Honestly, I have grown accustomed to poorly understood conditions affecting me. I’m used to having to advocate for myself and do my own research to prepare for appointments with doctors. So the good news with this situation, however scary it did get at the “rock bottom” I had a few weeks back, is that I was equipped to seek out appropriate medical help. Also, it is wonderful to have access to such great information online. Last but not least, awesome (in real life) friends like you are always there for me!! I feel really fortunate, actually!

Jeanne

Yes, I remember you… my twitter friend.

I’m sorry I’m slower-than-usual in moderating comments. These dysautonomia posts are really keeping me hopping!

Yes, I have been reading quite a bit about the autonomic nervous system lately. It’s amazing how a “mayday call” from our bodies can motivate us to research as quickly as possible to get up to speed.

In my case, my blood pressure was very low in the first few weeks of this “episode”. Then it started spiking up and down (too low and then shooting up too high within a short span of time). Also, my pulse is low (both when BP is low AND when it’s high)… far lower number of beats per minute than I have ever had before.

Interesting. I haven’t come across any references to age as a factor. Do you know of any research studies on this? Yes, I have learned the crucial importance of standing up slowly. My body taught me that lesson early on. I have tried to bear it in mind because sometimes when I’ve been feeling (relatively) better, I forget… and my body gives me unpleasant reminders.

It’s interesting to me how very many people I have encountered in these last few weeks who have dysautonomia in some form along with various other chronic illnesses. I have seen some writings about it being considered a co-existing condition to a couple of specific chronic illnesses (at least one of which I have). I haven’t found a ton of research to support links to particular illnesses co-existing with dysautonomia as of yet but I think part of that is a sheer lack of research. I agree that paying attention to warning signs is important. (For example, I had my husband drive me around when I didn’t feel safe to drive due to symptoms like feeling faint).

I need to meditate more often than I do. I LOVE acupuncture!!! I hadn’t heard anything about water immersion in relation to dysautonomia. Does that help you?

That’s awesome that your acupuncture is helping you! I haven’t had that specific type. My acupuncturist does Japanese acupuncture (a combination of Manaka and merdian therapy). That’s fantastic that you’ve gotten such benefit.

Thank you so much for your detailed & thoughtful comment.

Have a wonderful weekend!

Jeanne

P.S. I just left you a comment on your post about the acupuncture you get.

Dysautonomia is when the messages are not correct eg the blood pressure my rise suddenly or fall suddenly with sometimes loss of consciousness. You may get a very fast or very slow heart beat. You may sweat inappropriately etc.

Dysautonomia is more common as we age. We can do things to cope such as getting up slowly to give our body a chance to adjust.

I got dysautonomia, I think, because of the stress of chronic pain for a long time. I notice you have chronic pain. If its decided you do have this it’s wise to pay attention to warning signs of drops in blood pressure.

Things which bring about balance between the sympathetic and parasympathetic nervous systems could be a great help eg meditation, acupuncture, immersing in water etc.

My dysautonomia was corrected by Yamamoto New Scalp Acupuncture, developed to treat neuropathic problems and stroke.

Hope things improve for you soon.

There are so many conditions that can cause dizziness, lightheadedness, and “feeling drunk”. I think this is part of why people have such difficulty obtaining proper diagnoses. My husband had vertigo a few years back and what he had seemed different that what I have been having. Both involve the symptom of dizziness. However, there are differences. Neither he nor I experienced mood swings in conjunction with the dizziness and other symptoms. Amanda blogged about labyrinthitis HERE.

It does sound like different causes for your dizziness and mine. However, I appreciate the thoughts!

I wish you the very best of luck with your upcoming IV treatments!!

Jeanne

That’s interesting. I had used caffeine to help me through that first 3 weeks. Then my PCP told me to avoid it. Then my cardiologist said the same thing. Was your blood pressure too low when you woke up?

I’m sorry you went through all that. I’ve heard you talk of the smoke smells but I guess I never heard the “beginning” going back to last summer until I set out to write these dysautonomia posts. My husband has had those mini-seizures. He gets really, really tired afterwards. One might only last a few seconds but the aftereffects can be brutal.

Jeanne

With your feelings of faintness being your primary complaint (and this not something I really dealt with), it doesn’t sound like we are probably dealing with related issues, but just wanted to let you know I feel for you! {hug}
Jenni Saake – InfertilityMom´s last blog ..Happy Birthday to Me, My Gifts to Thee…