JimL

On ‎3‎/‎24‎/‎2019 at 1:19 PM, Pistol said:

Dear @JimL - the conditions you listed are all CHRONIC conditions, meaning there is no cure - only symptomatic relief. And not all of them have been identified as a definite cause of POTS. 

Some PNS can be successfully treated, like thymomas and some other tumors. Usually when the underlying cause goes away, so do the symptoms.   DINET's website lists them as causes. 

On ‎3‎/‎24‎/‎2019 at 10:43 AM, toomanyproblems said:

 

I disagree with you Jim. If you look at people posting on dysautonomia forums as being somewhat representative of number of cases, rather than number of causes you listed, Pistol is correct.

I've had this for long enough to have seen a lot of people posting on forums. In the end, with the exception of kids, who can grow out of it, people mostly have symptoms managed and never know the cause.  POT as a catch all syndrome diagnosis has only been around for two or three decades. Even that as a syndrome can be a difficult diagnosis to obtain. Running down causes and specifics for treatment can be elusive. Not to be pessimistic. That's just the reality of it. I have a several rare diseases. POTS was actually not hard for me to get as a diagnosis and is one of the easier ones for me as far as disease recognition for heath care professionals I encounter. But on the scale diseases for most people I think it's very frustrating.  

I look at the whole picture, not just what's typical. Big picture. Not everyone fits into what's most prevalent. 

On ‎3‎/‎24‎/‎2019 at 6:11 AM, Pistol said:

In most cases of dysautonomia the underlying cause cannot be determined or if it can then there is nothing to do about it ( like EDS or hyperadrenergic ). Currently there is no cure for dysautonomia and the treatment is to manage the symptoms. 

According to the DINET website, there are a lot of underlying causes. I think some of your answer lies with who gets POTS mostly and  the causes for them, but PNS/Carcinoid, Parkinsons, MS, Amyloidosis, IBD, Crohns, Celiac, etc are all identifiable and to some extent treatable, although some have no positive outcome. I would bet for a lot of males, especially those over 50, the reasons for POTS maybe different and therefore the treatment different. 

At least you got your PCP to run tests. I asked for a full thyroid panel and all they did was TSH and free t4 PNS and carcinoid are worrisome. I wonder about that too. MCAS? DK. If I had a couple thousand to spare, I'd just get all the blood tests myself to rule out or in something in the list of underlying causes. 

4 hours ago, blizzard2014 said:

The smoking, high blood pressure dating back years, and being an uncontrolled diabetic at the time of the blood clots could all have been contributing factors. I always had burning in both legs when walking too far and when running. Even today, if I walk too far, the legs start burning. So maybe I already have some peripheral vascular issues going on. But the burning is better with blood thinners. One time not too long ago, when my INR was low 2.1, I walked through a parking lot and legs were burning so bad I could no longer walk. Even the good leg was burning and I had to sit on a concrete lamp post thing for 5 minutes. I would not have been able to run from a dog if one came to bite me at that point. So, the higher INR has really helped me with this. I used to not even be able to make it to the back of a Wal-Mart store and back out without having to stop and rest the legs.  So, there probably is more going on here. I maybe didn't heal as good, or have poor collateral veins. Sometimes you can grow good collateral veins and that will pick up the slack for the blocked veins. 

Makes more sense now. 

1 minute ago, cal said:

I was hospitalized for this last June, where i was tested for Guillian Barre syndrome and treated accordingly, but they were not able to come up with a definitive diagnosis. Just that I may have complex regional pain syndrome. 

Did you have Guillain Barre?

Have you have brain and spine imaging and any neurological studies? Spinal tap? That's not good. 

11 hours ago, StayAtHomeMom said:

That's where I am as well. My doctors don't seem to care why just throw medicines at me. 

They are treating the symptoms and not the cause because that's how they are trained and either they don't know what causes it and they don't want to try to find out or they can't because they don't have the tools yet. Unless someone loses consciousness, they won't have a sense and urgency and depending on where you are, even then. 

8 hours ago, blizzard2014 said:

That's what they called my clots. It says in the report "chronic post phlebitic changes noted!" So, maybe it is similar to what you have. I do know that the valves can also be damaged even if the clots have cleared out. I never noticed POTS symptoms until after clots, so maybe blood pooling in the legs is the cause. Very interesting. My changes are in the Popliteal vein and then the two vein to the right and left under the knee in the calf. More lower than higher.  I used to smoke until after the clots in the lungs. My lungs for whatever reason are so jacked that one cigarette will leave me sick for an entire day. Maybe it was the high BP and the cig. But the last time I smoked a few years back, I was sick all day. So I have an aversion to cigs. I will not attempt to smoke lol. But I did smoke from age 15 to age 36 at least a pack a day.

Could be the difference. I never smoked, at least habitually. Maybe a cigar once a year or less on average and not in 16 years now. 

8 hours ago, Derek1987 said:

Well hopefully this bed ridden life doesn't cause blood clots. I take aspirin one to 3 times a week for headaches. I read aspirin keeps your blood less sticky for 7 days after consumption. I know taking that much aspirin isn't good for you either. What a mess. I was curious because my right calf muscle mysteriously gets really sore every few weeks. Always my right calf muscle. No swelling though.

Just try to get up and walk around a bit every hour or two that you're awake. Aspirin is hard on the stomach, but for blood thinning, 1 a day is fine. 

49 minutes ago, blizzard2014 said:

Yes, I do have a bad tolerance to chronic pains. Acute pains I have had and rough it out. I had the Gallbladder pain/discomfort that was horrible and I was able to ride it out better because I know it was only temporary.  At best, it would last for 3-4 hours. I had to ride it out any how lol because I tried once to take a Norco during an attack and I would just vomit it right back up. I could not hold the pain med down. As soon as I could feel the gallstone move and stop blocking, the pain was gone. I work with painful headaches and my teeth hurt all the time because they are breaking due to jaw clenching. But the chronicness of the leg being in almost the same amount of pain that it was when I first got hurt and had clots back in 2011 is just crushing to me.  I also had to double up on Norco meds for 2 weeks after my gallbladder surgery. That was mostly because I had a tolerance to the meds and needed more for the higher level of pain. After I healed, I went back to my 3 pills a day. I was taking 20 mgs at a time every 8 hours after GB surgery and now take 1 Norco 10 every 8 hours for leg pain.  A lot of day snow I take one ever 8 hours twice and then a half a pill at night. When I work I take more though or else I cannot stand long. So, even the 4-5 hours I can stand up and move around are kind of fake, because I can only do it with meds. Without meds, it takes 30 minutes to an hour of walking or standing to have enough pain to have to sit back down and elevate my leg. I spend 90 percent of the waking day with my leg elevated and that really helps cut down on pain meds. 

I used to be much tougher before. I had vicious dog attack and did not take pain meds. I had a complex facial surgery when I was 15 for 12 hours and took no pain meds. Both my jaws were broken and put back together with metal pins, all my wisdom teeth were removed etc. But the chronic pain that I know will always be with me really gets me down. I'm hoping they can inflate my bad vein and insert a stent into it and allow more blood to pass and maybe it will fix me. They have three doctors in USA who can do this with chronic blood clots and one doc in UK does it as well. The ones in US pioneered the procedure and the one doc in UK switched from general vascular surgery and dedicates his entire medical practice to helping those of us who have Post Thrombotic Syndrome.  The UK doc became aware of thousands of patients who are told to wear compression socks and have their condition dismissed told to just deal with it, and he said that it is unacceptable. My doctor calls PTS a minor annoyance and to just ignore the pain. How can you ignore not being able to walk far, or run? I can't even climb the stairs with my right leg. I have to walk up sideways and come down sideways with my shoulder sliding against the wall for support. The leg is only working at 50 percent capacity compared to how it was 7 years ago. He said that some of us with this condition have a quality of life the same of that of a person with cancer who is on chemotherapy. He shows a video of how strong scar tissue can be in the veins that he was inflating a scarred vein with the same PSI of a car tire, and the vein was able to pop the balloon. 35 PSI and it popped the stent balloon. They had to design very special high quality stents to hold up against the immense force of the scar tissue. My vascular doc will not know of this procedure. He will only be the kind that fixes varicose veins or arteries. But imma give him a link to this other doc's Youtube channel and maybe he can watch the procedure and then consult with said doc and help me out. I will see if I can find the video so you can look at it, because even though you do not have pain, you do have on-going impact from chronic clots. Dr. Mark Garcia also does this procedure. There is a doc in Stanford CA too, he actually pioneered the procedure. 

You have a lot going on. Do you smoke or have you? The vascular doc made a big deal out of that. I have what they call post phlebitic leg syndrome. Swelling from the incompetency of the internal veins The three clots I got lodged in the valves of the deep saphenous vein. This causes a slow down in the return to the heart. So if I have POTS, this can't help. 

9 hours ago, Derek1987 said:

What symptoms did you have that helped you find out you have blood clots?

I had mono real bad and then I got a strep throat so bad they hospitalized me. A week after I got out of the hospital I was back on my feet again and one day I was changing to go out with my girlfriend who is now my wife and my calf was huge. I knew exactly what it was. I had crappy insurance that required me to go to their clinic, which was in another town 15 miles away and the Indian doctor said in his accent, you have a blood clot. You must go to the hospital right away. No shite Sherlock. I was in the hospital 5 days from the strep and a week for the blood clot. Some people never get that warning and it kills them because the clots travel to the lungs. That was in 1993. 

22 minutes ago, blizzard2014 said:

Wow, you still have extensive clots. I really feel for you. I wonder if I may have something else going on causing my pain like the clot behind knee pressing on a nerve. I had an extensive DVT from foot to Groin, but only have three areas with non-occlusive chronic clots. Behind the knee, there is blood flow, but it is very hard for them to see it. So, maybe it is pretty closed off. Without pain meds I have a horrible ripping pain there after any exertion. Even without exertion, by the end of the day, even with legs elevated the pain can become intense enough to keep me awake all night. I have detoxed from pain meds many times and on day 7 to day 10, the pain gets bad from just walking around and I cannot sleep. I had an ultrasound in the bad leg back in 2014. My original clots hit in September of 2011. I think they might send me for another ultrasound. But the extent of my chronic clots is nothing like yours, but it causes immense pain. I have also had vicious dog attack on this leg that caused some damage along with another accident that left me limping for a few weeks a long time ago. Maybe the multiple hits to the same area has had an effect. I can't even walk with the thigh high socks. They hurt so bad I can not walk. The 20/30 mmhg knee high sometimes helps, but more than often hurts too bad. 

`I wonder if you need a custom stocking. Your leg could be non-standard `in dimension. Mine was and I couldn't use an off the shelf for awhile. Part of it is my height. They have tall sizes now. If I get any pain it's in my feet is the stocking is too tight in the foot. All I can say is that when the stocking is fresh and fits right, I can feel a difference in endurance and confidence. It feels better. The other thing is pain tolerance. Mine might be higher. I had laminectomy and fusion L4-5 with hardware last fall and I only had oxy 2x when I got home and went on Tylenol after that for 3 weeks. Funny thing is that the GI issues I've been having bother me more than anything else pain wise. I'm just miserable most of the time. 

46 minutes ago, blizzard2014 said:

I only get swelling if I stand or walk for more than 5 hours straight, sometimes it takes a little bit longer. My leg hurts so bad I cannot even tolerate a regular sock on the bad leg. I have to cut the tops off my socks for my right leg and they barely go up to the beginning of the ankle very loosely. Forget about the 30-40, no way, pure torture. The 20/30 ones I used to use for two years after the clots and they really helped but then the leg pain forced me to stop wearing them. I still have three areas in calf and also behind knee with chronic clots and that is where all of my pain comes from. Will be seeing a vascular doc this coming week and see what happens. Most just say there is nothing they can do. 

I had a ultrasound of my legs yesterday. The only comment she made was that the clots were extensive, yet I guess the veins adapted. I've always used 30-40 stocking from the beginning though. If fact, my leg feels better with them on, the knee highs. The thigh highs don't have the same compression. All that said, the tighter stockings have had negative effects too. Losing weight helped with that and I prefer open toe. The thigh highs aren't. I've been doing it for 25+ years, so it's second nature. 

50 minutes ago, Derek1987 said:

I'm still waiting for my long term disability to be approved through my now ex employer. They called me today and asked for an extension. They are going to have a meeting with a nurse and vocational expert I think he said to determine if i can work. They already have the evidence they need to show I'm screwed up. Now I gotta wait up to 30 more days for a decision. 

I love how they work. When I was on short term disability they told me someone with my condition should be healed by now and that since my specialist is a nurse practitioner, she is not credible enough. I was referred to her by a cardiologist. After threatening legal action, they approved me. But now a nurse can determine if I'm eligible for long term disability. These past few months have been h***. If they don't approve me, I'm screwed. 

Did you question them on that? I know that I pay for disability, one before taxes and one after tax. The short term is after, so it's tax free when collecting, but only good for 6 months I think. The long term is through my state pension, which is taken out before tax. For short term, they just need a form from a doctor. Long term I have to see their doctor too. 

Spinach is a good source and maybe almonds? There are also magnesium citrate capsules, but they will loses things up. They will also make one sleepy. Best taken before bed. 

No vacation days, no travel budget and I don't know how I'd do on a trip nowadays. 

57 minutes ago, potsiebarbie said:

Do you guys think pots can drain/use up your magnesium? Anybody have any problems/experience/thoughts on the matter? 

Could happen if your diet is off and/or you're urinating a lot. 

34 minutes ago, Eraena said:

 

There are 30-40 thigh high and full on hose too. You may need custom if the fit isn't standard. I had that issue for awhile. 

4 hours ago, Pistol said:

I changed to 6 small meals a day rather than 3 big ones. I avoid high acid foods ( like citrus and tomatoes, but I draw the line at anything Italian! Vinegar is also a big one!!!! No salad dressings!!!! ), only eat small amounts of fresh fruit and no fresh veggies, only cooked or steamed. A nutritionist told me to also drink the water the veggies were cooked in to get the vitamins in that. I avoid sugar and try to eat more protein than carbs. I do not eat after 7 pm. Since those changes my GI symptoms have greatly improved. .bloating and diarrhea have stopped and nausea is essentially gone. My repeat EGD was NORMAL!

ok. Thanks for the tips. Before this, I was doing Keto. I have a hard time with Keto now, even though I did it for 16 months. I used to eat a lot of fresh greens and use vinegar and tomatoes. No fruit though.  I have been eating 3-4 meals a day for about 2400 calories, which for me is maintenance. My weight has stabilized. If I don't eat that many calories, I start to drop weight. I've tried to add more salt, but I've had mixed results. In some ways it helps, but I get other issues. Normally my sodium intake before this would average about 3500, now I am at 4700. I've gone as high as 8000, and that wasn't good. Seems like my standing HR gets a little better, but I retain some water and I still get some dizziness and still GI issues. I also feel a little funky in some ways, different than pots. I think the extra sodium is hard on the kidneys. I notice I've been urinating more too. 

2 hours ago, blizzard2014 said:

It really makes me mad that we have to use these kinds of antics in order to obtain benefits. I have by far the most issues from the leg I had a DVT in. Pain that just tears my soul apart. I took on an extra job last week, just sat in my car for an hour and worked 1 extra hour, of which I will be working 1 extra hour a week now and it sent me into a three day pain  flare and full body flare. I again felt like I did when my kidney function was down in the low 30's. I had to leave the harder Monday job an hour early and pop two pain pills within 2 hours just to remain standing and complete the work. Weather was warmer and I got dizzy and had to sit down too. I might have kissed the pavement. Yet despite all this, they say my condition is not bad enough to qualify for benefits. I have the bad leg, but since it does not stay swollen or have open wounds from poor circulation, they discredit the pain. I've been suicidal for months and slipped into a bad week of suicidal ideation again because of the realization that taking on an extra job assignment is causing me so much distress. I had a blow out at the Pharmacy because they are playing games with my pain meds again. All this just made me think of living another 30 years fighting with doc's and pharmacies before I finally bite the big one. I don't know if  I have it in me. Moms again tells me I have an easy life because I only work part time and don't have any worries. I snapped and broke something in the house. No normal person/disability claims examiner/disability judge will ever freakin understand how much d*** stress we go through just trying to hang on to some semblance of life. Why would any one fake this s***. So, I might have to get some suicide attempts documented in my medical records before they give me the disability benefits I should already have. I make less money working part time. But that is the system. You get a nice judge who awards everyone, you get it. You get the judge I had with only a 30 percent award rate and you are denied. It's a stupid system. Put me on a lie detector and I will answer all questions and that needle will not jump when I tell them how bad it is. But that would be too easy a solution. The government never makes it easy.  Sorry for the rant. 

Have you gone to a vascular doctor for the leg? I had 3 clots in my right leg since 1993. I get swelling. Just had a follow up with a vascular doc. First one in 20 years. Clots are still there. I'd been wearing knee high compression stockings since the beginning, 30-40mm pressure. Now with POTS, I wear thigh high 20-30 on both legs. Losing weight brought the swelling down a bit. Lost 3" in circumference of my calf  losing 170lbs. 

4 hours ago, Pistol said:

OI ( orthostatic intolerance ) is actually a symptom. It happens with POTS, NCS and OH ( orthostatic hypotension ). It means that your body is unable to compensate for the changes in the upright position and causes dizziness, presyncope and syncope, cold hands and feet, tachycardia with or without BP changes etc. So OI is a catch-all description for these symptoms ( so is the term POTS BTW )

And that's where I am at. Next step, is the why?

2 hours ago, Derek1987 said:

I hate this world.

A small percentage of people make things bad. I hate aholes that make life miserable/worse for others. 

2 hours ago, toomanyproblems said:

Yes. Like a Charlie horse that doesn't go away quickly. Very painful.

If it's like a charley horse, I wonder if it's a magnesium/potassium problem. 

32 minutes ago, potsiebarbie said:

Does anybody get muscle spasms in their arms? Not twitches, but hard painful tense spasms/contractions. 

Sounds neurological. Have you had neck issues at all?