Addressing blood pooling

[marcjf]

Vascular dysregulation has been one of my most pressing Long covid symtoms.
The worst part about it is the blood pooling in my feet.

In the beginning I could sit up to work without issues. Around one year into the illness, I had one episode where I believe I overexerted myself, mainly my legs while swimming. I think this episode in particular caused some damage that I haven't fully recovered. I had a lot of inflammation initially, which then subsided. However from that point on, pooling has become more pronounced, I would say. I have no varicose veins, or anything visible. It is just that if I sit down for too long, I will get a burning feeling in my feet, which is debilitating. Nowadays I have to raise my legs to work, and It is not a good long-term solution.

I tried a couple of things. First I gave a shot to medical-grade compression stockings, prescribed by my doctor, but they did not work at all. HCSE and Butcher's broom also did not help either.

The things that help me increase a little bit the tolerance to sitting are Mestinon or Midodrine. However, it is nowhere close to where I want to be. I can't rely on them to work full-time.

What can I do to help reverse the pooling in a permanent way? What are some of the most battle-tested therapies?

 

[Judee]

Some have said having the head of your bed elevated (I know seems counterintuitive) so that your feet are slanted down can help. ?? https://dropitlikeitspots.com/elevating-the-head-of-the-bed-for-pots/

I did try it but only with a 2x4 under the headboard to start. It's a little difficult getting used to and I do wonder if it caused back issues for me where I also have some scoliosis but anyway, just something to try possibly.

 

[Sushi]

What can I do to help reverse the pooling in a permanent way?

That is the huge question with no answer yet. Small frequent meals seem to help rather that less frequent large ones. Meals with lots of carbs seem to increase pooling. You may not realize it, but most of us get pooling in the lower abdomen as well and some find that abdominal binders help.

The right drugs for you (there are many and it is highly individual and usually requires a cocktail of several) can help as long as you take them. For me, compression garments are the most important thing. What happened when you tried the compression stockings? They need to be the right length for you (knee high, thigh high or full tights) and they need to be the right compression level. I have tried different ones and I do best with the 25 - 30 level knee socks. The fully stockings drive me nuts and are so hard to get on that you need to rest for most of the day from the exertion!

And then lots of electrolyte fluid, preferably low sugar, and lots of salt help many. We actually have low blood volume and fluids, electrolytes and salt help restore levels. The sports drinks aren't good enough.

Have you seen an autonomic specialist and had autonomic testing (Tilt table test etc.) The tests will give a specialist an idea of the best medications for you. I wish we knew more--the only comfort is that there are lots of us here in the same boat.

 

[Shanti1]

I tried a couple of things. First I gave a shot to medical-grade compression stockings, prescribed by my doctor, but they did not work at all. HCSE and Butcher's broom also did not help either.

The things that help me increase a little bit the tolerance to sitting are Mestinon or Midodrine. However, it is nowhere close to where I want to be. I can't rely on them to work full-time.

I had a pretty sudden onset of orthostatic intolerance after attempting a bike ride back in May. I also have pooling and a worsening of neuropathy if I let gravity have its way. The pooling is not really visible, but I feel it. For me, compression stockings have been the most effective tool. I put on full length 30-40mm/hg before I even get out of bed. I also use abdominal compression. The compression stockings are a pain, but I'm not functional without them.

In my case, the medication atomoxetine has been the most helpful and I had no benefit from mestinon, midodrine, fludrocortisone, or the herbals you mentioned. I seem to have a failure of sympathetic innervation to my blood vessels. I'm guessing that along with the sensory neuropathy, I have autonomic neuropathy that is contributing or causing the issue.

I read that elevating the head of the bed could be helpful because it causes the kidney to eliminate less urine at night, so you wake with a higher blood volume. However, in my case, it seemed to exacerbate my symptoms.

There is a peptide called ARA290 that has some human research on regenerating small fiber nerves that some people report has helped them if you think your lack of venous return has a peripheral neurogenic origin. It is injected subcutaneously.

 

[fiesta]

hello members,
Currently i,m trying to lift my feet during the night (I can adjust it with an electric motor), this is based on my own feelings/impuls always trying to keep my feet high during the day and the instructions from cardiologist Mr Visser (see you tube footage, he does discuss this subject with the Irisch me support group).
So, this is the oppossite of what is suggested in this topic.

Greetings Europe

 

[Sushi]

In my case, the medication atomoxetine has been the most helpful

This was the most helpful drug for me as well, though this may not be the case for the majority as it increases norepinephrine in the synapses.

 

[Shanti1]

This was the most helpful drug for me as well, though this may not be the case for the majority as it increases norepinephrine in the synapses.

That is a very good point. It reminded me of a study I had seen recently in a presentation a Dr. Raj who specializes in dysautonomias. The atomoxetine made the POTs worse because it was increasing epinephrine on top of an epinephrine surge when subjects stood up (see slides below).

I think it is helpful for be because I don't get any tachycardia when I stand, my heart seems to care less that all my blood is rushing to my feet and I'm becoming cognitively impaired. I just don't seem to have any sympathetic tone or response to poor venous cardiac return.

 

[marcjf]

I had a pretty sudden onset of orthostatic intolerance after attempting a bike ride back in May. I also have pooling and a worsening of neuropathy if I let gravity have its way. The pooling is not really visible, but I feel it. For me, compression stockings have been the most effective tool. I put on full length 30-40mm/hg before I even get out of bed. I also use abdominal compression. The compression stockings are a pain, but I'm not functional without them.

In my case, the medication atomoxetine has been the most helpful and I had no benefit from mestinon, midodrine, fludrocortisone, or the herbals you mentioned. I seem to have a failure of sympathetic innervation to my blood vessels. I'm guessing that along with the sensory neuropathy, I have autonomic neuropathy that is contributing or causing the issue.

I read that elevating the head of the bed could be helpful because it causes the kidney to eliminate less urine at night, so you wake with a higher blood volume. However, in my case, it seemed to exacerbate my symptoms.

There is a peptide called ARA290 that has some human research on regenerating small fiber nerves that some people report has helped them if you think your lack of venous return has a peripheral neurogenic origin. It is injected subcutaneously.

Atomoxetine can be helpful, but how did you overcome the constipation that it can cause? It's fairly well documented.

 

[Shanti1]

Atomoxetine can be helpful, but how did you overcome the constipation that it can cause? It's fairly well documented.

Constipation never manifested as a side effect for me. If it had I may have tried flax seed, prunes, magnesium, vit C, or a number or other remedies out there. However, ended up using droxidopa and compression as the primary ways to manage my orthostatic hypotension. I still take atomoxetine though a 2-3 x week for a mental boost. I also tried ARA290, but did not find benefit from it.