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New To The Diagnosis, And I Have So Many Questions!


MissPatient20
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Hi everyone,

I've been diagnosed with lyme disease and tentatively with dysautonomia. I have SO many questions about the dysautonomia diagnosis because the symptoms quite frankly freak me out! My doctors don't seem to know how to treat it though, and can't answer any of my inquiries.

Basically, my blood pressure is erratic and my pulse pressure is always extremely narrow. My numbers "squish" together. My bp ranges from 80/60 to 110/80. Most often though it's 85/65, so my pulse pressure is very narrow. I also swing from bradycardia to tachycardia rather quickly. My heart rate can go from 50 bpm to 140 bpm in a matter of a second. Can anyone else relate?

I have a ton of questions, and don't even know where to begin. I've gone through a lot of the links and read a lot of things over this past week, and I've learned a lot, but it'd be great to be able to relate to some of you and compare symptoms. I'd just love to hear from anyone who has symptoms that resemble mine. Along with my symptoms, I get this awful impending sense of doom...like I'm about to pass out and die. UGH!

Anyways, if it's okay with you guys...can I post my questions on this thread, as I think of them? My brain is in a million places right now because I just had another episode where I felt like I was going to pass out and my heart felt weird and I couldn't breathe, and when I went to go feel for my pulse in my wrist I couldn't even feel it. That ever happen to anyone? It freaks me out...because I wonder if I do pass out, if anyone goes to feel for my pulse, they'll think I'm not earth-bound anymore!

Anyways, I'll stop rambling and let you guys post your input thus far ;) Thank you!

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If it's any consolation, if you passed out, reverting to a supine position would get the blood back in your head, and you'd most likely wake up before someone wheeled you to the morgue! ;)

I wanted to welcome you to the board! We've all got a ton of weird stuff going on, so I'm sure you will find someone here who can relate to what you're going through.

Glad you found us! Sad you need us!

Amy

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Glad you found us! Sad you need us!

well put mrs b...

getting this stuff is confusin, and the symtoms can be overwhelming.. Many of us have similar stuff in other ways we differ.. Like some seems to whant to live in the frigde and others is cold all the time... I am very sensitive to cold and heat.. =)

I am a fainter, it is not fun.. But its not that scary when u get used to it.. And laying down is a god thing, now i try to do it consosly, not unconsly (soory sppeling, but u understand i hope..)

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MissPatient-

Yup, I can definitely relate. My BP and pulse pressure are usually low (100/70) and PP has been as narrow as 87/80. Mornings are the worst, my BP is 101/88 and my HR is 115 bpm. I also swing HR really fast, supine I'm bradycardic (40-50 bpm) and upright tachycardic (115-180 bpm) depending on what I am doing. All these numbers are unmedicated. I'll grey-out when I get a sudden quickening of HR, whether it is just from standing up, beginning to walk, or standing still (which is the worst---your HR is supposed to slow down if you stand still! ;) )

Narrow Pulse Pressure usually means that you are hypovolemic=low total blood volume (usually plasma deficient)

If you can drink more without staying in the bathroom constantly, you will expand your volume and feel better.

I'm sorry that you are here, but glad you found us! Use the search function and I'll bet alot of your questions will be answered. Also remember that there is a main page of DINET with many pages of information and medical articles; the "What Helps" and "What to Avoid" pages were a Godsend for me before my initial diagnosis!

May your autonomic issues be short-lived and health find you quickly!

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Welcome to the Forum! I'm glad you found us, and hope that we can be helpful. I have symptoms that are very much like yours. While supine, my BP will be about 90/60, pulse right at 60 (it would be in the 30s or 40s, but I now have a pacemaker for the bradycardia); standing I'll drop into the 70s or 60s, with an average BP of 75/60-65 and a pulse of anywhere from 110-140. I'm also a fainter and a 'dropper', where all of a sudden I find myself sprawled on the floor, but I don't actually have syncope.

There's a great list of doctors on this site, so you can always look into them if necessary. Which part of the country are you in?

Cheers,

Jana

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Welcome!! Please feel free to ask me anything. Not being able to find a pulse is really common around here, it is there but hard to find. In the past, many nurses could not even get my correct blood pressure. Your blood pressure is exactly like mine used to be. You need one of the few doctors that are willing to take us on. Dinet has a list. Try not to worry, you will get better, it takes a lot of patients and determination. Love, Mary

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Thanks for responding everyone!

Firewatcher, it's morning now and you basically described what's going on as we speak! My mornings are awful. I wake up with tachycardia like you describe, and my blood pressure is kind of low. I think it's because, like you said, we have hypovolemia. Maybe since we aren't constantly drinking during the night we kind of become dehydrated.

IV fluids usually help with this, but something strange happened to me last time I got them. When they began infusing the fluid drip, I went straight into tachycardia! My heart rate shot from 50 to 140! Has that ever happened to anyone? Everyone was so freaked out, including the doctors!

Potsgirl, my situation seems somewhat similar to yours. I don't fully pass out either. I get stuck in this awful phase where I feel half conscious and half not, and I start to panic. Ick. Do you have a specific diagnosis? To answer your question, I'm in California, but I have a poor form of insurance where I can't see anyone that I want to see <_<

I'd love to hear more input from others! Thanks!

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Hi everyone,

I've been diagnosed with lyme disease and tentatively with dysautonomia.

My heart rate can go from 50 bpm to 140 bpm in a matter of a second. Can anyone else relate?

Welcome.... but sorry you have to be here. yes My heart does that and I take a beta blocker! I wear a heart rate monitor when I think of it and I have seen my heart rate go from 38 to 112 in just seconds.

Also my rate has recently gone as high as 200... funny though when I am on my recumbent bike exercising it is fine!

I have a question for you.... Lyme is very common in our area (my dogs, hubby, mom, brother and nephew have had it). How did you get diagnosed? did you have a rash? I have dysautonomia but I think I have something else going on. Would you mind sharing your Lyme symptoms?

You have found a great place. I am pretty new here as well and I have learned a ton from the caring people on this site. I am glad you found it too- Kari

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