Do people ever recover from orthostatic intolerance?

[Strawberry]

Do the meds and salt water drastically improve or let people recover? Or is it just a tiny help? I haven't seen anything yet that shows much more than a small improvement.

And this question is because last week Dr Kaufman had me run the poor mans tilt table. Failed it.... I surprised myself how poorly I did. Dr K has been on vacation, so I am not sure when I will hear from him and start medication.

Thank you in advance for any responses!

 

[Sushi]

Do the meds and salt water drastically improve or let people recover? Or is it just a tiny help?

I think this question is different from the question in the title. In my experience meds made a huge difference and electrolyte water made a modest difference. But neither cured the cause of the problem. Some do seem to get better and no longer needs aids such as meds but there doesn't seem to be any universal treatment. I think we do know though that the cause is upstream and thus the solution is upstream--even though it may vary from patient to patient.

 

[halcyon]

Those are symptomatic treatments and don't get at the cause, which is likely some form of neuropathy or brainstem/ganglionic damage in many ME patients. If the cause of the neuropathy turns out to be autoimmune, I'm guessing those cases could be cured (or at least vastly improved compared to the current off label sympomatic treatments) using things like IVIG or rituximab.

 

[caledonia]

If your orthostatic intolerance is pursuant to adrenal fatigue, then treatment for adrenal fatigue should be helpful.

Then it depends on what causes the adrenal fatigue as to what kind of treatment may work. If it's primary, then adrenal cortex extract and the like may be helpful.

Otherwise, things like replacing lost electrolytes (salt, magnesium and potassium) should help you feel better.

Secondary adrenal fatigue may be due to a signaling problem in the hypothalamus and pituitary due to low glutathione. Raising glutathione via methylation treatment and/or testing for and removing mercury may be helpful.

Here is a page with some self tests for adrenal fatigue and some symptoms:
http://www.stopthethyroidmadness.com/adrenal-info/

 

[alex3619]

OI is usually treatable to some extent.

Full recovery from OI is probably not a valid idea. I don't think it happens.

Remission from OI is not unknown though. Its better to talk of remission, which happens, rather than recovery, which is not clear ever happens. I guess you would call people in remission recovered if they lived the rest of their lives without incident, but for now we have no way of being sure.

The other thing that can happen, especially with good treatment, is that the severity of OI becomes very low. Its not gone, its just not so much of a problem.

I don't think we can be reliably talking of cure or recovery until we know what causes it and have a treatment biomarker to go with treatments.

 

[Marky90]

I expect OI-issues in ME to be related to some kind of autoimmunity screwing up e.g. circulation. Remove the cause, and you should be fine again.

 

[halcyon]

Full recovery from OI is probably not a valid idea. I don't think it happens.

It does happen but I'm guessing it's pretty rare due to lack of proper treatment in the early stages.

 

[Gingergrrl]

If the cause of the neuropathy turns out to be autoimmune, I'm guessing those cases could be cured (or at least vastly improved compared to the current off label sympomatic treatments) using things like IVIG or rituximab.

This is what I am hoping for in my case (not cured, just improved) but have no idea if it could really happen or just fantasy on my part. Right now my treatments are symptomatic with Atenolol, Midodrine, electrolytes, etc, but b/c every recent test points to autoimmune neuropathy, am hoping IVIG and RTX will get to the root problem if I am actually some how approved for these treatments.

 

[Strawberry]

There is no way I can respond to everyone right now, so sorry!

@caledonia I had my adrenals tested by an ND a few years ago, and he said they were fine. Dr K tested my cortisol, but I'm not sure about adrenals. My thyroid was suspected many MANY times over the years, and it has been checked over and over and passes with flying colors. Even Dr K said it was fine. So I am not sure if that website has to do with me? I will try to do some of the tests though.

To all:
Maybe it will help if I clarify a little. I MAY have ME/CFS, MAY have MCAS also, so maybe I never will feel better. I don't know. A year ago I had improved, even during an extremely stressful period (daughter leaving home and moving to Hawaii for school, brother passing away, etc) yet still was able to help my brother paint my house. I worked so hard I actually got the muscle pain from too much muscle use. The GOOD pain! The one we never get the luxury of experiencnig any more. Then moved in with the first "big move". I was feeling good, so decided to walk to the beach near me. Its near a 250 foot drop. The next day I couldn't walk downstairs to do laundry without having to sit on the couch from weakness, hard heart beat, and heavy breathing. The weekend after I finished moving out of my old house. The weekend after that I had to set up my daughters room so she had a place to sleep when she came home at midnight. I have never recovered from the crash. Salt/potassium water helped for a while, then stopped. Maybe I need to up the salt content?

All I do now is go to work. I can't clean, or cook.

Speaking of, time to leave work... I will try to respond to others tomorrow.

 

[Gingergrrl]

Maybe it will help if I clarify a little. I MAY have ME/CFS, MAY have MCAS also, so maybe I never will feel better. I don't know.

I totally understand and after three years I am still only 50/50 if I actually have ME/CFS although I am 100% certain as are my doctors that I have MCAS. Regardless of the label, I believe there are things that can improve our suffering and make our lives better. Both palliative treatments and ideally things further "upstream" as Sushi often says, that get to the real source of the problem.

And don't worry about responding, I am really far behind too, but have related a lot to many of your recent posts and our paths keep crossing!

yet still was able to help my brother paint my house.

Am very curious, aside from the exertion issue, were you actually able to tolerate the smell of the paint itself?!!! We went back to my apt today after two more ozone treatments and the paint smell has not dissipated for me even 1% from when it was completed back in May and thank God we will be moving in 2-3 weeks. For whatever reason, paint and VOC's are literally intolerable to me. I know you cannot tolerate the fumes in your car and other strong odors and am fascinated that you can tolerate paint (unless you could back then but now you cannot?)

 

[Sushi]

Both palliative treatments and ideally things further "downstream" as Sushi often says, that get to the real source of the problem.

Upstream, actually.

were you actually able to tolerate the smell of the paint itself?!!!

When I painted a couple of rooms in a new house I used No VOC paint and neither I nor anyone else could smell a thing. (the person helping me paint was also a patient) I don't have MCS but I am ordinarily sensitive to things like paint odors. Here is the paint in case anyone is interested.

Natura® Zero-VOC and Zero Emissions Paint
Natura Waterborne Interior Paint continues Benjamin Moore's commitment to providing the most environmentally friendly paint. Natura goes beyond zero VOC* to offer zero emissions** and no harsh fumes***, making it a safer paint for your family and the environment, all without compromise to performance or color selection. Natura is truly "Green Without Compromise®."

 

[Gingergrrl]

Upstream, actually.

Oops, sorry I confused the two terms. I will fix my quote to say upstream!

 

[taniaaust1]

OI is very common in mast cell issues too.

Treatment of OI can vastly improve some people. Things like florinef can make a big difference to some. We are all different though.

My OI and POTS is helped heaps by saline IVs whenever i get one.

 

[Living Dead]

Do the meds and salt water drastically improve or let people recover?

Yes, it's possible to drastically improve. Obviously it depends on finding the cause, and then getting the correct treatment.

An italian doctor who got CFS treated himself with daily licorice powder in milk (an electrolyte solution), and this supposedly kept him healthy for the rest of his life. He thought that an infection had destroyed some of his receptors in the brain that regulated blood pressure.

 

[xrunner]

Do the meds and salt water drastically improve or let people recover?

Mine gradually reduced during treatment for Lyme then it went away completely and haven't had that symptom for three years. I still have a lower than avg blood pressure but it doesn't fluctuate any longer bw sitting and standing. Before that there was nothing that really helped, only minor temporary relief from salts, licorice tea and ribose.

 

[CBS]

OI is usually treatable to some extent.

Full recovery from OI is probably not a valid idea. I don't think it happens.

...

Drawing only on my own experience, the answer for me is definitely yes.

I have completely resolved all OI symptoms with appropriate treatment. The key variable is the cause of a person's OI. In 2009, after 15 years with "ME" associated OI, I was finally diagnosed with central diabetes insipidus (CDI). Treatment (desmopressin and fluids) led to swift resolution of all OI symptoms (30 minutes). It took three plus months me and my endocrinologist to correctly adjust my dose and for me to recognize the signs that I needed more or that I needed to drink additional fluids.

For me, OI is completely under control and a non-issue in any way shape or form with appropriate treatment, however, it is has not been cured. It should be noted that desmopressin is a powerful medication (anything that can dramatically impact fluid loss or retention has potential to do great harm). Most primary care docs won't go anywhere near it, and with good reason. Most endocrinologists don't know enough about it to properly test for CDI or properly titrate treatment. And lastly, most ME patients can get by (not thrive) on additional fluids and electrolytes (water is always the front line treatment, even for patients with severe CDI).

I'm not posting this as an endorsement that everyone goes out and tries to get an Rx for desmopressin. Most docs won't even consider it and those that would do so without extensive testing don't know enough to be prescribing it in the first place. My primary reason for posting is to address the original question, do patients recover from OI? And again, the answer for me was not recovery but extremely effective treatment.

 

[Sasha]

I had a long period (years) of remission of my ME during which all my symptoms, including OI, went away. I'd been 95% bedbound for years.

So I'd say, yes, you can recover from OI, if the underlying cause goes into remission.

 

[PatJ]

An italian doctor who got CFS treated himself with daily licorice powder in milk (an electrolyte solution), and this supposedly kept him healthy for the rest of his life. He thought that an infection had destroyed some of his receptors in the brain that regulated blood pressure.

Here is more information:
Discussion with Dr. Baschetti from 1996. He has good reasons for using milk.
Alternative recommendations based on Dr. Baschetti's approach.

 

[Groggy Doggy]

Yes, its possible because I no longer have it.

 

[Navid]

Drawing only on my own experience, the answer for me is definitely yes.

I have completely resolved all OI symptoms with appropriate treatment. The key variable is the cause of a person's OI. In 2009, after 15 years with "ME" associated OI, I was finally diagnosed with central diabetes insipidus (CDI). Treatment (desmopressin and fluids) led to swift resolution of all OI symptoms (30 minutes). It took three plus months me and my endocrinologist to correctly adjust my dose and for me to recognize the signs that I needed more or that I needed to drink additional fluids.


For me, OI is completely under control and a non-issue in any way shape or form with appropriate treatment, however, it is has not been cured. It should be noted that desmopressin is a powerful medication (anything that can dramatically impact fluid loss or retention has potential to do great harm). Most primary care docs won't go anywhere near it, and with good reason. Most endocrinologists don't know enough about it to properly test for CDI or properly titrate treatment. And lastly, most ME patients can get by (not thrive) on additional fluids and electrolytes (water is always the front line treatment, even for patients with severe CDI).

I'm not posting this as an endorsement that everyone goes out and tries to get an Rx for desmopressin. Most docs won't even consider it and those that would do so without extensive testing don't know enough to be prescribing it in the first place. My primary reason for posting is to address the original question, do patients recover from OI? And again, the answer for me was not recovery but extremely effective treatment.

CBS: If you're still out there please write me. Need to ask you a question.

Navid : )

@CBS