OI, Dysautonomia

[ahmo]

I've finally seen my GP about what seems to be worsening OI. For at least a year I predictably have an episode of low BP in the afternoon when I'm doing my minimal food prep. Light headed, pain in mid-back, often including sweats and chills, nausea. If I stop and lie down, it passes in a few minutes. It seemed to be less of a problem when I took my adrenal glandular at least half an hour before my activities.

In the past couple weeks, I've also had similar episodes during my morning food prep, and have felt my BP to be my most debilitating symptom. I copied bits from 2 documents , here and here, I found helpful, to take to GP.
I've also been having what I believe to be IBS-D for some months, and spent 3 months in eczema hell.

My previous GP hasn't been seeing patients, and I've now been w/ the current GP about a year. He was honest w/ me, that he doesn't have much experience in alternative or complementary medicine, and would speak to the former doc. However, just as when I saw him about 4 months ago, w/ what I finally realized was my first bout of eczema, he suggested that my T3 thyroid replacement might be the problem.

I'm willing to reduce the T3, even though I have no signs or symptoms of excess thyroid. However, I've also been losing weight. As he said, it's possible that w/ weight loss I might need less T3, and that this could contribute to both diahrrea and weight loss. (and low BP??) He took blood, and will contact me today or tomorrow. But he said it's also possible that I'd need to come into hospital for tests.

I can't think of anything that would be revealed by hospital testing, as we have so many dysautonomia symptoms as a cohort. Hospitalization is probably the thing that terrifies me more than anything, especially because I have such limited food choices, and rely on so many supps for daily functioning.

My acupuncturist, after I told her of my OI, did a treatment that had me feeling better the following day, but the benefits faded.

My question: Any experience with these issues that hospital testing might help reveal? My sense is that it'll only get me into a round of unhelpful medical suggestions or interventions.

Also underlying my condition is the death of my husband 2 years ago. The months of his illness and the subsequent demands, followed by the difficulties of emptying out the house in the first months of this year, have left my adrenals in very poor shape. This is what I feel is the basis of my problems.

Thanks very much for any advice or suggestions. cheers.

 

[Wolfcub]

I'm afraid I don't have any experience of OI (though standing too long absolutely does drain me), or of thyroid medication so I am pretty useless to you.
But I do send you my kindest thoughts. You have been through such a lot. I also nursed my husband through terminal cancer (prostate) but that was nigh on 20 years ago now.
Your loss is much more recent and raw, and I wish you well and send you my deepest condolences.

 

[taniaaust1]

Sounds like autonomic system issues which of cause includes the OI (and also can cause IBS). Maybe the dr wants to test you for your OI issues? at the hospital. Does that hospital have a tilt table? I suggest to find out what tests would get done if you were there before hand.

 

[Seven7]

My question: Any experience with these issues that hospital testing might help reveal? My sense is that it'll only get me into a round of unhelpful medical suggestions or interventions.

The symptoms you are discribing are called presyncope symptoms ( google it).
The test for OI is called tilt table test. This is good news in the way that is one thing we can treat that can make such a huge difference ( when treated properly)
The type of doctor that treat OI is an electrophisiologyst ( a type of cardiology). A lot of old plp get OI so ussually you can find a doctor at least within the Cardiologyst center!!! Best of luck!!!!
Ahhh three are tones of meds based on the type of OI you have

 

[ahmo]

@taniaaust1 Yes, I agree, it sounds like that to me, too. Doc said maybe another visit to cardiologist, who pronounced me fine about a year ago. So that should be where I can get a TT.

@Seven (formerly lnester7) "presyncope" Thank you!! And tons of meds possible...great news.

 

[JaimeS]

y question: Any experience with these issues that hospital testing might help reveal?

Tilt table test? You can do the NASA lean test if you can't do TTT. A poor man's TTT is just lying down in clinic for at least 10 minutes and measuring BP and HR. Then stand and measure HR and BP at 5 or 10 minute intervals awhile. Pls look up exact instructions. There are instructions for NASA lean online. Both of these can be done in a regular doctor's office if your doctor is game to try.

You can also get an "autonomic panel" and yes there are many things you can take that might help -- starting with stuff as simple as filling up 2-L of water, adding electrolytes, and making it disappear over the course of the day. It doesn't sound like much, but it really helps me.

There are specialized electrolytes and salts for people with POTS and OI too -- you can start w/some v. basic interventions.

Not a doctor, & not medical advice

 

[Sushi]

My question: Any experience with these issues that hospital testing might help reveal? My sense is that it'll only get me into a round of unhelpful medical suggestions or interventions.

I don't know of any tests that would have to be done while hospitalized but them I'm in the States and even surgeries are often done as an outpatient. A Tilt Table test is often done in a hospital (because the machines are expensive and rarely found in a doctor's office) but you don't have to be an inpatient.

You mentioned that your blood pressure is low--how is your pulse? I hope you have a good experience with whatever doctors you end up seeing. I also have OI and do see an electrophysiologist who is somewhat knowledgeable about it.

 

[kangaSue]

Sounds like it would be worth doing an autonomic function panel work-up and a major tertiary hopital is about the only place in Oz that you can get this done. Through Cardiology possibly if you have a suspected cardiac defect otherwise, it would be via the Neurology Dept.

From where you are on the North Coast, would you go to Sydney for this or come up to Brisbane?
If Brissie, Dr Robert Henderson at the RBWH has a reputation of being a knowledgable Neurologist where dysautonomia is concerned and, while I didn't see him personally, diagnosed me with Autonomic Neuropathy from the panel of Tilt Table Test, Valsalva Maneuver, Heart Rate Variability to Deep Breathing Test and QSART and Thermoregulatory Sweat Test. All the tests were done in a few hours as an outpatient appointment.

These dysautonomia things can have an autoimmune basis too, has your GP run an ANA panel as a matter of course, and GAD65 antibody blood tests for the thyroid issue? GAD65 antibody also pops up sometimes in those with GI dysmotility issues and that can involve having low bp, diarrhea and weight loss as well. I'd get them to also do an ENA panel to cover most of the more common autoimmune things, and where GI and/or dysautonomia issues are commonplace too.

 

[Crux]

ahmo, what a devastating ordeal to go through...the loss of a companion, plus ill health. I'm glad you've survived...

I'll throw out a guess about OI/ dysautonomia. I believe that brain iron dyshomeostasis may be part of the cause of this.
In studies of neurodegenerative diseases, increased iron deposition is found in the brain.

Increased brain iron is found in Parkinson's disease, along with dysautonomia.

Low Ceruloplasmin, a copper protein, is often found in neurodegenerative conditions, such as Parkinson's (PD). ( I bring up PD because it is the most studied.)

I haven't seen any studies that associate brain iron dyshomeostasis with ME/CFS, but a PD symptom is fatigue. ( same for MS.)

I have had many episodes of OI, and at first, high dose B12 stopped it. B12 among other things, can inhibit iron absorption. It stopped working when I lowered the dosage.

Anyway, a couple of years ago, the OI became severe again. The combination of a keto diet, and copper supplementation has stopped my OI. I'm not recommending either, just reporting.

I hope you find a way to heal this...

 

[PatJ]

I've found the following things to be helpful in partly managing my OI:
* Most important: Lie down for 90 minutes, then be upright for 30-45 minutes (my OI symptoms start at around 45 minutes), then lie down for another 90 minutes, repeat throughout the day.
* Lie down as soon as OI symptoms start. The longer I push the longer it takes to recover.
* Take garlic 2x/day to help bump up my BP a little
* Take cayenne 3x/day to help bump up my BP a little. I started with 1/16 teaspoon and now take 1/8 tsp.
* (Garlic and cayenne are both known to modulate BP - too high and it may come down, too low and it may come up.)
* Avoid too much omega3 (fish oil, flax oil and seed, etc.) because it's good at lowering BP. I can tolerate 1 tablespoon of flax per day, but 2 lowers my BP and increase my fatigue significantly.
* Drink at least 2L of water per day with a good electrolyte mix (I use Ultima Replenisher).

 

[ahmo]

@JaimeS Thanks very much for those instructions. It turns out there's not a TT at the cardio clinic nearby. And I won't be traveling to the nearest place, which is about 5 hour drive..

@kangaSue thanks so much. I definitely have autoimmune issues, most recently a first-ever terrible eczema outbreak. I agree it's at least as likely that the problems are neuro, as cardio. I just can't face the ordeal of travelling and testing. Frankly, once I told my acupuncturist about this problem, it's lessened. So maybe I have to just settle for acu, as I doubt I'd get an kind of rx without the testing.

@Sushi The last episode when I had to drop everything and lie down, BP was 116/71, P 96. So in the scheme of things, not tooo terrible. But, as with most of my complaints, the effects are real and debilitating, regardless of the objective measures. Last year, during the summer I experienced POTS-lite, as I called it. Not the 30-point spread from typical readings, but definitely higher heart rate.

@Crux Thanks for that. I might try some copper. I'm using high doses B12. And a keto diet, with 100gm meat most days.

@PatJ Thanks for this list. I haven't done electrolytes for awhile. I wish I could tolerate more salt, as this, itself, is recommended for low BP. But I don't. Really, I think my adrenals are as much the problem as anything else.
I also see in an MEA article by Charles Shepard, that Addison's disease overlaps w/ ME, so maybe GP can test for that. I take adrenal glandular.

I'll try garlic. I don't tolerate sulfur, or high thiols, but have been testing that in the past weeks. I'll try garlic, something I've missed for years. I'm drinking 2+ l daily. And I spend A Lot of my time lying down.

 

[Wayne]

Also underlying my condition is the death of my husband 2 years ago. ...... Thanks very much for any advice or suggestions. cheers.

Hi @ahmo,

I'm sorry to hear about the death of your husband. My sincerest condolences. -- Just thought I'd mention I just made a BRIEF POST on another thread which touched on my Dysautonomia/OI. Perhaps there's something in my story that may be worthwhile for you to consider. -- Best!

 

[JaimeS]

Thanks very much for those instructions. It turns out there's not a TT at the cardio clinic nearby. And I won't be traveling to the nearest place, which is about 5 hour drive..

A poor man's TTT is just lying down in clinic for at least 10 minutes and measuring BP and HR. Then stand and measure HR and BP at 5 or 10 minute intervals awhile. Pls look up exact instructions. There are instructions for NASA lean online. Both of these can be done in a regular doctor's office if your doctor is game to try.

You should not need to go anywhere special, just have a doc willing to do this. I know that in and of itself is sometimes a big ask.

Here are some really, really straightforward instructions you can print out for your clinician, written by our very own Dr David Bell: http://www.oiresource.com/oitest.htm

 

[wigglethemouse]

Here are some really, really straightforward instructions you can print out for your clinician, written by our very own Dr David Bell: http://www.oiresource.com/oitest.htm

The Bateman Horne Center also has an article, video, and detailed instructions as well.
Article: https://batemanhornecenter.org/assess-orthostatic-intolerance/
Video: https://batemanhornecenter.org/nasa-10-minute-lean-test-2/

 

[ahmo]

@JaimeS My doc and I agreed that testing wouldn't be of much use. I know I've got a problem, he agrees, and even labelled it POTS. I used to say I have POTS-lite, because there was less than a 30 pt. difference in HR. But when I told him of my BP/P in my most recent episode, and after lying for 10 minutes, he said POTS.

In the end, the main suggestion was compression stockings, which I hope arrive this week. It seems the acupuncture has maybe shifted something in the longer term, as I've not had an episode for a couple weeks. Also did some lab tests, and was called to set up an appointment. So I'll get more feedback in a couple weeks.

Meanwhile, I've tried licorice, ginger, garlic, all said to raise BP. Thanks for all suggestions.

 

[Wayne]

Meanwhile, I've tried licorice, ginger, garlic, all said to raise BP. Thanks for all suggestions.

Hi @ahmo

You may want to check out THIS POST I made on using DMSO to affect my own dysautonomia. --

 

[JaimeS]

I've tried licorice, ginger, garlic, all said to raise BP

Licorice, so long as one doesn't react to glucocorticoids...

 

[kangaSue]

Licorice, so long as one doesn't react to glucocorticoids...

Do you know what mechanism is involved with this?

All steroids crash my bp and energy levels rather than the opposite, even when topically applied, but everything tests o.k. for response to cortisol (morning cortisol is lowish normal) and no doctor has an explanation for my response to steroids.

 

[JaimeS]

Do you know what mechanism is involved with this?

All steroids crash my bp and energy levels rather than the opposite, even when topically applied, but everything tests o.k. for response to cortisol (morning cortisol is lowish normal) and no doctor has an explanation for my response to steroids.

Why yes.

Cortisol can be CNS-toxic, even as it's anti-inflammatory, peripherally. A significant number of pwME experience this, though not all of us. de Vega did a test that showed this in pwME's PBMCs (isolated from the patients, I believe) and there is a previous study showing the same pattern in GWI.

When you say "everything tests OK for response to cortisol" I'm not sure what you mean. An ACTH tolerance test?

 

[nandixon]

Do you know what mechanism is involved with this?

All steroids crash my bp and energy levels rather than the opposite, even when topically applied, but everything tests o.k. for response to cortisol (morning cortisol is lowish normal) and no doctor has an explanation for my response to steroids.

Perhaps the steroids (and licorice) are causing suppression of the HPA axis.