u/realmao14

Whenever I am sleeping I get numbness and tingling in my limbs. When I wake it kind of dissipates, but then happens all over once I fall asleep. Some nights are really rough. I wake up with nerve excitability and pain, brain buzzing and brain on fire kind of feeling. I did have what seemed to be some sort of CO2 exchange issue a while back, I taped my mouth during sleep and that kind of went away. The CO2 exchange issue felt like a lot of air hunger, exercising intolerance, a lot of lightheadedness and dizziness brain fog etc. But now I’m left with this and wondering what it could be. Pulmonary function test seems normal. This seems to be a little bit over my doctor’s head so I’m finding a new one but curious to see if anybody has ever experienced something like this that could point me in the right direction?

Whenever I am sleeping I get numbness and tingling in my limbs. When I wake it kind of dissipates, but then happens all over once I fall asleep. Some nights are really rough. I wake up with nerve excitability and pain, brain buzzing and brain on fire kind of feeling. I did have what seemed to be some sort of CO2 exchange issue a while back, I taped my mouth during sleep and that kind of went away. The CO2 exchange issue felt like a lot of air hunger, exercising intolerance, a lot of lightheadedness and dizziness brain fog etc. But now I’m left with this and wondering what it could be. Pulmonary function test seems normal. This seems to be a little bit over my doctor’s head so I’m finding a new one but curious to see if anybody has ever experienced something like this that could point me in the right direction?

I’ve had this irritation and spasming on the right side of my upper abdomen for years but lately it has gotten really bad and causes spasms. I don’t know, can’t distinguish if it’s an esophageal spasm or diaphragm spasm, but something is getting really irritated in that right side upper region next to the xiphoid process, to the point that it causes spikes in BP, palpitations, dizziness, you name it. I have a colonoscopy coming up, but worried GI doctor, like always, will say “here take some omeprazole” and send you home. Anyone else experience symptoms like this? I did a fast for 3 days and it really calmed the irritation but came back within a few days which is why I think it’s gastritis.

I’ve tried zinc carnosine and l glutamine for about a week now and they initially helped, however had some coffee yesterday and it flared like never before and can’t calm it. I’m even looking into FMT (fecal matter transplant), as I’ve read people have had success with that for gastritis, IBS, and obviously improving the microbiome .

Hope you find your healing!

I’ve had this irritation and spasming on the right side of my upper abdomen for years but lately it has gotten really bad and causes spasms. I don’t know, can’t distinguish if it’s an esophageal spasm or diaphragm spasm, but something is getting really irritated in that right side upper region next to the xiphoid process, to the point that it causes spikes in BP, palpitations, dizziness, you name it. I have a colonoscopy coming up, but worried GI doctor, like always, will say “here take some omeprazole” and send you home. Anyone else experience symptoms like this? I did a fast for 3 days and it really calmed the irritation but came back within a few days which is why I think it’s gastritis.

I’ve tried zinc carnosine and l glutamine for about a week now and they initially helped, however had some coffee yesterday and it flared like never before and can’t calm it. I’m even looking into FMT (fecal matter transplant), as I’ve read people have had success with that for gastritis.

Hope you find your healing!

I take the 5mg twice daily and since I started I have massive joint, muscle and nerve pain. Doctor says it’s not the Eliquis but I don’t agree. Anyone else?

Have the third infusion tomorrow and actually kind of scared. Did fine after the first one on Friday after the second one I felt OK but the following day and today have been rough in terms of pain and heavy legs, nausea and just a crappy overall feeling. Anybody else experience this? My doctor suggestion today was to increase the dose by 20% tomorrow for the final dose to ensure we get the best possible pain reduction benefit. But I’m really nervous since I feel so much worse yesterday and today after the second infusion.

A quick internet search says:

“Heart palpitations are generally not a direct side effect of Eliquis (apixaban) itself. Instead, they are typically a symptom of the underlying conditions it treats, such as Atrial Fibrillation (AFib).”

I’ve had a ton of palpitations after starting Eliquis! A week into starting I even had a severe bout of them to the point of nearly collapsing and having to go to the ER. I thought it was a PE, but CT came back clear. Felt better the following day but PVCs remained. Maybe the manufacturer doesn’t want to list more side effects than it causes, but it definitely causes palpitations!

Hello everyone, going crazy trying to figure out the cause of my worsening symptoms. On June 6th I had a stent for an 85% iliac compression. Immediately following the stent I honestly felt on top of the world. I literally balled my eyes out because I couldn’t believe I’d finally found relief. Unfortunately, that was short lift because about a week later I developed clots and everything went downhill to say the least.

I was on vacation when that happened and thankfully found a vascular doctor in Mexico that helped detect clotting and some reflux. It’s been hard advocating for myself as doctors just don’t believe that the leg or pelvis can be the cause of so many upstream symtoms. Upon returning home I immediately saw my Interventional radiologist, he did a follow up ultrasound and venogram to ensure the stent was patent, which it is. There are some smaller clots in the stent, a small one in the calf, one above the knee, a big one around the thigh causing full occlusion there, but I have blood flow probably from collaterals. Problem is, I feel worse than before I got the stent and had the compression. So bad that I landed in the ER from a scare.

Nothing else has changed post stent other than the thrombosis with reflux and being put on Eliquis for the clots. I’ve had CTAs done which showed nothing. So the only thing that could have made things worse are the clots or the Eliquis. I decided to log everything with chatGPT and send my dr an email that could hopefully convince him to take more actionable steps than just waiting an eternity for the clots to dissolve if they even do!?

I apologize for the insanely long post, but the question is, am I looking at this the right way? Or, due to the stress am I overthinking and over analyzing the burden these clots and reflux could be causing? Is it not enough to be causing these things outlined below? To me, it makes sense that symtoms were bad prior to the stent, improved dramatically post stent, then returned with a fury upon thrombosis. ChatGPT seems to agree, although I always second guess it due to possible error and guided answers. Could it be the Eliquis side effects? I feel like I’m at a dead end with nothing left to turn to medically.

Here is the email I sent my Dr if you’re up for a read. Thank you!

On June 30th I was out walking and had an episode of extreme fatigue/lethargy, shortness of breath, tachycardia, and increased BP. Lying down felt slightly better, but getting up made it worse. Due to the blood clots I went to the ER to be safe. During this episode, ekg also detected st segment deviation which I understand simply means the heart is being stressed out by something enough to show as a change on ekg. ER did a ct of brain and chest and found no PE or brain aneurism.

I’ve been taking it a bit easier since, treating it like an orthostatic/pots like reaction and been feeling better. 
I have been trying to get to the bottom of the reason I feel so unwell and I think I may be on to something. Post stent, I felt amazing. Better than I have felt in a decade. Had no orthostatic/pots like issues at all the days immediately following the initial stent. That all turned around when thrombosis started, and since then I actually feel worse in many ways. In my opinion, that is a direct correlation.

The question is, why since the stent is patent and there is flow. Iliac flow should be better despite thrombosis. However, after researching further, trial and error with triggers that bring on symptoms, and going over the tests and imaging I’ve had done, it occurred to me that the ultrasound I had done while in Mexico showed blood flow reflux. I wonder if that was present prior to receiving my stent, or brought upon from the thrombosis? The predominant symptoms right now are orthostatic intolerance nature where lying down simply feels better than standing up. Standing up causes lightheadedness and sensations of a lack of venous return, like body circulation cannot keep up. Post stent, exertion output felt improved even, and now it is feels substantially reduced. Simple tasks feel extremely “heavy.” In my opinion, the thrombosis combined with the reflux are the cause, especially since all other imaging (ct from the ER and cta ordered by Dr reddy and my primary) are normal. 

I have been logging my reports, progress and symptoms with AI, and it seems the reflux is in significant enough veins to causing this combined with the thrombosis. I have the following please for Dr Reddy to consider;

Does the ultrasound report from Mexico show reflux?

Yes—your report actually does document reflux, and it’s one of the more important findings. The question is where the reflux is occurring.

The key sentence is this (translated):

“Existe inversión de la onda al Doppler espectral en el sistema venoso profundo, afectando la vena femoral común, vena femoral superficial en el primer y segundo tercio…”

Translation:

“There is reversal of flow on spectral Doppler in the deep venous system, affecting the common femoral vein and the superficial femoral vein…”

That sentence is describing venous reflux (backward flow).

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The impression (Diagnosis #2) is even more explicit:

“Insuficiencia venosa del sistema profundo y superficial del miembro pélvico izquierdo…”

Translation:

“Venous insufficiency (reflux) of the deep and superficial venous system of the left lower extremity…”

It then lists the affected veins:

**• Common femoral vein**
**• Superficial femoral vein (first and second thirds)**
**• Great saphenous vein (upper thigh)**

So the radiologist is saying there is deep venous reflux, not just superficial varicose vein reflux.

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Does it specifically say the iliac vein is refluxing?

No.

This ultrasound does not visualize the iliac vein well enough to diagnose iliac reflux directly.

Instead, it shows reflux downstream in the:

• Common femoral vein
• Femoral vein
• Great saphenous vein

The ultrasound cannot determine whether that reflux is:

• caused by valve damage from years of May-Thurner,
• caused by persistent iliac obstruction,
• caused by the recent thrombosis,
• or a combination of these.

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Could the iliac vein still be the underlying cause?

Yes.

Because you had:

• 85% left common iliac vein compression
• Long-standing obstruction before the stent
• Then thrombosis after stenting

all of those can lead to elevated venous pressures and eventually damage the valves in the femoral veins, producing the reflux your ultrasound detected.

However, this ultrasound cannot prove that the iliac vein itself is currently refluxing. It only proves that reflux exists in the veins it examined.

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One thing that stands out to me

The report diagnosed deep venous insufficiency only 13 days after your stent placement and at the same time it found subacute thrombosis of the superficial femoral and popliteal veins. That makes interpretation more difficult, because an acute or subacute DVT can itself cause abnormal flow patterns and temporary reflux. Some of the reflux may improve after the clot resolves, while some may persist if the valves were damaged.

The next study that answers your question

The best test to determine whether the iliac vein is still contributing is not another leg ultrasound. It would usually be a follow-up with your vascular specialist using:

• a dedicated iliac venous duplex (if technically feasible),
• CT or MR venography, or
• if symptoms remain significant, repeat venography with IVUS, which is considered the most definitive way to evaluate the iliac vein and stent.

Given your history, I think it’s very reasonable to ask your interventional radiologist: “Is the deep venous reflux I’m showing secondary to long-standing May-Thurner, or do you think there’s still an iliac outflow problem despite the stent?” That’s exactly the question these follow-up evaluations are meant to answer.

Can this reflux be occurring due to the clot? mainly the big clot? I felt perfectly fine before the clot. Are the veins where the reflux is occurring significant enough to be contributing to the upstream venous symtoms I’m experiencing?

This is an excellent question, and I think your timeline is actually one of the most important clues.

Based on what you’ve told me:

• **Before the clot: You had significant May-Thurner compression but were active. You were running, going to the gym, and although you had some symptoms, you did not have the profound orthostatic intolerance and weakness you’re describing now.**
**• After the stent: You initially experienced a dramatic improvement in many symptoms (head burning, tinnitus, post-meal symptoms), suggesting that improving iliac outflow had a real physiological benefit.**
**• After the thrombosis: You developed much more severe symptoms, and your ultrasound documented both subacute DVT and deep venous reflux.**

That sequence makes it very plausible that the clot changed your venous hemodynamics.

Could the clot itself cause the reflux?

Yes—absolutely.

A large clot in the femoral or popliteal veins can:

**• Prevent the vein valves from closing properly.**
**• Distort blood flow around the clot.**
**• Increase venous pressure below and above the clot.**
**• Produce temporary reflux while the clot is present.**

Sometimes the reflux improves as the clot resolves. In other cases, if the clot damages the valves, some reflux can become chronic (known as post-thrombotic syndrome).

Your ultrasound was performed while the clot was still described as subacute, so it captured the veins during an abnormal state.

Could these veins contribute to your “upstream” symptoms?

This is where it’s important to be careful.

The reflux documented involves the:

**• Common femoral vein**
**• Femoral vein**
**• Great saphenous vein**

These are major venous outflow pathways from the leg. They are certainly important enough to cause:

**• Leg heaviness**
**• Leg swelling**
**• Venous hypertension**
**• Reduced exercise tolerance**
**• A sensation of poor venous return from the affected limb**

Whether they directly explain symptoms like chest tightness, palpitations, or orthostatic intolerance is much less certain.

Deep venous obstruction or severe outflow impairment can reduce venous return from the leg, but the body usually compensates remarkably well through the opposite leg and pelvic collateral veins. So while your leg venous disease may contribute to feeling unwell, it’s difficult to attribute all of your upstream symptoms solely to the reflux seen on the ultrasound.

Your timeline is important

One aspect that supports continuing to investigate the venous system is this:

**• You improved dramatically after the iliac stent.**
**• Then worsened after developing the DVT.**
**• The ultrasound during the DVT showed reflux.**

That makes me think the clot may have either caused or unmasked the reflux.

What I’d want to know next

After you’ve been on anticoagulation long enough for the clot to organize or resolve, I’d be interested in seeing:

1. Is the clot gone?
2. Is the deep venous reflux still present?
3. Is the stent widely patent?
4. Has the reflux improved compared with the acute study?

Those answers are much more informative than the ultrasound performed during the active thrombosis.

My impression

Given your history, I think it’s more likely than not that the clot contributed to the reflux seen on this study. Whether the reflux becomes a long-term problem depends on how much the valves recover after the clot resolves. Since you felt substantially better before the thrombosis, there is reason to hope that at least some of the abnormal flow is related to the clot itself rather than permanent valve damage.

That’s a very reasonable topic to discuss with your interventional radiologist at follow-up, because repeat imaging after treatment can show whether the reflux persists or has improved.

I had an 85% iliac vein compression which was stented. Post stenting I developed clots in the leg about four of them one almost full occlusion, and several in the stent. There is still blood flow I’m assuming from years and years of collateral’s developing and helping with blood flow, my question is my doctor is simply treating with Eloquis, which I’m OK with, but have been reading about clots and my concern is the one that is causing full occlusion in the thigh, will that one develop into a permanent or hard clot since it’s bigger? Is my better option to seek someone that can do a thrombectomy now rather than later since it’s fresh (a couple weeks old)? The radiologist I see right now just wants to treat it with Eloquis. I’ve read a lot of people tend to actually need the thrombectomy later on. What would you do? Thankfully I don’t have too many symptoms. Some pain here and there probably due to the collaterals I developed over at least a decade of compression. What would you do?

How long did it take you?

I recently had an iliac vein compression stent put in and developed 4 blood clots across the leg. Doctor wants me on eloquis and says they’ll go away. However, im suffering more than I was with just the compression before the stent. What warrants a doctor performing Thrombectomy vs waiting it out on blood thinners?