get their feet either level with or above the level of their heart; others find it imperative to also have their head down so they need to be fully lying down with their feet elevated rather than just sitting. Whatever seems to work for you is fine, so long as it alleviates the "prodrome" symptoms (the pre-syncope).
With any new med, it can take weeks (and with some a month or more) to truly let your body adjust to it and know how the final effect is going to be. If you've really given the Cymbalta a "fair shake" by staying on it for however long your doc and/or pharmacist said it would take to reach full efficacy and you still feel that it isn't helping or is even making things worse, then by all means—call your doctor and let the office know that this med isn't right for you and you need to try something else! I hope this goes without saying, but never stop any medication cold turkey without conferring with your doctor, pharmacist, on-call physician, or emergency department because you never know if there may be withdrawal effects if you don't taper slowly off a given medication. The only exception to that might be if it says in the medication instructions to "stop immediately if you have the following reaction and immediately seek medical attention." Then, you know, do that. :-p
If your doc hasn't discussed non-pharmaceutical helps (like lifestyle/dietary changes) with you, let us know and we can fill you in on those things too so you have some chances at symptom improvement in the meantime while you're going through the trial-and-error process of trying to find the right med.
Best,
Heiferly.
Autonomic dysfunction is easily confounded with anxiety disorders and occasionally other types of psychiatric diagnosis. You're definitely not alone in this. There's a great deal of overlap between the two, unfortunately, because the symptoms of panic attacks and anxiety are mediated by the autonomic nervous system ... so of course many of the symptoms of autonomic dysfunction are truly identical to the symptoms of psychiatric conditions in that some of the exact same physiological processes are taking place in the body, mediated by the same neurotransmitters. However, the underlying cause is completely different, as you now realize!
Pre-syncope (the feeling that you're going to pass out) can sometimes be MORE uncomfortable than actually passing out (or at least some here on this forum familiar with both have reckoned). It is indeed highly uncomfortable, and can be even more unsettling when you're not accustomed to it or how to handle it. The best thing you can do is to sit down/lie down as quickly as is feasible without hurting yourself and get your feet elevated. For some it is enough to get their feet either level with or above the level of their heart; others find it imperative to also have their head down so they need to be fully lying down with their feet elevated rather than just sitting. Whatever seems to work for you is fine, so long as it alleviates the "prodrome" symptoms (the pre-syncope).
With any new med, it can take weeks (and with some a month or more) to truly let your body adjust to it and know how the final effect is going to be. If you've really given the Cymbalta a "fair shake" by staying on it for however long your doc and/or pharmacist said it would take to reach full efficacy and you still feel that it isn't helping or is even making things worse, then by all means—call your doctor and let the office know that this med isn't right for you and you need to try something else! I hope this goes without saying, but never stop any medication cold turkey without conferring with your doctor, pharmacist, on-call physician, or emergency department because you never know if there may be withdrawal effects if you don't taper slowly off a given medication. The only exception to that might be if it says in the medication instructions to "stop immediately if you have the following reaction and immediately seek medical attention." Then, you know, do that. :-p
If your doc hasn't discussed non-pharmaceutical helps (like lifestyle/dietary changes) with you, let us know and we can fill you in on those things too so you have some chances at symptom improvement in the meantime while you're going through the trial-and-error process of trying to find the right med.
Best,
Heiferly.
Ordinarily, I'd like to try to help with a reply, but as a Christian, I am finding your current nickname highly offensive. Maybe if you could come back with a name I wouldn't feel embarrassed about?
I have come very close to passin out alot of times, but only once that i can remember. I really am not liking the cymbalta. I think it may be makin me feel worse? Keep in touch on the chiari site. Not gettin any ino here lol
I think I am headed down that path too!! I had panic attacks diagnosed about 6 years ago but now we are looking at POTS and that aspect causing problems with anxiety. I have no idea! I had my decompression surgery nearly two years ago, still have a pseudo after three surgeries and now the heart rate is an issue. This is leading them to say POTS. I just want to find out why I am so tired and cold all the time. If I can fix anxiety too that would be a bonus. I think I tried cymbalta years ago but did not like it at all. I am very very very sensitive to medications. I thought my balance was bad from the third surgery but now I am wondering if it is just how light headed I am from the POTS! It is all so confusing at times and so hard and slow to get answers. I was frosting a cake the other day and my pulse was 137 standing frosting a cake... I am sick of the fast heart rate. Have you passed out? I have not and am very happy about that, it is just a light headed swoosh feeling and i tip over a bit and my eyes go dim. I hope the meds help you and you get this figured out!! Good luck.
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