futurehope

Hi! Other than the people who think they may have been born with lyme, do any of you remember a time in your life when you could honestly say your autonomic nervous system was relatively normal? In other words, is there a "before" and "after" lyme? Can you remember? Thanks.

I'm so happy to hear how well you feel. May you get better and better. I would love to know your medicine regimen - in case it could give me any ideas. Thanks.

I'm so sorry you had to endure such stress. May it never ever happen to you again. God bless you.

Kel, Just an added side light. Remeron can make you worse. I do not know how long you've been on it. Maybe you're adjusted already. But the Remeron brought my POTS out of the closet. I believe it is on a list of meds that can make us worse.

Wishing you the very best and that you recover the olfactery nerve sensations. I can relate to feeling that your body is failing you. One thing I remind myself of as often as possible is that "by feeling bad" and "entertaining self-pity" I know nothing will change, except my immune system. I noticed that when my spirit is down, my immune system and body actually suffer. It's really difficult when different parts of your body don't work. I hear ya. But try your very best not to let the "down feelings" take over. You can be victorious over this.

You guys are great. Thanks for the references. I especially enjoyed the CFIDS article. Now.......... I just have to adjust to the fact that there are several different body systems of mine that are unreliable and unpredictable on any given day. And it's really difficult to find a consistant help for all this. Sheesh! You know what? I think we all deserve some sort of heroic medal for having to deal with all this on a routine basis.

Thanks, Nina. As you can tell by my post title, I have already found the name for this. Well, at least I know I'm not the only one. I'm going to ask my doctor (when I see him in October) if this is usually treated. How did you find out this is common? Did I miss something in the description of this ailment on this website?

I notice frequently that when I measure my BP the difference between the systolic/diastolic is less than 40. For example, 120/80 is "normal". Well, I hardly EVER have 40 points difference in the numbers. It's usually 34 points different. When I'm really bad off, the numbers are even closer together. Well, the internet look-up of this said this is called the "pulse pressure" and that a "low" pulse pressure is indicative of shock and low perfusion (getting of oxygen to the organs). Dah!!!!! Obviously, I have low perfusion to the brain (make that, it's difficult to think or I don't even want to think). And in my everyday life I often feel like I'm in mild shock (no blood up there where I need it). I already know I have decreased blood volume (via testing), so ...... Does anyone else notice this? What do you all do about this? I guess the florinef (if I took it) is supposed to help with this, right? What is one to do? Just wondering???

I suggest you call the doctor who prescribed them and ask his/her opinion.

I found that it helped when making my appointment to ask the receptionist if the doctor treats neurally mediated hypotension? If they answer "yes", then you at least get a doctor that has a clue. Obviously, your doctor was unfamiliar with the POTS part of MVPS. I'm sorry you expectations were dashed.

It was the most stressful year I have ever lived through as I waited through 2 denials and the final acceptance, but well worth it. And absolutely necessary in my case. I had already proven I couldn't work, not even part-time. BTW, I acquired a lawyer at the second denial. Good luck.

Wellbutrin made me more hyper and kept me from sleeping.

Welcome to the forum! You haven't been here long enough to notice that there are many people on this forum who are taken seriously by their doctors. The well-known doctors mentioned on this forum include, but are not limited to: Dr. Grubb (Medical College of Ohio, I think), Dr. Low (Mayo Clinic), Dr. Robertson (forgot where), Dr. Baggioni(sp?), Vanderbilt in Tenn. has a clinic, Dr. Goldstein at NIH, etc. My neurologist in Maryland understands this ailment and there are countless other cardiologists, electophysiologists, etc. who understand. Please do not freak out. I don't know where you live, but I'm sure you'll find someone to help you. As a matter of fact, who diagnosed you? They certainly knew something.

I really don't know how they could come up with any numbers unless they actually did a study. Maybe in that particular practice, they've kept notes. Anyhow, I certainly want you to be in the "1/3" that gets better. Wishing you the best.

Good articles. I didn't necessarily understand fully the one on anesthetia, but it does make you realize that the anesthesiologist DOES have to pay more attention to the likes of us. Maybe if you handed the surgeon and the anesthesiologist the article, they would then know the questions to ask your POTS doctor before the surgery.

Dear Suzanne, The thought occurred to me that you yourself may not be familiar with this syndrome and that is why you are questioning this psychologist's assessment of you. Are you the one who decided that a psychologist was what you needed? If so, I apologize for the negative language in regarding this doctor's opinions especially if you yourself are not familiar with POTS. It would be in your own best interest to learn as much as possible to build up your own confidence regarding this syndrome so that when, indeed, you have to interact with someone, they will sense your confidence and your knowledge and they will not be as eager to question your symptoms. Good luck, dear.

Suzanne, Fatigue and orthostatic intolerance are my two biggest symptoms. I'm functioning at 20% of what I used to because of fatigue. I cannot work. I just found out that I have less blood circulating in my body than is average for my weight/height and less red blood cells as well. Combine that with blood that pools upon upright posture, and that is a recipe for fatigue. The test that was done to find that out is NOT one of the usual blood tests like a CBC, or a hematocrit. That is not to say that one cannot suffer with depression and or anxiety. Who wouldn't be anxious trying to drive a car while dizzy and lightheaded? Maybe you could show the psychologist one of the brochures that this website produced. I've often given them to people or doctors who need to know. The brochures are great! It really upsets me to hear someone tell you something about this ailment when they OBVIOUSLY know nothing. And don't get me started about that psychosomatic stuff!!! That really gets me hot. Yeah, we all decided that life was SO great, that we had to mess it up by getting fatigued, and feeling poorly. Yeah! Yeah! Yeah! Blah! Blah! Blah! This psychologist sounds like she thinks she understands. Well, believe me. She doesn't.

Jaime, Treatment wise you certainly sound like you are getting what I could use, namely higher blood volume via the florinef, and higher rbc's via the Procrit. I'm really happy to hear how well you are doing. I'm just curious, had you EVER been tested for whole blood volume and red blood cell volume (in the same test)? What were your results? Were you mildly hypovolemic or moderately hypovolemic? How bad WERE you without these treatments? The reason I'm asking is my PCP does not think I should be starting the "steroid" just yet in my life. She thinks I'll eventually need it but I should hold off as long as possible.

I PM'd you. Check it out.

Have you ever taken florinef? Did it work for you? Are you still taking it while on procrit? I've come up with these questions because I am now aware via blood volume testing that I'm mildly hypovolemic and have a "mild deficit" in red blood cells and blood plasma. My doctor suggested Florinef. I guess this would increase total blood volume, but I don't really know what it would do for increasing the number of red blood cells (which was the lowest count of the three counts I had taken). So, I know procrit is supposed to increase the number of red blood cells and I was wondering if you had ever taken florinef to increase your blood volume and did it do anything? Thanks.

IThomas521, If you take "licorice" in what form, how much do you take and how often? Does it need to be with food or on an empty stomach? I want to try licorice but have not idea how much or what form or how often. Thanks.

I'm not sure why the recipe calls for three different salts: salt, baking soda, potassium chloride? Baking soda is a palatable way for me to get extra salt in my diet without the nasty taste of plain salt. I found this out by accident when I used the baking soda for heartburn and found that I was feeling a bit better because of the increased salt.

Thanks Maggee. Just the info I was looking for. Have you ever been on Florinef? Did it work for you?

Okay, the doctor's secretary called me with the results and said there is a 10% deficit in my blood volume test. I know from reading this forum that I should have three results, one for total blood volume, one for red blood cells, and one for blood plasma. I asked her to fax me the results so I could see them. (She needed to get them off of the doctor's desk. That's why she didn't know the three scores.) She also said the doctor is willing to prescribe the fluorinef if I want it. I said okay. I know fluorinef has been discussed MANY times before. I'm being lazy here (in not doing a search). If you take fluorinf, what is your dose and how are you doing? There are probably as many different answers as there are patients taking this med. I just want to know how you are all doing? Are you taking a potassium supplement with it? If so, what brand, what dose. Thanks in advance. P.S. I feel vindicated. I'm actually happy to know that some numbers in a test came out abnormal. After all, how many people walking the street could lose 10% of their blood volume and feel all right? The question I now have is WHY? How come my body does not make enough blood? So weird?!

When I get this, it usually means my esophagus is irritated. I have GERD (reflux) and a hiatal hernia and I tend to get this fairly frequently when my medicine is not working as good as it can (for reflux) or I ate a food that I know irritates me. If you do not know what is causing your symptom ask a doctor to check it out. I'm not sure if this is a POTS symptom per se.