toddm1960

I see much better at night During the day I always wear sun glasses. It wasn't until my POTS diagnosis I found this out, but I've been this way my whole life.

Not too pushy at all, if I hadn't pushed like this I still wouldn't have a POTS or mitochondrial diagnosis. Most doctors don't look beyond their standard tests, if they don't want to talk about my ideas I fire them and look for someone who will.

Naomi is exactly right, this function is controled by our ANS. Check out YoutTube there's a bunch of crazy videos with over dilation or mixed up dilation. Just one more potsie thing.

I'm one that did test positive for mitochondrial disease, and you are correct it's not easy to find doctors knowledgeable enough about it. Just like getting doctors to look into autonomic issues, you have to do the same problem with finding someone to help diagnose mitochondrial dysfunctions. It took me 5 years and 30 doctors, don't give up. Again I looked up the closest MDA office to me, saw a geneticist first who agreed mitochondrial dysfunction can play a large roll in causing autonomic breakdowns. Then was forwarded to a mitochondrial specialist. The main problem is the cost and how invasive a muscle biopsy is, once there is a simple swap DNA test I think you'll see a huge increase in who's tested for this.

Until the BWG study is done it's way too soon to tell. No one has repeated the original Science papers process exactly yet, and the negitive studies have not been able to find it with their methods. If WPI can find the blinded samples alot of people will be eating crow. Rama where did you get that bio of Judy? That's the second time you've thrown it out there and it seems to be mostly urban legend. She worked 20 years at NCI, heavly into HIV she's been working on retroviruses since the mid 90's. Guess I'd just like to know where you got the information.

I had genetic testing for mitochondrial disease. I hope you get some answers that help.......

Julian Stewart is light years ahead of any other dysautonomia researcher, for new members that haven't visited his web site it's http://www.nymc.edu/fhp/centers/syncope/index.htm It will give you a little back ground information on LFP, and his other POTS divisions. I have been taking 3 grams of vitamin C for a long while I can't say it's changed my orthostatic hypertension, but I'm sure it's at least helping with the increased oxidative stress. Great post rama.

I'm orthostatic hypertensive and have found taking one small hit a day keeps my BP in check, I get a slight increase when I frist stand then that's it. I'm also taking 1000mg of niacin and 5mg of cialis, this seems to hold my BP stable though my HR still raises......one thing at a time I guess. I'm keeping a BP / HR log to build a case for my PCP to write a script for Marinol, we'll see how that goes. Once again we have to know what type of POTS we have and look for the drugs to lessem those symptoms.

I guess I missed when BP became criteria for a POTS diagnosis? If your HR increases by 30 beats per minute or increases over 120, this is POTS. If your BP drops this is NCS or PAF, you can have both, but POTS has nothing to do with BP and HR has nothing to do with a NCS or PAF diagnosis. I wonder why researchers are lumping BP into a POTS study? Why aren't they asking for patients with both POTS and NCS or PAF? Maybe I'm wrong has the criterion changed and hypotension is now part of POTS? Just a rant on my part, way too many doctors think if you don't pass out you can't have POTS. Now after looking at the study they are looking for just POTS patients, nothing else, no NCS or PAF.

Rach any change someone could upload it to YouTube? More exposure can never hurt, and it doesn't sound like they are still for sale so no one is out any money.

Cathy I'm so sorry to hear about your daughter, I really hope you can find something to help. I do know these "syndromes" are real, I'm more talking about some of the medical community out there that doubt we're really sick. I don't feel much different on the CoQ-10, not all do, but it does do two things 1) increases the amount of ATP we're producing 2) lessens the amount of free radicals from our broken OXPHOS process.

There is no cure but treatments will slow the progress, and lessen some of the pain. Also if you get to the point of not being able to work a mito diagnosis will get disability approval much faster. It's also confirmation of how you're feeling, like not being able to exercise and being told you're lazy or you don't want to get better. For me it's much better knowing what I have, and once testing is cheaper and less intrusive I think we'll find mito involed with many other diseases.

ram I know it's a big call and it comes from speaking with and emailing with mitochondrial doctors, my sister and her kids all have this also. The first symptom they look for in adult cases is dysautonmia, and depending on your level of dysfunction you're right it can be progressive. My current neuro at the MDA clinic continues to tell me, if you had to pick a neuromuscular disease to have.....this is it. The biggest draw of energy or ATP in our bodies comes from our brain and nervous systems. This ties into alot of Dr. Myhill's research also, her testing of our respirtory chain functions my turn out to be the cheapest way of finding breakdowns. Cathy I agree with you to a point, there isn't much they can do to help. But for me the diagnosis gave me a real disease, I no longer had just a syndrome, and it answered the pure exhuastion and weakness and cramping (on top of all of the POTS stuff) I was going through. Getting on disability with POTS is tough, once I had the mito diagnosis I was approved in 5 weeks. Now I'm fighting the insurance company to cover my CoQ-10, that is from Tishcon and runs around $200 per month. This is just the path that I dug out doing research and trying to solve what was wrong with me, it took 23 years to find and be diagnosed with POTS. Then only 10 months to be diagnosed with mitochondrial disease. All of it done with online research and requesting doctors to run tests, no doctors ordered a TTT or a muscle biopsy.

I agree with you Naomi, I needed to know what was causing all of this, and I didn't care if there was treatment or not. I started with a geneticist, they'll run all of the basic blood and urine tests looking for things like CPK, blood lactate, pyruvate, amino acids and enzymes. In my case the geneticist worked out of the MDA clinic in Rochester, NY and she felt very strongly about the dysautonomia mito link. She knew Dr. Shoffner who at the time was only one of two labs doing fresh tissue muscle biopsies. The fresh tissue testing allows them a look at how each complex is functioning. This is also the area Dr Fan Kendall is doing research on a DNA swab test to look at how the oxidative phosphorylation process is functioning (complex 1 - 5) Most new adult mito cases today are classified in how each complex is effected, and not in the older acronyms. So my best advise is to look up on MDA.org and find the closest MDA clinic to you. Make an appointment if you can and talk to them about what's going on for you, they'll know the next best steps. Just because my case turned out to be mito, not everyone will be the same, we're all so very different. Hope this helps and that you find your answers.

I don't want to highjack this thread but real fast I had metabolic testing, lumbar puncture (spinal tap), and fresh tissue muscle biopsy. My treatment plan was based on the results from those tests, and a year later I don't feel any different or any better. Naomi you're correct most of the information out there is for known mitochondrial variants, what's new in this testing is looking for breakdowns in the 4 complexs of the respiration chain or oxidative phosphorylation. UMDF.org or mitoaction.org have more on adult mito. I'll bet there are plenty of others on this board with mito diagnosis, PM if you would like other details.

The first thing I wanted to be checked for was a mitochondrial disorder, and it turned out to be my root cause. I think as testing gets easier and cheaper you'll see 99% of us have a mitochondrial break down as the root cause for our dysautonomia.

Do you mean supine or standing? I think there was a poll awhile ago asking if you had orthostatic hypotension or orthostatic hypertsion, I'm sure how to search on that one. Maybe someone could find that poll and bump it back up.

This is what gives doctors such problems diagnosing us, unless they're aware of dysautonomia. I had one doctor tell me "you can't possibly have all this going on at one time, you're making it up" Needless to say I fired him that day, but that's a whole other story....lol Hang in there, things do get better as you understand how your body reacts to things. When I lay down I have the opposite problem, I feel like my head is filling with blood, my sinus fill and I can't breath. Remember part of dysautonomia is vascular, we dilate or constrict at inappropriate times causing many of those problems. I hope things calm down for you and that you find somethings to help.

Mine is ultra low <.02, this sure sounds like a POTS thing. Half of will be super high, the other half super low. Geeze

Issy I agree we all experiment here and there, the first try I went with for over constriction is nacin. I've worked my way up to 1,000mg a day, I take it in the morning. I didn't know about taurine, but will look into that today. The other two things I've been looking at are marinol and the once a day cialis, both raise NO and dialate our blood vessels. Keep us updated on how your experiments are going.

Naomi the easy and fast answer to your question is if your BP drops when you stand odds are you're dialating. If your BP raises when you stand chances are you're constricting. Then there are two different things being talked about, first is total low blood volume and second is regional low blood volume due to pooling.

Naomi, Only half the people with POTS are hypotensive, there's a big group of us that over contrict. This is a good question for the doctors in the DINET newsletter, 1) Are most POTS patients hypovolemic 2) Does regional hypovolemia lead our bodies to react just as if we have total low blood volume.

I couldn't have said it any better...........and of course I didn't LOL Again it hits home to me because of my narrowing pluse pressure only when standing. I wonder are there many of us on here with narrowing pluse pressures?

Turmeric is a NO scavenger, my symptoms increased and I felt awful the whole two weeks I taking it. Within a week after stopping I was back to my normal crappy self

That's why crazy doctors like levine are so dangerous, they push their nutty ideas long enough and it gets into the main stream. Don't doubt for one second this guy is saying he can cure POTS and if you aren't better you're just to lazy. Just the fact that the doctors from Vandy didn't jump all over this guy is scary, very scary.