dianaD

I take 100mg twice a day ( the same dosage that they use for acne!). I didn't change anything else at that time. But I can't say that the adrenergic stuff didn't go away all by itself... But, nothing else in the past had really helped-- even the beta-blockers would work for a couple of days, but then I would have a bad day, and the beta-blocker seemed like WATER, it was so ineffective. My friend with Shy-Dragers said that his autonomic symptoms were appreciably better in 2 weeks, and by one month, he was off his other meds. I don't know why no one has looked at it with POTS. This neuroprotective stuff is fairly new, but as an eye doctor, we are jumping on it for our patients with nerve damage (from diabetes, etc.). I can't imagine that they haven't thought about it.... Please let me know if any of you have a good response to it!! Thanks!

I'm sorry that you are going through this. As soon as you're up for it, I would get a doc recommendation from someone you trust, and CHANGE DOCTORS!! You don't need that kind of stress and humiliation. You need compassion and a caring spirit. Meanwhile, sometimes blood will get in urine samples from a few blood cells left on our "privates" from our periods. Sometimes it is from a bladder infection. Maybe it will turn out to be nothing important. Personally, sometimes I HOPE my tests turn up something "major". then at least there will be something to treat and something the doctors will be more respectful of. Weird, I know. Keep us posted!

Hi all, A few of you know this, but I thought it was time to share it with everyone. Monocycline is being used for ALS, Shy-Dragers, MS, spinal cord injuries, etc., because it can repair nerves. I had a friend with Shy-Dragers (which also begins with autonomic dysfunction). He prescribed it for himself (we're both eye doctors) when he heard of the research being done with it. In about 2 weeks, his autonomic problems were improving (prior, his BP would DROP when he stood up), and within a month he was able to get off his other meds. I've been on it for almost 2 months now, and my improvements occured fairly suddenly at the 2 1/2 week mark. I have adrenedrgic POTS (diagnosed at Mayo) and I no longer have much tremulousness nor adrenaline rushes. Unfortunately, I still have trouble breathing, though. I'm going to discuss it with the docs at Mayo next month, and I have an appt. with Dr. Grubb in Sept. It doesn't appear that docs have tried this drug with POTS yet, and I can't imagine why. I am usually reluctant to discuss a treatment before it is "proven", but with pots, all treatments are what we call "off-label" anyway! And, this drug (an antibiotic used to treat ACNE!) has been around a long time, and we are aware of its side effects. It is oral, not very expensive, and familiar to docs. HOWEVER, they may not be aware of the neuroprotective effects of minocycline. My neurologist was familiar with the research, and decided to try it for me. I will never know if I got better because of the minocycline, or if I was destined to get better then, anyway.... But NOTHING was easing the feelings of too much adrenaline. Now, that's gone. yippee. I'd be happy to answer any questions you have. Neurologists are the most likely to know about the drug, because it's effects involve the nerves... Hoping and praying,

Boy, that's a tough call. I would go to whomever I felt would give me the mestinon (probably the nicest one), or to whomever you think is most comfortable treating you. I'm so sorry about your troubles and the problems you face with your kids. You must be a strong woman -- taking care of 2 healthy kids has me at the end of my rope sometimes. Keep us posted how you're doing!!

I love this post!! This will sound so lame after all of your cool ideas, but my hubby and I go to Starbucks, sometimes in the middle of the day if he can get away. (It has to be on a day that I'ved washed my hair atleast 3 days prior!) They have those big over-stuffed chairs that I can lean back on. And I love their decaf cafe mochas!! I almost feel normal again when we're there... Sometimes, we'll put the kids to bed and sit outside in our gazebo, looking at the stars, and sipping a little adult beverage (really helps the sleeping pills kick in!!). I look forward to more ideas!

please let us know how you're doing with that. Difficulty breathing has always been my worst symptom. Have you had any pulmonary tests done? Mine shows that my ability to inhale and exhale is about 50% of what it should be. It seems to take me twice as long to get in a breath as it used to. They think it is nerve damage somehow, or cramping of the auxillary breathing muscles, or something. Basically, they blame it on POTS, but nobody can say why. Aghhhh! Diana

I'm so sorry you don't have any answers yet. Does your son have headaches, too? Have you considered Chiari I malformation (I think that is how it is spelled...)? What does your doctor want to check next?

Julie, My pastor, and this illness is trying to teach me to "wait to worry". I have seen so many times, with myself and others in not too dissimilar situations, that the emotional trauma from worrying is almost always worse than what we are worrying about, which doesn't end up happening 95% of the time anyway! I know it is hard, but can you wait to worry (WTW" we call it)? You are in excellent hands. Let them do all the worrying until you know otherwise. That's why they paid the big bucks, right? Right now, your focus needs to be taking care of yourself, relaxing when possible, and getting through those tests. We will be praying for you, but meanwhile, try to just set those worries aside until and IF you need to focus on them later. Easy to say, but hard to do. Hang in, Diana

I am so sorry you are going through that. I know that I have had days where it would have been OK if I didn't wake up -- the will to keep living just wasn't there -- and I have the full support of my husband and kids!!!! Do you have any friends you can lean on? My best friends are ones who have gone through cancer and other horrible conditions and they have incredible empathy. It's seems weird, but I think we have to look for just the right friends, just the way we look for just the right docs. If they don't get it, keep looking. Hang in, there. During those really bad times, I tell myself that "this too shall pass", and it does, atleast to the extent that i feel the will to live again!!. I really think this condition somehow affects the brain and it can feel so hopeless sometimes. BUT IT IS NOT!! They are doing research, and the researchers are taking it seriously. I pass around Dr. Grubb's articles and Vanderbilt's articles that mention how incredibly disabling this is. I make sure my docs have them, too. That seems to help. We are here for you! Diana

Hi, Your post intrigued me because I, too, would like to see how to REVERSE this. I noticed you were on doxycycline and have a question for you and your hubby. Minocycline is being used/tried for MS, ALS, spinal cord injuries, diabetic retinopathy, Shy-Dragers, etc. My neurologist and I decided to give it a whirl because of its neuroprotective abilities. 2 1/2 weeks after I started it, my hyperadrenergice stuff STOPPED. We, of course, can't say if it was the minocycline or just a coinky-dink. I am staying on it for now, though. It might be worth asking your doc about. (Minocycline was recommended to me by a friend with Shy-Dragers). You can google "minocycline nerve" to see many of the stuff it is being tried with now. I've been on it 2 months now. My shakes and over-responsiveness is pretty much gone now, but I am in no way asymptomatic. I still have a LOT of trouble breathing, and have mid-section pain, some gastroparesis, etc. But to not have the shakes is a total blessing. As far as I know, stem cell research is NOT being explored with POTS. Thanks,

Hi, I certainly have episodes like this. It's funny because before I was diagnosed, my cardiologist asked if I ever got light-headed. I told him "no", so he chose not to do a TTT. Now, if he had asked if I had "out of body experiences", then the answer would have been "absolutely"! The last time it happened, I was on the recumbant bike, but I just kept on going, and it got better. For me, i think the episodes are from blood not going where it needs to go somewhere in my brain. I am one of those FREAKS, whose BP goes UP with exercise or standing, so I know my blood vessels are capable of constricting. My guess is that there are constricting too much somewhere, causing the out-of-body sensation. Many times when this happened, and I almost DID pass out (got tunnel vision), I was lying down. That just confounded the docs. Many docs think that POTS is POSTURAL, therefore we should be asymptomatic when lying down. We need them to know that we have symptoms in all postures!!! Agh!! See you in the clouds! Diana

I used to have a lot of them. Plain ol' ice on my neck helped. I got a wrap-around ice pack, and it really did help. The earlier I could get it on my neck when symptoms started, the better. I hope that helps...

I'm so glad that worked for you. I tried it when I was really hyperadrenergic and I couldn't tell a difference. But I felt like it was a teaspoon against the ocean at that time. Now that my wired feeling has lessened, I'll give it another try. Will you let us know if it continues to work for you?

Yes!!!!!!!!!!!! It's like my body has lost the ability to know when to eat, or it misreads cues somehow. I pretty much eat all of the time, because I have ZERO tolerance for being hungry, yet I fight nausea to some degree 24/7. But it is a weird nausea. Not the commode-hugging kind, but the more like the mild morning sickness kind. I check my blood sugar, too, and even when I feel like I'm starving, my blood sugar is not low. Weird.

Hi Rhonda, The TTT is no fun, but if I were you, I would EMBRACE anyone who was trying to help you and try to tolerate another test. The way I see it is that I could be really miserable in a test, but I guarantee that I will be miserable later at home, and wishing that they knew ANYTHING that could help. I'm afraid of regretting it if I don't do everything possible to try to get some relief. But only you are in your own skin and know what you can tolerate. I hope you discuss your fears with your doctor so that he/she is aware of how difficult it is for you and they can try to help you in any way possible. Good luck!

Welcome! We will all be eager to hear yur questions and any comments you may have. We are all here to help each other in any way possible. Looking forwarding to hearing more from you!

Sophia, The prognosis you were referring to I believe is for progressive conditions, namely, Shy-Dragers. Are you sure that you fit the description there? Did Dr. Grubb say that yours would progress, or that yours may not improve? Watching my friend die with Shy-Dragers, the differences in our conditions jumped out at me. He was a triathlete who progressed quickly and died in 3 years. It was extremely aggressive. Sometimes I wish this condition would get worse if it can't get better because being stuck in this condition is so lousy. Are you stuck or do the docs think yours will worsen? We're here for you, Sophia.

What a gut-wrenching question! It saddens me so to hear the desperation in some of your voices, knowing that desperation is often in my voice, too. Thankfully, my condition waxes and wanes and right now I'm feeling better than usual, so it allows me to be more optimistic. I have made a couple of life-long friends with this condition and that would not have happened if I was well. I DO have more empathy for others and am COMPLETELY comfortable with sick people, and that is a new thing for me. I was happy to regularly visit someone with Shy-Dragers who became a dear friend before he died. I would have never felt comfortable doing that before this illness. It's true, I can walk into any nursing home and be completely comfortable with the residents!! We can talk medicine and will have a lot in common! Ha. It has made me open my eyes and truly question my faith. I think some introspection in that way is a good thing, and I am happy that my faith has survived this illness. I don't rush people any more, because I have so much to do and need to get going -- "sorry I really can't chat right now" doesn't happen very much any more. I spend more time laying around with my kids and really TALKING to them and, more importantly, LISTENING. My husband and I worked together before I got sick, so now we never fight about work! He can just be my hero now and that has been good for us. I think it has been good for my kids to be around someone who isn't perfect. It makes them more accepting of others with disabilities and makes them more aware of the struggles that others go through. They just seem more mature and empathetic than most kids their age. I will confess to you that there were many times that I just felt like I was waiting to die. But when I can get on top of the symptoms, instead of visa-versa, I am glad I am still here. Hang in everyone. You are not alone.

Sunfish, We are all thinking about you and hope that you'll be outa there soon! Hang in! Praying for you, Diana

Hi, Im going to buck the trend here. My symptoms are on my RIGHT side. But it isn't weakness per se, but those horrible shakes. But why the right side? My neurologist just shrugged, and said, "Well, it is a neurological condition". And one we don't really understand, too.... Sometimes it feels weak, but when tested, it is just as strong as the left side... Weird. Aren't we special?

Hi, I am certain that you need to be OFF of the beta blocker for a couple of weeks before the test. If your heart rate went up the way it did while you were ON the beta blocker, I'd bet you my entire collection of pills, that it would go up the required 30 beats in 10 minutes if you were off of it...

Lily, I can SO relate to what you are saying!! But I don't know what to do about it! I alternate between hunger that is just not appeased, and nausea. I feel better sometimes when I eat, but I've never had true low blood sugar (and I check it!). I'm sure it is somehow related to dysautonomia. I just wish I knew what to do!

this is great info. Thank you. I have a "military neck" and was just told that i have no curvature to my back now, either. I did kind of wonder of that could put , more pressure at the base of my brain.... And my heart palpitations are worse... Yikes.

That's me! I also get a sense of fullness in my midsection when sitting and a sqeezing pain. If I can lean back, I do a lot better. I'm suspecting that mine is a case of blood pooling in my abdomen, but who knows? Know that you are not alone, though. I am not convinced that the docs understand that this happens to us... It makes me NUTS dealing with it! Even sitting in church is really tough! Hang in!

Hi, I'm pretty sure that is a syndrome for people who have mitral valve prolapse problems. If you've had an echocardiogram and there's no mitral valve prolapse, then I think you would be considered "plain ol potsy".