jangle

It could be your body is increasing blood cells to combat the infection, which effectively acts to increase blood volume.

That's interesting, it could be the illness triggers a compensatory mechanism in your body, maybe something to do with aldoesterone-renin from the kidney which alleviates your symptoms. I'm not sure about the immune system involvement but there could be something there too. Usually when I get sick I get worse so I don't have any explanation.

After reading your story, I no longer feel any desire to moan about my own symptoms. I know it brings you no comfort to hear this, but your case seems like a severe presentation of dysautonomia. I think you would be best served visiting a Mayo clinic where people who're experienced with your condition can spend a length of time finding the correct management. There are other things that can be tried and I hope they will be of use to you.

It's inspiring that you are still furthering your education and pursuing a graduate degree and I wish you all the success you can have there.

Please update us on your status.

Before my neurologist referred me to an even higher level specialist, I asked him about the potential for brain damage. He replied that the body will pass out before brain damage would occur, but if you land on a heavy object or if someone held you up for about 3+ minutes then you would suffer brain damage.

When I went to the even higher level specialist for my diagnostic testing, (This guy was voted the best doctor in America and in addition he is a professor at a top 10 medical school in the USA) he said that the brain has its own auto regulatory system which would prevent damage, but that once a critical blood pressure has been reached, the brain will automatically engage the syncope reflex.

However, some recent studies have demonstrated that in fact people with POTS do have reduced cerebral perfusion, and when I read studies like this:

http://www.ncbi.nlm.nih.gov/pubmed/13680276

http://www.sciencedirect.com/science/article/pii/0006899394903948

http://stroke.ahajournals.org/content/25/5/1022

All of these studies basically showing brain damage from chronic states of hypoperfusion. Now granted the length of the hypoperfusion is on the order of months which in rat time would correspond to years in humans. Additionally the levels of hypoperfusion were in the order of 25-60%. However, I think with POTS some people on this board report >30% reduction and studies are all over the place in regards to what our actual hypoperfusion levels are.

Is there a disconnect between emerging medical science on this issue? The doctor who told me not to worry is like I mentioned a highly respected researcher, professor of medicine, and internationally recognized clinical practitioner. But I'm wondering if he's going off an old philosophy that our cerebral perfusion isn't compromised.

It might be a possibility in some patients with OI. A lot of members here have had echocardiograms which didn't reveal a reduced stroke volume, so I don't think this theory can apply to all OI patients.

Also one has to question the issue of causality. For instance a lot of people who have OI might be prone to not exercising, and if they don't exercise for a long time that might result in a diminished LV heart size through deconditioning.

Ok, it's not a cure, but one component that has reduced my symptoms (lightheadedness and headache) is progressive muscle relaxation. I tried to speculate on why this is, going through some journal articles, the most I can come up with is that PMR (progressive muscle relaxation) activates the parasympathetic nervous system which might balance out my autonomic nervous system.

Anyways I notice that the amount of my improvement corresponds to the quality of the relaxation exercise. Usually a good relaxation cycle will take between 15-30 minutes of time. For those unfamiliar with PMR, it involves tensing each muscle group individually in your body and releasing the tension slowly. So for example one might tense their right foot for 10 seconds and then release the tension to a count of 15 seconds.

Then they will move to their right calve muscle then to their right thigh, then left foot, left calve, left thigh, hands, arms, buttocks, back, shoulders, and neck.

The relaxation is maximized by prolonging the release of the muscle group. Really aim to take between 10-15 seconds releasing the tension in the muscle.

After each muscle has been relaxed, the mind becomes more amiable to meditation and imagery based relaxation. After PMR I go on to try meditation which increases the relaxation response.

Aftwerwards I can definitely notice a reduction in pain and lightheadedness symptoms. In addition it seems to lower my standing HR by about 5-7 bpm.

Anyways, hope this technique might be useful for others.

In the past I've noticed it's nearly impossible for me to sleep sitting up, as I get more sleepy my brain will shoot this massive wave of lightheadedness my way almost causing me to pass out. However, if I use a pillow I have sometimes been able to fall asleep sitting up.

My question is, is this dangerous for us? If our brain's weren't getting enough blood, would it wake us from sleep? Sometimes I've woken up with my head feeling numb.

I think a specific number is arbitrary, but that a large volume of liquid is going to have to be drunk, one way or another. In time I have come to find my bladder possesses super powers! But wow, that first week and my bathroom was my new best friend.

Eventually you'll adjust.

Hey Atomic, I know things in your life seem really difficult to deal with right now. But at the end of the day I think we both know that at some time you're going to be feeling better. It's just right now in this moment you have this thing, (we call it POTS) that's holding you down. It's ok, and yes you mention you have anxiety as well. I know how bad anxiety can be as I myself have had anxiety disorders all my life as well as panic attacks, but you know even those things can be treated. However, they can't be treated effectively while you're dizzy and in constant pain from the POTS.

So while we're stuck in this moment in time with our POTS, we should try what we can do to get better. You mentioned that you haven't been officially diagnosed yet. For me what I said was that my heart rate lying down was 70 and when I stand up it goes to 120. The doctor then promptly checked my HR lying down and standing up. Then I got referred, and had a TTT without any needles or anything like that. My TTT just involved placing some electrodes on my body (just on the skin not "in" the skin) and tilting the table up. I did feel dizzy, but not really anymore than I ordinarily feel when I stand up.

I would recommend following my approach by just going to a local neurologist. It's essential that you have some type of professional medical guidance on your path to recovery.

Apart from that there are things you can try to do such as increasing your salt intake + compression stockings + exercise. These might ameliorate your symptoms somewhat. I know these things have helped alleviate some of my dizziness.

I'm sorry to hear about your mother and I hope you're able to make peace that you weren't able to earlier. This path you're on is going to require a lot of strength and support, and I'm sure your mom will be there for you in other ways along this trek.

Before I knew I had POTS I started a jogging program. Basically I just tried to jog a little bit further than the previous day. I found my body was able to catch a "second breath" sort of speak so that even when I got tired eventually my body was able to acclimate while keeping the same pace. This effect got prolonged enough to where I was jogging around 20-30 minutes a day.

Everyone is different so it's hard for me to make recommendations in general. I would say to start slow but to expect your body to eventually acclimate to the exercise. It feels really bad I know, but hopefully in the long run it will improve our symptoms. Just like chugging salt water tastes nasty, it's just one of those things you have to endure for the improvement. So sorry you have to experience this, hopefully one day there will be an easier treatment for us.

I just got my compression stockings, I've worn them now for about 3 hours and I'm feeling a lot better. My standing HR is now in the 90s as opposed to the 110s, I still feel a little headachey and lightheaded but hopefully these will pass. Has anyone noticed continued improvement with stockings or what you get at first is pretty much it?

I definitely noticed cognitive dysfunction when I first got POTS when I was 17, especially when it comes to working memory and attention. I haven't really noticed a decline since then (6 years now) and I was able to be very successful in college. However, now that I know what I have is POTS, I'm wondering if it's possible to reclaim my previous cognitive function. For people who have gone into remission, did you find your cognitive ability was roughly where it was before you got POTS?

I've read that other people with pots have a postural like tremor. For me, about 5 months ago I developed a postural tremor in my fingers. Whenever I bring my fingers close together, they start to tremor, it seems to only happen when my fingers are close to another finger.

I was wondering what was causing this?

I'm worried that this is signaling that I have brain damage in my cerebellum and is representing an essential tremor like effect.

Has anyone talked to their specialist about their tremors? Could this be related to POTS in another way other than brain damage?

Sorry to hear about your relapse, I'm not too familiar with waxing and waning POTS as my symptoms have been pretty much constant over the 6 year period.

It is great though to hear your positive experiences with exercise. I hope that I can titrate up my workouts to where I'm seeing benefits as well although I expect it's going to take several weeks.

Hello all, since exercise seems to be at least one component of getting better I'd like to make a thread where people discuss their exercise regiments, the progress (or failures) they've encountered and a place where we can support each other to stick with our goals.

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I'm just beginning my exercise regiment over again. In theory what we're trying to do is mimic marathon runners. Several studies such as this one http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1498337/pdf/bmjcred00606-0026.pdf

show that for fit athletes, their resting heart rate goes down significantly. (In the study, some of the most fit athletes have resting heart rates of 30-40!!)

I'm not sure why this is but my biology professor remarked that their venous return gets to be so strong that the heart barely has to lift a finger to get the blood back to itself.

Unfortunately it seems like it takes rather high levels of fitness to achieve some of the lower heart rates, but in theory it should work for us.

I think the major areas to target is aerobic exercise for general fitness and then weight lifting for the calves + thighs as well as daily abdominal workouts. Working out the abs should have the highest effect since this is where most of the blood pools in OI patients such as ourselves.

Hope to hear from you and remember,

get better!

Interesting that the groups performed similarly on the n-back tests while supine. This seems to suggest that neurocognitive dysfunction is not permanent and may be reversible.

Ya, I do think there are some quirky features about this particular study, especially in regards to the inclusion criteria. However, I do think there is a common unifying trait that is shared among all POTS subgroups. That is we all suffer from hypovolemia, and that things such as saline IV's seem to work for the majority of patients with POTS.

I was reading about new therapies targeting the renin-aldoesterone axis, however ignoring pharmaceutical agents it is actually well established in the literature that exercise directly influences the renin-aldoesterone axis to increase blood volume.

Perhaps then a more likely reason for why exercise improves POTS patients is increasing the skeletal muscle pump through muscular strengthening as well as correcting an abnormal renin-aldesterone axis to correct for our hypovolemia.

I was reading this study, http://content.onlinejacc.org/cgi/content/full/55/25/2858 which suggested that some patients with POTS might not have dysfunctional autonomic function at all (unless you consider the abnormal aldoesterone to renin ratio to be caused by autonomic dysfunction which I honestly have no idea if it is or not, that's more medical sciencey stuff than I can handle.)

I know that POTS is caused by a variety of conditions, but the authors of this paper seemed to convey the message that not one of their patients had autonomic dysfunction. Could that have been a coincidence that they just happened to select a patient population with one particular type of anomaly? If so, would it be reasonable to conclude that perhaps this cardiac origin of POTS is the most common?

I just found it interesting.

Edit: My name is Eric btw. I feel so special being a male when it seems (attractive) girls get this condition!

I want to thank anyone for reading this, honestly one of the greatest feelings to have is to know what's going on, what to expect, and to have a plan to address it, even if it is totally out of control.

Right now I don't feel like I have sufficient information. I'll try to keep this as brief as possible.

I started feeling chronically lightheaded around the age of 17, especially upon standing up. Doctors attributed it to anxiety, (I also have two anxiety disorders) and I believed them somewhat. I remember I wanted a tilt table test back then, but the doctor checked my BP upon standing and it was normal. Fast forward to now, I'm 23 years old still feeling lightheaded only now I had a TTT and it showed my HR goes to about 120-125 bpm upon standing. (From 70s) I do think anxiety has some component in this as my lightheadedness gets really bad during panic attacks (I have panic attacks daily) and when I purposely hyperventilate (I think I might be hyperventilating all the time)

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Questions

I asked my doctor if having POTS causes brain damage, and he mentioned the brain has an auto regulatory system that prevents this. Still, I've read studies on mice with chronic hypoperfusion that showed alterations to brain cell function.

1.) Does POTS lead to permanent brain damage?

2.) Does having POTS put us at a huge increased risk of strokes?

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Treatment options

1.) I started to exercise last month before I knew I had POTS. I got up to about 30 minutes of jogging 6 times a week. Unfortunately I didn't keep this up and stopped about 4 weeks later. Now that I heard exercise can be a treatment for POTS I'm starting up again, and I might want to try to incorporate some weight lifting as well. However, I didn't really notice that much of a difference after 4 weeks of jogging, so I don't know how much I can expect to improve, but the study I was reading showed a 12 week exercise regiment of slightly higher intensity so maybe I'll improve if I just devote more to it.

Has anyone undergone a rigorous exercise program (12+ weeks of 6+ hours/wk heavy exercise) if so, what were your results?

2.) I got started on Midodrine, I've taken 5 mg doses, and I get all kinds of goosebumps in my scalp, it lowers my standing HR but doesn't seem to effect my lightheadedness. Is this normal in the course of midodrine treatment? How long until improvement can be expected?

3.) I put about a teaspoon of salt in a water glass and find that improves my lightheadedness about 30-40% seconds after drinking it, but that feeling only lasts for a few minutes before I go back to my Potty lightheadedness. I don't really know what to make of that, can anyone suggest something to make the effect last longer?

4.) I ordered 30-40 mm hg compression stockings and I plan on combining this with an abdominal girder, has anyone been significantly improved from this combination of clothing?

5.) Has anyone suffered from the chronic lightheadedness and found relief from it? If so what did you do and how much did it help?

Thank you for taking the time to read my questions and I appreciate any information you might have. I'm really in the dark as to what my prognosis is and how I can get better. But I appreciate this forum very much, you all seem very nice and supportive and I hope that as I learn more I'll also be able to contribute in the future.

As always, be well and get better!