A thread to share your experiences of orthostatic intolerance - problems being upright.

I wasn't sure what OCHOS was (brain fog as usual?) so looked it up on here - it's orthostatic cerebral hypoperfusion syndrome.

 

Finally responding to this, hope it helps and is not too late.

Symptoms:

My main orthostatic intolerance (OI) symptoms are nausea, increased heart rate, feeling lightheaded, feeling short of breath, not being able to think very well, not being able to talk much. I tell people I need to sit down before I can think. I tell my husband that he needs to wait until I'm sitting down to ask me a question. Even if it's something quite simple I often can't think and can't answer while I'm standing. I sometimes get a cold sweat or clammy feeling.

If I'm standing then I quickly feel a strong urge to *sit down now*. Putting my feet up helps even more - sitting on the couch with my legs crossed, lying in the recliner, or lying down flat (couch or bed).

I sometimes get the classic "coat hanger pain" between my shoulder blades. What helps relieve the pain for me is lying down with my feet higher than my head.

I often get chest pains. I think this is also a symptom of OI even though it doesn't often happen while I'm standing. It usually happens later on. Two reasons why I think chest pains are due to OI:

1) I got the same kind of chest pains on the tilt table test right before I fainted
2) several of the POTS documents mention chest pain as a symptom

My husband once commented on my "chair seeking" behavior as I go around the house on bad days. He said it's like someone swimming under the ice and looking for the next ice hole so they can come to the surface and take a breath. I thought that captured it pretty well. I can walk quickly from one place to the next (no problems with weakness) but I then I need to sit down.

Triggers:

As far as posture or position the worst symptoms come when I try to stand still, e.g., waiting in line at a store, trying to talk to someone while standing.

Next in line would be sitting upright at a desk with feet on the floor. For example, as a software engineer I used to sit still while coding for hours at a time. And then I wondered why I felt so bad the next day (I didn't realize it was a form of PEM). This may be a combination of mental fatigue and the muscle use (muscles used while sitting vs. reclining or lying flat). I'm not sure exactly how the OI interacts with PEM caused by mental/physical exertion.

At any rate, sitting upright in a chair with my feet on the ground will still cause symptoms for me eventuallly, it just happens more slowly than standing.

Heat is another big trigger. If it's too warm (that's over about 74 degrees F / 23 degrees C for me) my OI symptoms will come on more quickly.

If I've been resting a lot then my OI is not as bad. It takes longer to get to that "I have to sit down now" feeling.

But if I'm in PEM, or I've just been walking for a bit, then I feel more of that urge to sit down quickly.

Car seats can recline a bit so they are not as bad as straight backed chairs or benches. Benches without any back support are also more likely to cause symptoms than a chair with some angle and with back support. Some of this is an overlap between OI and just using muscles (exertion) so it's a bit hard to disentangle.

Having a full stomach (right after eating a full meal) makes symptoms worse. I need to rest for at least an hour after meals. If I want more energy so I can attend some event or finish some task I will skip eating. An empty stomach makes things easier.

Fainting:

I've only fainted 3 times. Two of those times happened during a tilt table test (1995 and 2003), just from standing, no isoproteronol was injected. I started getting symptoms at about 5 minutes but it took between 20 and 30 minutes before my blood pressure (BP) suddenly dropped to something very low (unmeasurable by the devices that were attached) I fainted.

After I fainted they put the table flat and gave me a saline IV to help me recover. My heart rate did increase some at the start but not enough for the diagnostic criteria for Postural Orthostatic Tachycardia Syndrome (POTS).

The diagnosis I got in 1995 was Neurally Mediated Hypotension (NMH). There have been a lot of changes since then and I don't know if the current diagnostic names are the same. But my understanding is that in spite of one the words being the same this diagnosis is different from the more typical Orthostatic Hypotension (OH) where the blood pressure drops within a few minutes of standing. If I'd had OH it would have been diagnosed more quickly since I never had any problem with the BP tests in the doctor's office where BP is taking while sitting then standing.

Many years later (not sure when, at least 5-6 years?) I did have an increase in heart rate on standing that met the POTS criteria. So my cardiologist said I had both NMH and POTS.

Things that help me:

I take midodrine, a prescription medicine, which is supposed to help keep the blood pressure from dropping.

I take salt tablets with meals every day. My diet wouldn't have much salt in it if it weren't for these salt tablets.

On an as needed basis I drink an electrolyte mix or ORS (oral rehydration solution). I use either unflavored pedialyte or something like Normalyte (a powder you mix with water). I feel better when I use an ORS that has some kind of sugar (e.g., glucose) although I have read other folks saying they don't notice any difference.

I avoid being in the heat. Our house and car have air conditioning for when it gets hot. Getting "pre-chilled" (being in the A/C and also drinking cold drinks) can help me to tolerate the heat (prevent the nausea and feeling dizzy or lightheaded) for a short time if needed.

I wear compression socks if it's not too hot. I think they help when I have to be upright for longer periods of time but I'm not 100% sure.

I rest in the recliner with my feet elevated.

I use a folding cane/seat for when I need to wait in line. It is not comfortable for more than 5-6 minutes (no back support) but it does help to be sitting instead of standing. So, it's not helpful for long lines but good for short lines.

I use a wheelchair in any situation with a long line (e.g., the airport).

 

For the last month I have found ORS wonderful in reducing my calf cramp, dorsa flexion following an ankle injury 5 years ago and general widespread joint pain. The calf pain was diagnosed as over training syndrome but to me it felt like being held at the get-set moment permanently. I started with a daily sachet for a week but then reduced to half per day. Intentionally missing doses caused the symptoms to gradually return including the flexion. I certainly feel better and have slightly better sleep and energy.