It sounds like you have a number of questions. I urge you to contact your own physician for questions regarding the appropriate treatment for your individual situation.

Jeanne

With my dysautonomia, it always seems to get worse before it gets better. Yours may be different.

What has always been beneficial to me is 1) drink 8 glasses water a day (100 ounces in hot weather or when exercising a lot), 2) compression stocking – thigh high is ideal – BEFORE getting out of bed, and 3) increase salt. This doesn’t mean junk food, because when we are ill like this it’s even more important to take care of our bodies. Good nutrition, REST (I CANNOT stress this enough!!), and reducing stress really do help limit the severity and length of flare ups. I have had this my entire life and those three things have seem me through some pretty bad flares. The worst flare up I had was when I was nearly bed bound for an entire summer. So, it does get better. It will take time, and no one can give you a specific time – not even a physician. When we have these flare ups, our autonomic systems have kicked into over gear, this taxes our other vital systems making them work harder to keep the body kicking. So, think of it as rebooting a computer. All you can do is press the reset button and wait for the darn machine to boot up. Depending on the programs loaded (ie. other chronic illnesses you may have, daily and chronic stress, whether you are taking care of yourself, measures being taken to reduce severity of flare up) the longer it’s going to take for our bodies to kick on and work properly.
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Every patient is different. It is beyond difficult for a patient to predict how long his/her own flare-up will last. To predict how long another patient’s flare-up will last would be impossible for any patient to do.

I really hope that your symptoms improve significantly and as soon as possible. I’m sorry that you are so ill.

Best of luck to you!

Jeanne

I just realized that I had missed what you said about hot showers. Dizziness during showers has been a major problem for me in the past. Back when my dysautonomia was really bad, standing up for the length of time it takes (to take a shower) was completely out of the question. I had a few minor-but-scary falls before I finally broke down and got a shower chair. I found a plastic one at CVS for under $30.00 and it was a lifesaver! The hotter the shower, the dizzier I am liable to get. Feeling dizzy/faint/nauseous is bad enough normally – but when it happens in the shower, it’s really awful! (No one wants to fall in the shower and hit their head). So, for anyone who has a hard time with this aspect, I can’t say enough about shower chairs!

Jeanne

I am really sorry you are struggling with the symptoms you mentioned. I’m sure you must be very frustrated (and probably even scared) about what’s happening. It’s normal to feel all sorts of emotions when such a challenging set of symptoms hits so hard. In my experience, getting new diagnoses always brings some degree of anxiety/uncertainty. When it’s severe enough to keep a person home, it’s incredibly stressful on many levels. You are not alone and there are many people struggling with similar issues to those you’ve described.

Hopefully, something here will give you hope and/or information that will assist you in moving forward and navigating the healthcare system to find the best quality of life possible given your personal set of circumstances.

I wish that I could give you “advice” but I personally believe that only your own (or their own) health care provider(s) can safely give you (or anyone) medical advice. (In other words, I wish I could tell you how a beta blocker would affect you but the truth is that I really can’t). Only your physician(s) can safely advise you based on your specific medical history, any contraindications you may have, etc. as to what medication might be helpful in your specific case. What is helpful for one patient may not be in the best interest of another. I believe this principle applies across all sorts of illnesses/symptoms. A medication that works wonders for one patient might harm another patient with the exact same diagnosis/diagnoses and/or symptoms.

That said, I certainly understand your desire to interact with other patients who may have things in common with you! I know that interacting with fellow patients has been extremely helpful to me over the years for a variety of chronic illnesses. So, if I seem skittish, it’s only because I don’t like ever giving anyone what I would call “advice”. I like to stick to suggestions, ideas, tips, etc. as opposed to advice.

I definitely try to give encouragement whenever I can and I can email you directly to see whether you are interested in me trying to get you linked up with some patients who have similar symptoms/diagnoses to yours if you like. I have a few specific Facebook friends in mind who you might wish to connect with (some of whom have blogs that might interest you too). Connecting with them might give you both encouragement and information. I’ll email you to see if you’d like to try to link up to the people I have in mind based on what you said in your comment. I hope this is helpful in some way.

I know you said you can’t leave the house (and I have met many people online who are bed-bound or housebound due to dysautonomia and/or CFS). I don’t know if you have anyone to help you (i.e. with transportation) and whether or not you would be able to leave home just for the length of time involved with a medical appointment – or if you are too ill to do so.

Obviously some of the comments on this thread refer to measures (such as finding an experienced doctor for treating dysautonomia) that may not be within your reach at the moment – if you are unable to leave home to see a doctor. So, I apologize in advance if the latter is the case (and if these comments potentially add to your frustration).

Sometimes patients who are confined to home and/or bed mean 100% of the time and others mean that they can leave home for medical appointments only — but are home otherwise. I’m not sure which situation you’re in. So, I’m sorry if any of what I said above just adds to the frustration… such as if leaving home to see a doctor is not feasible at this time).

So, we can connect via email and see if you’d like to link up with some of my online friends who have similar symptoms/diagnoses to yours. Sometimes it’s a comfort just getting connected to others who are home-bound or bed-bound and/or exchanging ideas for feeling better. There are a great many people active online (despite being home-bound/bed-bound) who are living with both CFS and dysautonomia. Some cases are more severe than others but there are lots of people with symptoms ranging in severity all across the spectrum. Hang in there and I’m glad you commented here! I hope you’ll keep in touch.

Endochick:

Thank you for your feedback for Lauren! Like you, I was prescribed compression stockings (mine are just knee high but my symptoms were much more short-lived than yours). I ditched my first cardiologist and am much happier with the second one. (I personally haven’t had very good luck, sadly, with neurologists… who I have seen for other issues besides dysautonomia). I’m glad you have a team of doctors that understand your complex situation and listen to you. The importance of drinking sufficient water was stressed (by various doctors) to me as well. I was also given speeches about caffeine and stress. Rest is definitely important. I think it’s really important, as you mentioned, to find a doctor who is truly experienced with dysautonomia. The difference between the two cardiologists I have seen was significant. One (the second one) was much more thorough than the other and seems to have a better understanding of dysautonomia. I really think it’s important to have the most experienced doctor possible to treat dysautonomia.

~~~

Jeanne