toomanyproblems

I know this is an old thread but I wanted to comment. I've been diagnosed with mild cognitive impairment. I'm 67 and have had POTS for at least 14 years. I suspect that this is vascular dementia caused by POTS. I'm looking into having it diagnosed properly so it can be treated/managed properly. It's a fairly rare form of dementia but it totally makes sense in a POTS patient. I'm currently on Namenda. 

Pepto for me.

8 hours ago, Birdlady said:

Oh my goodness. Thank you for posting this! 

I am having a terrible time with my glucose levels. Last year I bought a glucose meter and my fasting were in the 110's. I could not believe it. My entire life I had always been in the 70-80's fasting. I brought all of this to my doctors including a 200 reading after having potatoes. They both blew it off when I told them I was getting increasingly worried about it. They told me I'm too thin for that problem..../sigh!

I've completely changed my diet the past year, but still having a terrible time. Edit: My fasting is down to 95-100, but I saw a 150 two days ago after eating a small salty snack.

I thought the glucose issues were tied to my beta blocker as they can cause glucose issues too, but if it's just POTS, I would not be surprised at all. 

I'm not on a beta blocker FWIW. My fasting glucoses are high too, but that's probably because they aren't really fasting. My stomach empties too slowly. Other lab values are also indicate that fasting times for me are not fasting times for normal people. I also see values around 200 after a carb heavy meal. That is just not normal. Renal threshold is different in different people but you would probably start spilling glucose in your urine when it gets over around 140. And that is definitely not normal.

This  research is so new I wouldn't expect it to make its way to clinical medicine any time soon. But I'm thinking this may be a new POTS related type of glucose intolerance that doesn't fit in the current two (type 1 and type 2) known types. Time will tell.

I have had one incident that might be described as a hallucination. It was maybe three years ago. It was around lambing time and I looked out my kitchen window and very clearly saw a ewe with a newborn lamb trying to nurse. It was about 50 yards or less from my window so it wasn't hard to see or far enough away to normally imagine something was there that wasn't. It was too early for any lambs so I blinked and looked very carefully for a decent amount of time. I was certain I saw it. So I went outside and no lamb, just the ewe. I'm 67, have had sheep for nearly 30 years and have never had anything like this happen before or since -- with sheep or anything else. 

I have to say it really rattled me. Like the OP this was no fleeting glance, it was something that really seemed to exist. I don't specifically remember whether I was having a flare at the time but I did use to pass out a lot. Maybe the visual center of my brain was messed up from hypoxia or something. I've not been diagnosed with any mental health conditions and I'm not on any meds that would cause this.

Glucose intolerance is also being found in lean POTS patients. They found 50% of lean POTS patients have glucose intolerance in a small study. This is happening to me right now with post prandial glucoses right at 200 on multiple occasions. It should never be above 140. I have zero family history of either type of diabetes.

My quick notes on this video:

-- Basically, if a patient is demonstrating increased sympathetic activity, it can increase blood glucose. This is similar to the increase in sympathetic activity obese patients have.

--Pots patients tend to have normal fasting glucose levels versus obese patients developing type 2 diabetes. However they do have impaired glucose tolerance when challenged with a high glucose meal. It sounds like because of this, the A1C, while useful, may not indicate the degree of glucose intolerance the pots patient is experiencing. A standard glucose tolerance test is the best way to test these patients.

--Time frame of development of glucose intolerance is shorter in a lean patient with pots compared to an obese person who does not have pots.

--About 50% of lean pots patients have impaired glucose tolerance.

Here's the video:

https://vimeo.com/485528506

9 hours ago, Pistol said:

@toomanyproblems - hypoglycemia and glucose intolerance have been a problem for me since childhood, and both run in my family. So does POTS ( runs in the women of the last 3 generations ). I seem to get severe and sudden drops in blood sugar when I eat high sugar meals ( like pancakes with syrup ), with symptoms of sweating, hunger and weakness. When checked during these symptoms my sugar has been as low as 54. I know the symptoms and can stop the attacks right away by eating easily digested sugar along with some protein and carbs ( grapes or juice with peanut butter or cheese seem to do the trick fastest ). Yes, my autonomic specialist conformed that this is quite commonly related to autonomic dysfunction. 

I feel like I'd like to start a new topic on this. The glucose intolerance isn't something that seems to be known. I've been experiencing it since at least the end of last summer when I for some reason decided to check my blood glucose. I used to have glucoses in the range of 45 all the time. It was considered at the time to be from my adrenal insufficiency. Now my gastroparesis keeps my sugars up for prolonged times post prandial. I really don't know if I ever drop too low anymore because my emptying time is so random.   

Hypoglycemia after meals is known in POTS patients:

https://www.endocrine-abstracts.org/ea/0041/ea0041ep235

Glucose intolerance is also being found in lean POTS patients. They found 50% of lean POTS patients have glucose intolerance in a small study. This is happening to me right now. I have zero family history of either types of diabetes with a zillion relatives (for example, I have 50 first cousins). It must be the POTS:

I have hyperPOTS and got the Moderna vaccine back in Feb and March. My arm was swollen, worse the second time. Maybe felt a little fluish but nothing that noticeable in the grand scheme of my problems. Nothing happened that lasted more than a day.

I've been on immunoglobulin therapy off and on for nearly four years. Up until recently it was IVIg but because of covid I switched to subcutaneous Ig like p8d. It's very tough to get insurance to pay for it, but it's been the only thing that's helped my autoimmune problems. It doesn't help everything, but it makes most things much better.

10 hours ago, Elizaangelica said:

I know blood pressure increase is not the way that HyperPOTS is differentiated. I’m just curious about this because my diastolic (bottom number) always increases and my systolic (upper number) always decreases when I’m standing. I definitely relate far more to the HyperPOTS experience of the condition. Hormone testing to differentiate types doesn’t seem to be considered important here. My cardio wants me to keep increasing salt, but I don’t feel like it makes any difference at all.

Actually, some docs do use increase in BP upon standing (along with greater than 30 BPM heart rate increase) as criteria for hyperPOTS.

Like Pistol, I can have increase in both systolic and diastolic but more so with diastolic as my pulse pressure becomes more narrow. But I have also had what you describe on occasion -- a decrease in systolic and increase in diastolic. And sometimes I have classic postural hypotension, usually at night. I've also been surprised to find myself blacking out from a rapid drop in systolic upon standing and narrowing of pulse pressure even when the numbers are not in the hypotensive range. 

It seems like some experts don't like to classify this disorder into types because of variability. For myself, over the years, I seem to have gone from always having orthostatic hypotension to usually having a BP increase of some sort upon standing. And even now, my body likes to mix it up some just for fun  

So I'm not sure how neatly most POTS people fit into the distinct type boxes as defined at the moment.

Really, it depends on the strain you use.

On 4/11/2021 at 4:10 AM, EH89 said:

1. I can relate a lot to the symptoms of hyperpots. For those that have this, do you symptoms come and go in flares? Could this be a bad flare that I am in postpartum?

2. If it is hyperpots, is the possible autoimmune diagnosis related? As in, could I have an autoimmune condition this whole time that is causing the pots? I suspect Sjogrens because of the salivary gland issue.

3. I am finding it really difficult to cope at the moment, especially considering my daughter is so young. For those of you with children, and those without, how do you find hope? I don’t recognise the body I have now from 4 months ago, it’s crazy! And I’m terrified it’s only going to get worse. 

I missed this when first posted but maybe you still check the board. Pistol covered most things so I'll just share my experience. I had subacute thyroiditis when I was 32 and started having joint pains and other non specific autoimmune problems. After three miscarriages I finally had a baby girl at 33. The entire time I was pregnant I felt great. About four months after, the dam broke loose similar to what happened to you except it was different autoimmune diseases. Your positive ANA points to an autoimmune cause.

But the main thing I wanted to say is it's common for people with autoimmune disease to experience a remission during pregnancy. And it's also common to relapse around three or four months after the birth. The theory is your body suppresses response to "non-self" during the pregnancy so you don't reject the growing baby inside you. Since autoimmune disease is basically your body getting wires crossed and thinking "self" tissue is "non-self" it also suppresses this process also during pregnancy. This protection wanes after the birth.

As to your question what happens afterward, when my baby was 13 months old, I entered a PhD program and was able to finish in good time. With meds that is. In my case prednisone. After the baby was born up until I entered the PhD program, I was able to work at my previous job. I was able to enjoy my daughter and I could function normally for a time. I went on to develop several autoimmune diseases but I am not the norm. In retrospect, I think pushed myself too hard during that PhD period and my not listening to my body contributed to my development of more problems.

So, yes, you can recover but take care of yourself. Weigh your options on drugs to help and look at the cost benefit ratio.    

15 hours ago, CDNPortGrl said:

I remain hopeful that with COVID long haulers, a ton of research will go into this ‘finally’ and maybe new methods of improving people’s lives will develop. It seems to be a very much forgotten ailment and no one in the science world is doing much about it...at least from what I’ve learned. If a large enough subset of the population shows POTS like symptoms, it could spur much needed change. 

One thing I'd like to mention is I don't think POTS is a "forgotten disease." It's actually a new disease relatively speaking. It was only recognized as a syndrome in 1993. In the medical field, that's pretty new. Plus it's a very complex syndrome, causing a wide range of symptoms and appearing to have more than one cause. At this point even those subtypes aren't established. I know my doctors struggle with my symptoms.

When AIDs was discovered it was such a big deal that a bunch of money went into research very quickly (at least in research time). This research, in turn, not only helped AIDs but advanced the field of immunology, which had been stuck with the same ideas for decades. I was in graduate school during this time so I witnessed first hand the surge of new information. As unfortunate as Covid has been, research into it and long hauler aftermath may advance medical science in ways we can't predict at this time. I only hope it unlocks some of the mysteries to POTS. 

We had a forum member from the UK (I believe) who was a physician. She suspected early on after her POTS-like symptoms began that it was a CSF leak. She definitely had convincing symptoms to indicate a CSF leak, including the tell tale postural headache. Even so, it seems like it took her a long time to finally get the proper help.  Her moniker was bombshell. IDK if she's still on this forum but if you enter bombshell as a search word, you can probably access her posts. She was very informative.

2 hours ago, CallieAndToby22 said:

Well when I had the labs drawn for testosterone it said that adrenal hyperplasia was a possibility, CHP, so that is a primary adrenal disease that causes the adrenaline. There is also "adrenal PCOS". I will keep posted when I get full testing back. 

Yes, you're right. I forgot about adrenal hyperplasia and Cushings. PCOS seems not very well understood at all levels.

I would think a 24 hour urine for catecholamines would be easier for them to do and more available in labs than a sitting (or lying) and standing norepinephrine level. You may not catch the norepinephrine increase if it's too limited but if you do, it tells you something. So a negative may not rule out increased norepinephrine but if you get a positive you have an answer.

As to the OP's question: I have longstanding primary adrenal insufficiency (Addison's) for over 30 years. Since my adrenal glad is at least partially destroyed, I asked my endocrinologist why I was still producing adrenaline. She said that part of the adrenal glad was always preserved in her experience. So it appears unless you have pheochromocytoma, which untreated might advance fairly quickly (IOW you wouldn't have it for many years without knowing), I'm not aware of any other primary adrenal disorder that would cause increased adrenaline.  

On 6/3/2021 at 2:05 PM, p8d said:

Everyone else is correct about wearing them all the time. I have a great abdominal binder that I wear when I know I am going to be upright for long. I do take it off if I am going to be sitting in the recliner and not up and about much. It really helps. I will send you a PM with the brand. 

Could you please send me a PM on the brand as well? I need one and hate to just try a bunch without recommendations.

6 hours ago, CJ65 said:

@toomanyproblems and @Pistol Wellbutrin is neither SNRI nor SSRI. It’s in a drug class called: aminoketones. Maybe that’s why we can tolerate it better than straight SNRIs? 

Thank you! 

15 hours ago, E pots said:

I have heard SNRI's can make H pots worse.  Any other suggestion?  Thank you

If one has hyper pots I don't understand why an SNRI doesn't make it worse. Does anyone know? They seem to help some here with hyper pots who take them. 

Yes and how much I notice it varies. In the grand scheme of things it doesn't bother me that much. Maybe I'm just used to tuning it out. However, back in the fall when I was going through a really bad time it was like screaming in my ears and hard to ignore.

In answer to your title question I would say no, any cardiologist isn't better than nothing. At least not in my experience. Even the head of a very large cardiology department here did not know what POTS was. It was less than helpful. I've been to several non pots understanding cardiologists and it was a waste of time or worse. Even interpretation of tilt table results can be faulty if they don't have a basic understanding. I have not had a tilt table test but I've seen many people report (shown scans of results and reports not just their word) obvious POTS changes from tilt tables where the dr said the person didn't have POTS. And I'm talking what should be clear, defined, scientifically accepted diagnoses. POTS is complicated but some results shouldn't be.

Personally, having been to a million specialists for various problems, I would find the most knowledgeable person for the suspected problem and wait it out the best you can. 

I'm so sorry you're going through all of this. Horrible as it is to write, these weird things you describe seem common or at least not unusual with POTS. I've had POTS for at least 10 years. The only thing encouraging I have to offer is that my symptoms tend to wax and wane on a relative scale. Even if I'm bedridden for a while, I've always eventually gotten up and functioned on a better level for a while.

But I'm 67 and have a lot of other problems so they're probably influencing my ability to function. A lot of younger people with POTS get better or are considered cured. 

I would be very interested to hear how your visit with Mayo Clinic goes.

I have a bunch of autoimmune diseases. I had both sets of the Moderna vaccine. Last shot March 3rd. I did fine. I don't take flu shots because of problems. But this was worth the risk.

About how much does it cost without insurance?

Me too. Gastroparesis.