yogini

On 7/30/2019 at 6:45 PM, RichGotsPots said:

Unfortunately and pet peeve of mine, are these “principles” taken as matter-of-facts in Dysautonomia without any studies to prove them.  Just tilt your bed upright, I mean come on, I don’t know anyone who that ever helped and if it did then we do not know if it is placebo of it did anything to Renin Aldosterone ratios, as far as I am aware. And what % of  Dysautonomias people have have abnormal levels. Mine have always been normal over the years. If normal we do not know if it is at all advisable to do that. But still like gospel that is repeated to ever patient. Smh

 

It's been studied.  See for example here:

https://www.ncbi.nlm.nih.gov/pubmed/19015909

On 8/1/2019 at 12:15 AM, Scout said:

I saw my cardiologist today and he suggested I try Florinef. He said either that, or Verapamil, but I can't do both, he said. 

I'm seeing my autonomic specialist in 6 weeks (wish it were sooner), so he said he understands if I want to wait until then and chat to her, and then see what we do.

My concern with the Florinef is, I get BP surges and I don't know if that will make it worse. Sure, my BP is generally quite low on average, but I still get hypertensive surges which are often severe.

Anyone with Hyper-POTS who has also been on Florinef? Experiences? 

Many thanks folks! x

 

 

You are correct in questioning whether florinef makes sense for you.  It is not an easy drug to go on or go off.  6 weeks seems like a long time, but it might make sense to just wait.  Personally if I had high BP and I were just starting my journey, it wouldn't be the first drug I'd want to try.

46 minutes ago, Pistol said:

@dancer65 - I have seen great effects from bracelets. Here in the US they sell them in retail pharmacies or Walmart, they are treated with citronella oil and you wear them and they really worked for me. I am a delicacy for bugs - they really like my blood. and I too break out really bad from the bites, so I know what it is like. These bracelets have helped and are cheap. I think you can get them on amazon. Another thing that helps - we light incense sticks when we are outside. Especially frankincense keeps the bugs away but in your case it might cause breathing problems. 

Thank you!  I have been looking for something which isn't an aerosol and which isn't heavy to carry around 

8 hours ago, RichGotsPots said:

I still don’t understand why you think he didn’t invent the surgery? Just because you don’t believe him? Do you believe he had the surgery? Do you believe he has Bilateral Adrenal Medullary Hyperplasia? There are articles about his story that go back to 2010 where he is still homebound and he is trying to convince surgeons to do a surgery for it. 

Um, the only person saying that he invented the surgery is him. You’d think they’d have at least quoted his doctor if it were true, and that it would be written up in all kinds of medical articles . Don’t think I questioned his illness or recovery in any of my posts above, so not sure why you’d ask that. 🙄

1 hour ago, RichGotsPots said:

But he did invent the surgery lol you think he didn’t? That part is not exaggerated. Can you show where they were doing it before him? I know what he has and that caused his dysautonomia. So yes he needed that surgery that he invented he did not just navigate through the system it’s a lot more than that. 

 And you believe the used car salesman when he's the one that says he invited a surgery, lol????  Let's agree to disagree.

16 minutes ago, RichGotsPots said:

He should reword the part about inventing a category but he is telling it from his point of view at the time he gave the presentation in front of the Autonomic science community.  At that time he did not know better. He knows now. But maybe he lest it in for some hyperbole. I think it’s fine. The part about him inventing the surgery is kind of true and amazing. I doubt you know someone who knew they needed a surgery that did not exist for humans and they figured out how to get one in America no less. I do see what you are saying because it comes off a little like bragging but I just think he is trying to motivate people and again I’m fine with that.  He didn’t just figure out he had Diabetes and start taking insulin and get better. Or try a traditional POTS meds like Midodrine, florinef and a beta blocker and was cured. It took him 7 more year to be cured after he knew what he had.

He has a rare adrenal condition called bilateral adrenal medullary hyperplasia so the POTS treatments would not work.  I'm guessing he is trying to promote his business and career as a motivational speaker through the hyperbole.  It is a lot more interesting to hear a speaker who "invented a surgery" than one who simply navigated his way through the system to improve from a rare illness. 

5 hours ago, RichGotsPots said:

In the articles about him and the Ted Talk he does not give the whole story, probably for saving time but if you search for him Youtube and google you can find out more details. I will try my best to fill in some blanks. For 4 years doctors did not diagnose him with dysautonomia and he had no computer only old medical textbooks from before he dropped out of a biology university program. He had one on Endocrinology and he read about the Autonomic nervous system and put it together himself that he had it. In the talk if kind of makes it sound like he discovered a new illness but in fact he just discovered he had Dysautonomia. He then got tested properly by Dr. Coghlan. Also before being tested properly while at a hospital stay they mentioned his adrenal dysfunction but gave him mixed messages about that. But he kind of focused on that. After Dr. Copland gave him a proper tilt table test with Catecholamines he discovered his Adrenaline was too high and his Noredrenaline was too low. The talk kind of makes it seem like he figured this out but it was mainly do to Dr. Coghlan. Next Dr. Coghlan tested for an Adrenal tumor and that came back negative so they were stumped by he was making so much adrenaline. So then after about a year they found a test (i’m Guessing a PET scan) that could look deeper into the adrenals an they found he had a lump inside the medulla of the Adrenal gland which was extremely rare. Dr. Coghlan eventually narrowed the diagnosis down. The problem at that point was there was no cure or surgery. This is where Doug was really his own hero. He research to prove there was surgery to remove the medula safely without damaging the rest of the gland.  Once he found Veterinary surgeries from decades ago and then convinced human surgeons to try it on him one at a time. He went from being bed bound to walking a mile after a few months but I think he was on a ton of medications too at the time. Then it took him awhile to do the 2nd gland and that recovery was worse, but eventually he could travel and walk and stand and got much better. I do not think he is 100% but way better. 

 

So it is accurate but does not give all all the details.

 

I agree he was his own hero,  and it is always inspirational to hear about anyone's recovery.  But I've read dozens of stories about people recovering from dysautonomia over the years -   all of whom were their own heroes, came up with their own treatments and went through  incredible struggles - but have never seen a story presented in this in this tone.  "I discovered a category of illnesses", "I invented a surgery", etc.  I found it a bit off-putting and strange.

1 hour ago, toomanyproblems said:

They don't get into enough of the medical details in the article to know exactly what his problems were. He did keep the functioning part of his adrenal glands. But those parts aren't functioning in mine anyway. 

Article says he has bilateral adrenal medullary hyperplasia.

 If your symptoms sound similar to the person in the article, it might make sense to look into this condition (or related conditions).  But even he kept his adrenals.

As Lindsay delved into more medical literature, he found only 32 recorded cases of bilateral adrenal medullary hyperplasia.

15 hours ago, KiminOrlando said:

Yeah, someone just called me and told me they saw a cure for me on CNN. Lovely. 

15 hours ago, KiminOrlando said:

Yeah, someone just called me and told me they saw a cure for me on CNN. Lovely. 

Yes, infuriating.  

10 hours ago, toomanyproblems said:

Because I have primary Addison's and hyperPOTS I have long fantasized about having my adrenal glands removed. They aren't producing any natural steroid anyway but my endocrinologist says for some reason they can almost always produce adrenaline. They aren't doing anything useful for me. Only bad. But no one would do the surgery I'm guessing. 

You should contact Doug Lindsey and see if he can connect you with his doctors. He says he's dedicated to helping other patients.  I'm not sure removing the adrenal glands make sense - but perhaps there is a way to slow them down that your doctor isn't aware of.

22 hours ago, bombsh3ll said:

I have heard of noradrenaline infusions being used before on people with severe orthostatic hypotension. 

This is certainly interesting and I am glad he has put his story out there. Of course, this will not be the answer for most, and I am not sure if this was the case back then, or if he just didn't have access to testing, but now blood and urine catecholamines can easily detect AMH, even where adrenal scans are normal. 

Additionally, rather than searching for someone willing to perform the first human medullectomy, he could have just had bilateral adrenalectomies and taken steroid replacement, it would surely have been more straightforward, but then again he may have preferred to keep his adrenal cortices to avoid lifelong dependency on steroid tablets. 

However, to me the most important message from this story is to never give up looking for an underlying cause & treatment. 

B xxx

He got dysautonomia a few years before me.  At the time of my diagnosis, there was already this forum and a few other forums that have been around for years.   Dysautonomia as a condition has been around for quite a while.  I could believe that he didn't get the right medial advice, but as soon as he made the connection to autonomic disorders, his story gets strange -- watch his Ted Talk.   We all have to take control of our healthcare and guide our doctors, but none of us have discovered this condition ourselves or a cure.

I am not sure what to think about this article.  Glad the patient is better and helping people but doesn't sound totally medically accurate. 

https://www.cnn.com/2019/07/27/health/doug-lindsay-invented-surgery-trnd/index.html

1 hour ago, whoami said:

I just played badminton with my father and i completely crashed. Im fatigued, short of breath, nauseated.

 

You mention getting checked for other things but, ive been checked extensively for heart related issues and nothing came of it. Echocardiogram, holter, you name it.

 

I get symptoms mostly when bending and standing, and upon standing.

 

Right now the shortness of breath has subsided but im not feeling so well. Ive been to the er countless time but they never found anything heart related either.

 

I dont know what to do

Most of us with dysautonomia when symptomatic spend all day in bed or on he couch.  Badminton wouldn't be an option - we are lucky to make it out of bed to go to the bathroom without feeling ill. What you are describing sounds quite different, so you may want to consider other causes in addition to dysautnomia.  I hope you are able to find a doctor to bring you to a diagnosis. Hang in there and hope you feel better soon.    

1 hour ago, whoami said:

Thank you very much yogini. I really appreciate it.

Unfortunately this morning its quite rough in terms of symptoms. Im dizzy when standing and i get out of breath when taking walks.

Yet, when i took my blood pressure standing (with my arm at the heart level) it was fine (130/79). Same thing sitting.

 

Not sure what to do with this. Im still lightheaded all the time and tired.

 

Anyway, thanks again . It means a lot

 

If you have fatigue and dizziness without HR and BP issues or orthostasis (increased symptoms when standing), it might make sense to look into causes other than dysautonomia. 

On 7/13/2019 at 8:08 AM, whoami said:

I cried a bunch this morning. Now when im standing im around 90-95 bpm. 75-80 laying or sitting.

 

Fortunately, i dont have symptoms once im standing.

 

My doctor prescribed a new antidepressant so im in the process of switching to that one. Its a bit hard. Im shaking so much at moment

 

Im so thankful this forum exists

Your heart rate seems totally normal (in the normal range, not indicative of POTS no symptoms when standing).  Checking it might be making you worry needlessly.  Changing antidepressants is rough on the body, so that also might be factoring into it.  Hope you feel better soon.

8 hours ago, whoami said:

What other form of dysautonomia for example? OI?

Orthostatic hypotension if there is a sustained decrease in blood pressure when standing.

7 minutes ago, Pistol said:

@yogini - yes, I do the leaning-against-the-wall exercise when I need to prepare for any upright situation. I used to get PT for orthostatic exercises - they could not get me above 2 minutes standing while holding on to something without becoming severely symptomatic. Even after 6 weeks of in-home targeted exercise. But - I no longer take seizures or have syncope, my BP is controlled and I am able to do the rowing machine - all thanks to meds and IV fluids. 

The exercise definitely has helped my insomnia and appetite, as well as cognitive issues. I think it is b/c of the improved circulation. Plus - I feel proud of myself afterwards!!!! 

That's awesome.  If you keep doing it I am sure you will continue to improve.   maybe if you add in the lean against the wall exercise regularly and try to increase it-even by 30 second increments - you might be able to improve your tolerance to being upright over time.

4 hours ago, Pistol said:

 

@yogini - I used to do different exercises for each group of muscles and would do lying down exercises when I was bad. That took a lot of time and often I skipped them. The rowing machine seems perfect for me b/c I can do all muscles at the same time. It really gets my HR up ( in a good way ) and I already am getting less short-of-breath. I have not seen a difference in orthostatic intolerance - still not able to walk or stand for any significant time at all. But my exercise tolerance definitely has improved since doing the rowing. 

How long have you been doing it for?  And are any of your other symptoms better - like sleep, etc.?  Have you tried the leaning against the wall exercise?

Electrical signals can interfere with the measurement so sometimes there are blips.  Or maybe you sat down for a sec?  Do you remember what you were doing?

I will add that in retrospect I wish I had never done cardio.  It's just not well-suited for my body. Other people have a lot of success with it.  Try a few things and find what works.

Not sure how bad things are for you and I had a sudden onset and I couldn't walk around the block when I first got POTS.  Though I didn't faint I just got extremely out of breath.   I would literally practice standing, doing the leaning against the wall exercise.  I got a stretching video and did exercises on the floor.  I would be winded after doing 5 minutes.  I also practiced walking up and down the hallway of my apartment building.  Gradually the stretching got easier and I could make it through a 30 minute video.  Then I switched to swimming, bike, same thing - 5 minutes at a time.  I used to have to sleep through the whole weekend to recover.

My advice is go slow.  Meet your body where it is and hopefully over time you'll feel better.  Now I'm not on any meds and can do advanced yoga.

15 hours ago, whoami said:

Thank you for your concerns yogini You're right, but my temp is now fine. I took it this morning and it was also fine for a sleep temperature

Right now im having insomnia. When om falling asleep it feels like im losing consciousness and gaaping for air. My anxiety is through the rough. Both my oxygen heart and bp seems fine... I have nausea also.

 

Im so tired but cant get to sleep. Aaaaaaaaa this is so annoying

 

Have you had a sleep study?   Maybe you have sleep apnea?

3 hours ago, whoami said:

@MomtoGiuliana

Does my HR change from sitting to standing => Yes, but not a huge increase compared to other members here. 10-20 beats at most, does not increase indefinitely and i can walk fine. My symptoms are not really worse on standing, i'd say. I do get an increase in adrelanine standing though, but this has changed a lot since i take an SSRI

Have you had a tilt table test => No, because i need a neurologist for that or a cardiologue, and for that i need a reference from my GP. And my GP have said that there's no problem, therefore no need for tests.

Can you have your general practitioner check your hr and bp sitting and standing, at least? => Well, i did tell them what it does when standing, but both the increase and adrenaline shots seems to fall in the "i am just anxious" or "that's just the way it is for me".

Right now, what scares me the most is my temperature. I'm at work atm and i'm just shivering. Feeling unwell... but generally "ok". I can function.

Sorry you are having such a hard time getting a diagnosis.  I've been told by my doctor (and have generally read) that a HR of 60-100 bpm is normal.  It is a healthy response to have an increase from sitting to standing of 15-20bpm.  So the heart rate you're describing may not be related to what's causing you to feel ill right now.  The low temperature does sound concerning and I think a doctor would have to take you seriously..  Maybe if you make an appointment and just bring that up, that would push the envelope?  Also, if your doctor isn't helpful maybe there is another one in your area you could switch to?

Some of the services charge, others don't (or have a sliding scale based on how much you order).  The one service I like emails coupons for free delivery.