thegron

Hey,

How does one go about checking if they have a mitochondrial disease? Which specialist did you see and which tests did you run?

Any information that you guys can provide is much appreciated.

-Thegron

I have heard anecdotal reports that some people experience a higher BP/HR soon after stopping Florinef suddenly. If I am correct, it should go back to baseline soon.

This is the way most of our neurotransmitters act. They are found in small concentrations (relative to the periphery) in the CNS but have several other functions outside of the brain. Cool stuff right?

It is true that Florinef has a fairly long biological half-life but I think the OP wanted to be completely off of it for the test.

I will just say that I would not advise stopping your Florinef suddenly unless instructed to do so.

Hope the PVCs and agitation improve!

I doubt it would help but what do I know lol. Be careful though because the diet can be dangerous long-term if you do not do it correctly. For the short-term, you may want to make sure you get enough potassium in your diet while you are transitioning. Avocados, salmon, and spinach are all low carb foods that contain a lot of potassium.

Anyway, I wouldn't recommend the diet unless you are monitored by a physician (who knows what they are doing). Also, the transition will be **** and it will probably take more than three weeks to even become adapted to the diet.

Good luck.

You can definitely gain weight on a gluten-free diet. You can gain weight on any diet because in the end, it all comes down to your caloric intake. It is probably easier to lose weight on a GF diet though.

Good luck!

Verapamil essentially slows down your heart, thus preventing it from keeping up with the demands of rigorous exercise. During exercise, your heart rate needs to rise. Verapamil is preventing that rise in heart rate and therefore, you tire more easily during exercise.

I recommend speaking more about this with your health care provider. The explanation above was for purely educational purposes

In normal individuals (who don't have POTS), blood is not actually shunted away from the brain to the gut. There is increased flow to the gut but blood flow to the brain is maintained.

You get sleepy after a big meal due to increased and decreased amounts of different hormones, mostly mediated by the parasympathetic division of the autonomic nervous system.

I'm actually fairly certain that all of this holds true in POTS patients as well. But if you have excessive blood pooling in your gut, it could make your orthostatic symptoms worse.

Just one man's opinion

Sugar (carbs in general) have been shown to decrease baroreceptor sensitivity. This would explain a worsening of our symptoms.

If you are going to eat any carbs, I would strongly suggest first eating a good portion of protein/fat.

Be careful with the midodrine. Make sure to monitor your BP occasionally while on the drug, especially whilst lying down.

It should not cause those effects. But that doesn't mean it isn't.

Spironolactone is indeed an antiandrogenic compound however, eplerenone (in the same class of drugs) has far fewer antiandrogenic effects and is still quite effective.

Hey just wanted to clear up a couple of things.

1. Micardis is Telmisartan.

2. ARBs actually decrease renal blood flow.

3. Bellgirl, I'm very glad you did not have a massive CVA!

4. Loot is correct in that the newer ARBs are generally better drugs overall. However, many clinicians still use Losartan because it is an older ARB which has a ton of data to support its use.

I wouldn't think it would have any effect on your POTS. But I'm not sure.

You all have made good points. I think you're all in agreement but don't realize it.

POTS itself is a syndrome, not a disease. So by definition it cannot technically have a "primary" cause. It is just a collection of symptoms that can be caused by various diseases/disorders. We have the terms "primary" and "secondary" POTS for one reason. We have found that a number of KNOWN diseases can cause POTS (like EDS and CFS) and therefore we call that "secondary" POTS. "Primary" POTS is just caused by some disease or diseases (probably autoimmune in nature) that we don't know much about. It is sort of like how we use the term "idiopathic" when we don't know what the heck the cause is. Idiopathic means "without cause" but really there is a cause, we just don't know it yet. So there ya go.

Loot,

That's actually a good idea. How accurate do you think those devices are though?

As far as the confusion is concerned... whether I have some dysautonomic symptoms or not is not in debate. It is more trying to find out if it is primary or secondary (caused by some other disease). And I'm actually most interested in seeing if I can pinpoint the cause of the bad brain fog that I have. I can put up with the other symptoms because they're relatively mild. It is just this **** brain fog...

Alex,

I've seen Dr. Tullo in NJ but he did not seem to believe that I was sick because when he sat me up, my BP was regular. As I mentioned earlier, I also have white-coat hypertension. But you're right, a TTT would be a better choice. I will def get one done in the near future.

Yeah that is why I'm trying to eliminate other possibilities. Because my symptom presentation is a little bit unique and I want to cover all of my bases. A diagnosis of exclusion!

Yep I'll see the ENT and I'll keep you updated if there are any findings.

P.S. I'm not sure if I've mentioned this but when this whole thing started suddenly one night after dinner... it didn't start with orthostatic symptoms or brain fog. It started with a thunderclap headache that lasted for three days! Then it died down to a milder headache that lasted for a month or two. The orthostatic symptoms/brain fog started after the really bad headache died down a bit. Makes me think of a cerebral vasospasm...

Thanks!

I've never checked my BP when my hearing diminishes. I recover from it within 10 seconds usually so it is hard to get a reading fast enough. But yes I've considered that that could be the cause. But the question is, why does it happen when I'm laying down or sitting and have no other orthostatic symptoms?

I know my regular sitting BP is around 115/75.

Thanks Alex. Yes I'm familiar with the doppler studies and may do one. I've never had a TTT actually. I am convinced I have white-coat hypertension because I rarely have bad orthostatic symptoms at the doctor's office but they are bad when I leave...

So my cognitive symptoms are actually constant. It doesn't matter what I'm doing or anything. Sure, when I stand up suddenly and get that wonderful feeling of orthostasis, my cognition definitely worsens a bit but it is constant otherwise. That's why my condition is so strange. So it won't matter if I'm lying down or standing up for the scan.

You see, the thing is that my dysautonomic symptoms (the orthostatic hypo, etc.) aren't that severe compared with everyone on this forum. That's why I'm wondering if they are actually secondary to something else that's going on. My cognitive symptoms are BY FAR my worse symptoms. I could live with the orthostatic ones.

Is there anyone else here who has milder symptoms like me? I mean, besides having bad cognition, I am fairly functional. I can walk around as I please and do the things I need to do. I have tried exercising but I get headaches and feel like once again I'm losing my hearing.

Sue, would you mind posting a link to that thread? I can't seem to find it.

Hanice, no one on this forum ever has to apologize for having a bad memory hahaha!

Naomi, Thanks for the info. Yeah I'll let you know how it goes if it happens.

Sue, thanks i will definitely look at that post.

Akgirl, nice to know someone else experiences this.

Hey Naomi,

I guess it is more that I don't like saying that I have POTS because that doesn't help at all. POTS is just a syndrome but can be caused by so many different things. I want to find the cause!

I haven't gotten any official autonomic testing. I'm going off of my symptoms, which are pretty classic OH symptoms.

I'll post this study that may answer some of your questions: http://news.bbc.co.uk/2/hi/health/8268336.stm

Yeah I remember seeing your SPECT results and I agree that knowing that you have hypoperfusion doesn't really help that much. BUT I could reallllly use some objective findings. I find that physicians are rarely "on my side" because they don't have anything concrete to work with (besides my symptoms which I think are pretty concrete). Also, finding out whether or not the brain fog is caused by hypoperfusion would help point me in the right direction and provide some validation for me.

Thanks for your response. That is unfortunate that you couldn't get a good answer for why you have those symptoms.

I'm a pharmacy student training to become a clinical pharmacist (or I may go to medical school after).

Sorry, I thought most of you knew that.