McBlonde

Oh no!! That feels terrible! I hope the Restasis helps!

Yep.... My D3 is low. Most people with any endocrine issue also have low Vitamin D3.... I've been taking it for over 5 years. I guess I can rule out a 1-a hydroxylation defect! It's good to know that simply taking Vit D3 could cure POTS for some people. Thanks for the info, Naomi!

The way I read it ... A 1-a hydroxylation defect can be a root cause of POTS and if it is, it can be successfully treated by taking Vitamin D3....

Maybe it's me. Maybe I need to take a break from the forum, but this multiple threads being started with "Just get up and exercise and you, too, will be Cured!" implied are really getting to me.

McBlonde, thanks so much! Do you have high blood pressures at times?

Yep....episodes of high BP, normal blood pressure and some times low BP. Crazy isn't it?

Being 25 y/o and having a dx of "simple POTS" is one thing, but characterizing all of us as needing to get up and exercise to cure ourselves is insulting. Maybe that's not how it was intended, but that's how it makes me feel when I read threads like this. I have more medical experience that you are old.... If I could have exercised or pushed my way through this life altering disease, I would have been cured 12 years ago.

Bren..."hard to believe this is what we are getting from top specialists at some of the best hospitals....talk about ignorance"

EXACTLY! I so agree with what everyone has said.

I think it goes back, also, to using the word POTS to describe all the variations of autonomic disorders. How you treat simple POTS and the expected outcome is one thing.. They should have stuck with that & named the other autonomic variations other names. All that article does is make us look like lazy people that would get well if only we would get off the couch and exercise and coming from Mayo no less!!

I haven't gotten it filled yet, but my POTS doctor just prescribed Wellbutrin. Also, I just read an article by Dr. Grubb where he has Wellbutrin or Cymbalta or Lexapro listed in his protocol algorithm for Hyperadrenergic POTS medication protocol. Here is the link http://circ.ahajournals.org/content/117/21/2814/T2.expansion.html.

"People with hyper pots will have abnormally increased norepinephrine levels, and such is not present in neuropathic/partial dysautonomic pots. Even though the "high" rate for diagnostic purposes changes"

For my clarifications.... people dx'd with Neuropathic/partial dysautonomic POTS do NOT have abnormally high levels of norepinephrine?

Now that you say that, it reminds me of someone here on the board that took their child to Mayo in MN, spent a week and oodles of $$ only to come home with the "salt, fluid & exercise". ( but of course I can remember who or when it was posted)

AdjustingMySails.... THAT is an excellent explanation. No wonder all the doctors are so confused about "POTS". Whoever decided to lump these different manifestations of an autonomic disorder and call it "POTS" did a great disservice to both medical community and patients.

That's great Lemons! Did you have "regular POTS" ( high HR on standing with no BP issues?)

Last August, I had a root canal and that sent me into such a bad crash that I couldn't get up until February. However, starting slowing in February, by May I was walking 30 minutes a day. (until I did it outside in the 100 degree weather and crashed again) I had to start over and I'm up to 15 minutes (indoors this time, though)

I called for my appointment in May and 1st available was July.... My appointment was at 1:00 and I didn't get through until 5:00 He's been swamped with new patients since the video hit youtube. He was like "I don't know how I ended up on that youtube" lol... so funny. He sees patients M - Th and has to reschedule when he feels bad. Basically, I'm guessing it would be hard to get in because of the waiting list unless there was an unusual cancellation. Hey, I hate what the tourists have done to Destin. I remember in college when the stores were boarded up in the winter!! Sadly, the quiet little fishing village got taken over by developers and it takes an hour to go a mile down the road. Most beautiful beaches in the US, though and my body loves that salty air!

Issie, I'll answer you on the Dr. Thompson thread!

Ok Thank you! That time frame isn't long at all. If all he does is a poor mans tilt, how does he determine what your treatment looks like? Just based off of symptoms?

He also requests you bring a copy of your TT test with you. He was an internal medicine physician trained at University of Alabama when he got POTS. He's been practicing with it 15 years (I think).... He's had so many of the same struggles we have tinkering with meds to try to get symptoms under control. You and I both do better with the Destin cure! I feel so much better there. If I could move there tomorrow, I would.

Goodness!! I know exactly what you mean... Sometimes I wonder what I did "wrong" to have her only want to talk to me, but I don't know. I think it's also a little something to do with this current generation who seem to tell us a whole lot more than we ever talked to our parents. (This is an observation even in perfectly health moms and daughters our age) So, it's probably a whole lot of circumstances that have gotten y'all to this point. I can already hear Dr. Randy in my head though.... of what this pattern will eventually do to YOU. He's great. He will deal with the depression, too. Have y'all seen him before?

Wow, Bren... so sorry to hear that!! I can totally relate in this way. My daughter is your daughter's age. She has her own health issues (but not an autonomic disorder thank goodness!)..... Anyway, I am her "go to person" also... I am the one she wants to express herself with. I am the one that she wants to be able to dump all her sadness and feelings on.... She doesn't want to talk to anyone else. She "wants her mom to listen." That was fine before I was so sick. I had the ability to handle it. I don't any more. My body over-responds (as usual) causing me to have a cascade of symptoms. This is the hardest thing, but for your own health, she needs to be dumping all this on a counselor who has the ability to help her. You're going to probably have to insist (I did) but the alternative was to keep spiraling downward myself. I am so sorry you are going through this!!

Edited to add.... Dr. Thompson will be the PERFECT person to talk to her about this, imo!!

This organization has the right idea at how it could work. If I remember right (that a 50/50 chance, lol) anyway, I think this non-profit was set up by a hedge fund guy who had made gazillions of dollars and had an incident in his life involving a child with a rare disease who had a mutation that was found and could be treated. So, the hedge fund guy set up this non-profit for children with rare diseases that need genome-wide sequencing, analysis and treatment.... The way the whole thing is organized is brilliant. If only we had something similar....... http://raregenomics.org/about.php

Isn't that crazy! And that was with all my Florinef, heavy salt loading, etc.... Didn't make any difference. I don't get that.

I was just researching how much it would cost to have genome sequencing with an analysis from a geneticist and read this... wow, 50 MILLION possible mutations?! I had no idea.

"With the dramatic reduction in direct genome-wide sequencing costs, it may make sense to perform such genetic analyses on rare diseases to build up databases on different mutations that might cause various pathologies. However, in the near future, this will most likely not be particularly helpful to those unfortunate individuals that are afflicted with these diseases. The real cost for disease diagnosis by gene-wide sequencing will really come from the labour involved in the analyses of the DNA sequence data, including sorting through some 50 million possible mutations and common genetic variations that will have nothing to do with the manifested disease in the patient. The frustration will come when it is realized that there still is not much that can be done for most of these rare diseases without further research and development into these illnesses."

Does anybody else do this? The last time I had to have a saline IV, I got 2 bags. I also had to go the the bathroom twice before the infusion was even complete.... I pee'd it out, before it was even through going in!

Sue... So, so happy that you found a good primary care doctor! That's no easy chore this days!! Hope you are feeling better today. Your post reminded me of something that I know, but forgot. In most cases (at least here) family practitioners see an average of 40 patients a day. An internist sees an average of 15 patients. It's something to think about when looking for a primary care physician.

Regarding white lesions on an MRI... here is a very interesting blog of a neurologist who explains the differential diagnoses of MRI white matter lesions.

http://braindiseases.wordpress.com/2008/05/15/mri-white-matter-lesions-does-it-represent-ms/

Also:

Why do we use lactated ringers? Because lactated ringers is most like normal extracellular fluid. If you must give a couple liters of normal saline to a burn patient, you will not harm them but remember that normal saline contains a large amount of chloride. If you give very much chloride to a burn patient there is a potential for metabolic acidosis. Fluid which contains dextrose is not used for two reasons:

• Does not contain any electrolytes,
  
• There is potentially a large amount of adrenaline in the bloodstream which makes these patients glucose intolerant. Their blood glucose levels will increase which will cause their urine output to increase, therefore they will not be getting resuscitated appropriately. http://uuhsc.utah.edu/burncenter/emergencycare/treatment.html
  

I also remember reading an article regarding albumin being added to the IV. I saved it somewhere, but so far, can't find what I did with it!

Here's a link that describes fluid replacement in an easy to understand article.

http://www.nursingcenter.com/prodev/ce_article.asp?tid=1157503