JimL

19 hours ago, WinterSown said:

The management is towards lessening the symptoms. One of the biggest assists for me come from eating a healthy diet and focusing on foods that are rich in electrolytes. Walking is a great exercise that will help with elimination. In the beginning of my symptoms I lost 60 pounds without trying and I needed surgery to close a fissure. Ugh.I  suggest that if you have any problems with your digestion or passage that you do see a gastro before you need to see a colorectal surgeon. Once we realized how dysautonomia was effecting my digestion I was able to make some changes and start improving. My cardiologist, EP and neuro do all help me with these symptoms, and all the rest of them too. This is a treatable condition--it can take a little time to learn how to limit its effects but that will happen. 

 

I asked this in another thread of someone else,  so forgive me. What changes in your diet did you make? My emination has slowed and more effort. I've tried more fiber and it doesn't always make things better. It's like I can't find food that seems to make a difference. I lost a lot of weight before POTS, down 170ish now. My gastro wants to do an EGD and colonoscopy, but I have cervical fusion next week and I can't or shouldn't be knocked out within 30 days of the surgery. So I have to wait. Last night I woke up with abdomen pain on both sides. 

32 minutes ago, Pistol said:

Several years ago my dysautonomia caused me severe GI issues, including diarrhea, right upper abdominal pain and GERD,. I saw a surgeon who did an EGD ( Barrett's esophagitis and duodenitis , HIDA scan ( normal ), gastric emptying study ( normal ) She suggested my GB be removed. My PCP and my insurance both said no b/c the evidence apparently showed that GB removal does not improve diarrhea but actually can CAUSE it. So - years later I still have my GB but my GI issues have improved greatly once POTS was controlled. So - this may not be the same situation for you but in my case I do not believe that GB removal would have improved my symptoms. A careful balance of proper medications and lifestyle and diet changes improved my GI symptoms ( and POTS symptoms as well ). However - if your tests came back indicating GB disease and your physician recommends GB removal I would consider it. 

I have GI symptoms, but slower emination and constipation. What diet changes did you make? I've tried more fiber and sometimes that can make it worse. Used to love greek salads, now they bother me. Woke up last night with pain on both side of my abdomen. 

44 minutes ago, Pistol said:

Orthostatic hypotension IS a form of dysautonomia. The TTT should show that, your BP would drop, usually along with an increase in HR. If you have presyncope you might have NCS - you can have a milder form that does not lead to actual syncope. 

I thought OI is another word for POTS. When my cardiologist said OI, I said is that POTS and he said yes. The question I have is, why?

47 minutes ago, WinterSown said:

I'm sorry you are feeling these symptoms. There is no pass or fail on the TTT. It just records reactions. These numbers and your history will help build a diagnosis. I never fainted but I was still diagnosed. There are many forms of dysautonomia. My numbers are unstable and I sometimes swing into POTS but generally OI and NCS are my biggies. My EP calls it my CardioNeuroVasoVagally thing. It took some tweaking with the meds, learning to avoid triggers, eating right and a little exercise every day. It doesn't happen over night but you will get better.

 

I was sent to an EP and he said something similar, but that he couldn't really help...So I got an appointment with a neurologist that specializes in POTS/dysautonomia. That said, the tilt test is to record what happens when the change one's position from horizontal to near vertical. Passing out on the TTT isn't fun. 

6 hours ago, Derek1987 said:

Before her problems started obviously. Crazy how things can change in an instant.

Things can change quickly. Last May I was on top of the world and it's turned to manure since. It sucks adjusting to the new normal. 

It sounds like rejection of claims at SSDI is proforma unless it's terminal. That's a h*** of a way to evaluate. 

3 hours ago, bombsh3ll said:

Wow yes a lot of women report onset after childbirth - I'd assumed that could be due to blood loss or hormonal shifts & not made any connection to my own case as I never got it after giving birth, but what the forceful straining is implicated in some way as the common denominator?

It would be really interesting to break down whether postpartum onset cases had laboured naturally (even if like you they ultimately had a section) vs just had a section without going into labour. I may start a poll on that. 

Have you ever been evaluated for a spinal CSF leak? I just had an MRI with contrast last week to check for this, as CSF leaks can also be triggered by forceful straining especially in people with EDS like I have, and can produce POTS symptoms in particular the splitting headaches when upright that go away lying down. 

B xxx

I had L4-5 laminectomy and fusion last fall where they said they found a CSF leak from a bone spur. I have to wonder if it was iatrogenic. Anyway, he stitched it and used a blood patch, but I had one of those whopper headaches the day after the surgery. I haven't had that since, but I devoped POTS 2 months later. 

3 hours ago, bombsh3ll said:

I totally agree. I hope I was never the kind of doctor we're all too familiar with (I don't think I was) & I wish I was still able to work. I was only allocated 10 mins for each patient though so at 6 minutes when they're still telling you what they had for breakfast...😉

 

All the best for your surgery! You never know, some people have improved from POTS after cervical fusion. I hope it goes well for you! Make sure you discuss your POTS with the anaesthetist beforehand so they can be aware that your BP and HR may be more labile, and that you are likely to require more IV fluids than the non-POTS patient to keep things stable.

B x

I have to wonder what the consequences are when metrics and money come before patients/customers? 

I will tell the anaesthetist for sure. I have my pre-op check up today as well as a pre-surgery consult with the surgeon. I've just felt so crummy lately. It's a travail just going on doctors visits. 

32 minutes ago, Derek1987 said:

Can you give me an example of a condition that you put that social security deemed as a disability? I'm really lost now lol. I don't have an underlying condition found of why my body does those things listed. At least yet. I thought autonomic neuropathy dysfunction would be a condition. 

Did a doctor give you a diagnosis? 

https://www.disability-benefits-help.org/disabling-conditions/neurological-disorders

https://www.disabilitysecrets.com/topics/neurological-problems

I can't find anything specific for POTS, my guess is that a doctor would have to tell you the underlying condition and then that would have to be acceptable to SS. 

https://www.disabilitysecrets.com/what-conditions-qualify.html

Seems there is a blue book. You may want to find an attorney that does that kind of law that will work on contingency. 

1 hour ago, bombsh3ll said:

Are you still on opioid painkillers that are affecting things? It could also be that you're less mobile due to POTS which doesn't help the bowels.

When I first got POTS my GI system seemed to get much worse at the same time, I was worried I had gastroparesis. However I have since come to the conclusion that for me the nausea is related to chronic cerebral hypoperfusion/presyncope - nausea is a common symptom of people about to faint -  & the slowed transit & hard stools due to immobility and dehydration due to polyuria.

At least with the bowel side of things unlike the orthostatic issues there are a range of effective medications that can help. Do you take anything currently?

B x

I had oxy 2x when I got home and for 3 weeks after just tylenol. I dont take anything for pain now or since. The only meds I am on are synthroid, metoprolol, lisinopril, esomeprosole and sucralfate. I take a multivitamin, vitamin C and D daily. That's it. I did have an issue from the anaestesia in that it slowed my bowels down. They were giving me pill laxitives which were doing nothing or next to nothing. I was really worried because I didn't go in 4 days. I told them to give me magnesium citrate liquid and that did it. Should have done that from the start. They don't listen to patients. Thats the frustration I've come to have most with the medical profession in the last year. Dr William Osler who is considered the father of modern medicine said that if you listen to the patient, they will give you the diagnosis. It's lost on medical professionals today. That said, I haven't been to a POTS specialist yet, I am scheduled for May 21. That's the earliest I could schedule and next week I have more surgery, more cervical fusion. When they did my lower spine, they used Ketamine in addition to the other stuff. I have to wonder if that did something. I had a weird reaction after the surgery, like hallucinating. Never had that before or since. 

10 hours ago, bombsh3ll said:

Bliss! I take movicol, magnesium citrate, bisacodyl and glycerine suppositories as needed. The latter are little miracle workers. My son had to get one yesterday & he was a different child afterwards 😊. I have EDS & I had bowel probs my whole life though long before POTS. 

B x

After my spine surgery last October my bowels seemed to slow down a lot and never got better. 

1 minute ago, bombsh3ll said:

A normal BM is something to be celebrated for sure! 

B xxx

What's that like? My GI has slowed down and takes more effort to get out even if it doesn't look like it should. 

I am waiting for it to warm up a bit so I can use the pool. Another month or so and I will. Swim on my back for an hour a day. 

1 hour ago, nik1980 said:

Thank you all for your kind responses.  It is comforting to have people who actually understand what the h*** I am going through.

It makes a difference to find people that understand. I found a local FB group as well. Maybe you can check that out. Now if only PCPs would get it. The truth is we are where CFS and FM were 25 years ago. Doctors have a habit of putting it in our head if they can't figure it out. 

4 hours ago, StayAtHomeMom said:

Mine started after a brief run. Haven't felt right since. I suspect I have had it longer though. And my 16 year old was just diagnosised as well so that helps support my theory. I had assumed I felt the way I did because it was a normal response to smoking (started when I was 15). High HR, occasional heart beat skips, heart palpitations (didn't know that was what I was feeling), and exercise intolerance. Even the lightheadness upon standing. It was liveable. Never thought anything of it until it got bad, and then the dizziness and breathing issues started. That was all 3 1/2 years ago. Just turned 30. 

I think for some people surgery can trigger it due to laying down so much, or depending on the surgery, making the body mad and malfunction. Finding an underlying cause can help with piece of mind and treatment. But most people don't find it. 

The interesting thing is that after my back surgery, I was up and when I got home, I got up every 1-2 hours to walk. By the time I went back to work I was up to 2.6 miles total a day and two weeks after being back to work it started. The only other thing that comes to mind is that I had a brain MRI with contrast. Then again, the S Show started before that. The only things I can think of before the gastro issues which started it all was that I went to florida a few weeks before, I had undercooked fish a week before and I had started running on a treadmill. I also did some construction in the house redoing a shower and I had to rip out termite damage and there was mold too. I sprayed everything down with bleach though. Nothing else sticks out. I wish I had my old life back. 

There are many factors that can cause POTS and it could be your symptoms are consistent with one of those underlying causes. There are several autoimmune diseases that can cause POTS. What does your doctor say? As far as the tilt table, did they tell you the results? I have a lot of the same symptoms, GI, sometime palpitations, neuropathy, headaches and diplopia or double vision, high heart rate standing, but not doing much, goes back to normal if I lay down. I also get patulous eustachian tube on the left side and have joint pain in wrists and pain/fatigue in arms. Finding a doctor that gets it is key. 

You can check out here: http://www.dysautonomiainternational.org/page.php?ID=30

and here: http://www.dysautonomiainternational.org/page.php?ID=150

3 hours ago, FileTrekker said:

Never heard of that.

Did it work for you?

It helps people with PTSD and trauma. I did it before I had POTS. I think it could help you. Some therapist's that do CBT do EMDR. If your therapist is in the Albert Ellis school, they know what it is. 

1 hour ago, FileTrekker said:

I am in the middle of it currently.

Cool. Does the therapist do EMDR? 

1 hour ago, Lavender90 said:

hi me again just thought I post this …. I been looking see if anyone else got sick after a operation? mine started dam smack in middle of c section six years ago after my little girl was born I had what they  called a heart murmur couldn't turn to the left felt nauseated dizzy I lost a lot blood tmi it was on my partners feet he was at my head 😲this didn't happen with my first csection I was awake for both they clean me up moved me a lot I was under the impression was meant not move u after spinal block ? all my problem's with my bp pressure my heartrate my extreme  weakness started after this 22oct 2012 I lost a lot my freedom independent  I cant go anywhere alone I struggle wash my face etc most days let alone look after my children as I should without help my mum and husband does anyone think this caused my pots? or is it me just being  over thinking …. am in uk 

I had laminectomy and fusion L4-5 2 months prior to this. Not sure if it's related. I also had GI issues and came down with diplopia before the operation. I think something is going on with my body that isn't right. 

5 hours ago, FileTrekker said:

I feel like this every day at some point or another. Or all of it.

I think it is Anxiety in my case as my heart is constantly flip flopping around and bothering me.

Have you tried cognitive behavioral therapy?

When I did the TTT I had it bad. I could feel the syncope coming and then I was out. I try to limit my being up no more than 30 minutes at a time and pay attention to the signs. When the HR gets high, I get antsy/dread.  

5 hours ago, Pistol said:

@JimL - cold hands and feet usually point to constricted blood vessels rather than dilated blood vessels. Blood pooling on the other hand is caused by excessive dilation of the blood vessels. Both mechanisms can cause symptoms of orthostatic intolerance or POTS. This can often be the determining factor in suspecting hyperadrenergic POTS vs other types of POTS. 

Ok. My PCP sent me to a vascular guy who is doing the whole workup. I had a duplex ultrasound of my abdominal aorta and carotids this week and next week I have bilateral venous LE and IVC filter check. The week after temporal arteries. He noticed my feet were cold and that I didn't have a strong pulse in my feet. I don't know if that's normal for POTS. Unfortunately, my appointment with the POTS neurologist isn't for a couple months. Just trying to learn how to cope with this. 

Metoprolol will lower heart rate and it is a beta blocker. 38 is way low. 

1 hour ago, Lily said:

You and I are in the same boat: relatively mild symptoms that worse off people might be glad to experience.  As I understand, the heart beats faster because otherwise the blood wouldn't get around well enough.  Here is an example:  perhaps your veins are too stretchy, allowing blood to pool in your feet instead of circulating.  Your body increases release of norepinepherine in an attempt to get the veins to constrict.  The NE also raises your heart rate.  Your end result is an elevated heart rate.  The fatigue comes from all the extra work your heart is doing.  This is just one example.  I am most familiar with this possible mechanism, because I think this is what is happening with me.  There might be other mechanisms and processes that can lead to the same end result.  The severity of symptoms depends on exactly what in your body is malfunctioning.  There are several different malfunctions that can lead to the same end result, so it is all highly individual.

I've read that in some cases the nervous system doesn't make the veins contract to raise BP and the heart beats faster to compensate. Maybe that's an oversimplification. I know my feet have been colder and sometimes my hands as well. 

2 hours ago, StayAtHomeMom said:

2 months for a new patient appointment isn't too bad. Due to cancelations it took almost 4 months for my son to get a new patient appointment. Even when I scheduled it, it was 2 months out. My specialist is alway super busy and behind. He has a nurse practitioner now, so that has been helping out a lot.

It is definitely worth the wait. When you have a doctor that doesn't look at you like you are crazy, it is the most wonderful feeling in the world. 

So far, I've gotten the crazy looks or at best, go through the motions of whatever tests they happen to do. One problem I see with specialists is that they don't take the whole body into consideration. If you go to a GI guy, you have a GI problem causing it, Cardiologist, a heart problems, etc. A good internist should be able to put the pieces together, but with 10-15 minutes per patient, it doesn't lend itself to deep discovery.