Where to go next

[RobinB]

I have been sick for years and have the POTS diagnosis but that's all.  I have many symptoms that I don't believe are technically related to POTS and I have been searching for my cause for years.  I'm at the point now where I don't know what to do next.  I seem to be getting worse and spend my days just laying around.  Everything is a struggle.  My PCP has literally thrown her hands up and told me there is nothing she can do for me.  She won't refer me to any specialists and I cannot self refer due to having an HMO.  I do plan to switch to a PPO at the end of this year so I can see the specialists I want to see.  

I have chronic diarrhea (sorry TMI), frequent urination (at least once every 30 minutes), tingling and numbness in my feet, hands, legs, arms, and face.  I have loss of feeling on my right side and seem less coordinated than the left side. I feel completely drained 24/7.  I'm shaky.  All blood tests come back normal for the most part.  My fasting blood sugar is a bit high and I have low HDL cholesterol, as well as low lymphocytes.   The problem is I cannot seem to get care no matter how much I plead.  I'm told I just have to live with it.  I am 100% certain that something is causing my POTS and I do not want to rest until I find it.  This stupid disorder has stolen 10 years of my life and hindered my relationships with my family and friends and I cannot take it anymore.  

My PCP says I have had sufficient testing, but when I look at the list of causes for POTS I haven't been tested for even half of them.  So how can they be sure they aren't missing something?  I feel like I will die every single day.  I don't even know how I'm still here.  

My initial theory was that I really was just deconditioned.  I was a very active child and teen and was waitressing from the age of 16 to 23 when I gave birth to my son so I was on my feet for 10 hours a day minimum (even while pregnant).  As soon as I had my son I was laying around all day as I was tired and off work.  Several months later is when I started being symptomatic.  So I wasn't on bedrest but my activity level was down to almost nothing.  It has just continued to get worse.  Could going from being that active to extremely sedentary be enough to trigger POTS?  And the fact that I have never gone back to that much activity be keeping me sick?  I know it's a long shot and my other symptoms would point to that not being likely.  I had a better period last summer where I was actually able to exercise upright and even did a warrior dash.  It knocked me down for days and was extremely difficult.  That period of feeling maybe 30% better only lasted less than 6 months.

What would you guys do?  Should I pursue the cause?  Or should I just accept that I will be like this for the rest of my life and resort to living a life of doing absolutely nothing but being a burden?  The only tests I have coming up are an echocardiogram (have had several) and an EMG due to the issues with the right side of my body and a recent MRI showing nerve compression (neurologist says the neck and spine issues are not the cause of my POTS).  Up until now I have been pushing through symptoms and trying to ignore it.  That hasn't proven effective.  I am rapidly becoming deconditioned even more now since I am home due to covid, which is making my life even more difficult.  I had planned to start forcing myself to get up again.  Like if I can get up for even a few minutes every hour maybe I can retrain myself to be upright.  I do ride my recumbent bike (not pushing hard at all) for about 20 minutes a day broken into 5 minute chunks.  

Any advice is welcome.  I have gotten so tired of trying to advocate for myself and getting nowhere.  I have looked into functional medicine.  Spent $300 for a consultation only to find out that it would cost me several thousand more to get the tests done that they want to do.  I cannot afford that.  This illness has already taken all my money.  I should also note that my entire family is healthy, no issues like this or anything else really.  So whatever it is I do not believe it's genetic in nature.  At the moment I feel completely overwhelmed with all the information I am finding online and really not sure where to go from here.

I know there are many others who are worse off then me, but this is my life and it's unbearable.  I'm sorry for ranting I just want some help and I'm desperate.  I pray to God every night to help me figure this out.  

[JaneEyre9]

Just want to offer some support and encouragement.  Like you, I was very active and then POTS hit me like a train. I was completely incapacitated and stuck in bed at home. This is not due to laziness. It is (from my understanding of current research) an autoimmune disorder that affects circulation as well as other systems of the body. Childbirth is a common trigger for POTS symptoms. 

What helped me to recover my health back was to drastically change my diet to be anti-inflammatory and to take vitamins and supplements to heal from intestinal permeability (aka leaky gut syndrome). Your diarrhea and frequent urination are very familiar to me. I'd encourage you to see if you can talk with the functional medicine specialist and see if they could recommend some first steps to you without doing such extensive testing. My medical history was enough for me to be diagnosed when I saw Integrative Medicine at the Cleveland Clinic, and her recommendations started me down the right path. 

For exercise, the recumbent bike is great for POTS. Other ideas that help the nervous system are gentle yoga and tai chi. 

Wishing you the best - I empathize with how discouraged you must feel!

[RobinB]

43 minutes ago, JaneEyre9 said:

Just want to offer some support and encouragement.  Like you, I was very active and then POTS hit me like a train. I was completely incapacitated and stuck in bed at home. This is not due to laziness. It is (from my understanding of current research) an autoimmune disorder that affects circulation as well as other systems of the body. Childbirth is a common trigger for POTS symptoms. 

What helped me to recover my health back was to drastically change my diet to be anti-inflammatory and to take vitamins and supplements to heal from intestinal permeability (aka leaky gut syndrome). Your diarrhea and frequent urination are very familiar to me. I'd encourage you to see if you can talk with the functional medicine specialist and see if they could recommend some first steps to you without doing such extensive testing. My medical history was enough for me to be diagnosed when I saw Integrative Medicine at the Cleveland Clinic, and her recommendations started me down the right path. 

For exercise, the recumbent bike is great for POTS. Other ideas that help the nervous system are gentle yoga and tai chi. 

Wishing you the best - I empathize with how discouraged you must feel!

Thanks for responding!  I'm glad to know you have recovered some.  I had a very stressful pregnancy and horrible delivery.  I had to be put on oxygen and was throwing up non stop for hours after he was born.  I haven't felt right since.  I felt better laying around so I kept just laying around for years.

I don't expect to ever be normal again, but I would like to get a to a point where I am not afraid to leave my house due to horrible symptoms.  I have pretty bad gastritis as well which I forgot to mention and I have been reading lately about anti-inflammatory and low histamine diets.  I would definitely try one, it's just that my capacity to cook for myself is currently very limited due to symptoms.  My go to is fruit, quick snacks like crackers or yogurt and whatever I can microwave quickly.  I can actually ride my bike for even longer it's just that once I'm upright my heart rate shoots up and stays there until I'm back down.  It's the extreme dizziness and floating feeling that I can't handle. I'm very off balance.  

Can I ask how much you have recovered from your POTS symptoms due to your diet changes?  The bathroom issues are the least of my worries, however if they are connected I'm all ears. If I could have some hope that it would improve me I would be willing to try and push through symptoms to get the foods I need to eat and cook them etc.  Can you tell me more about what vitamins and supplements you take and what you eat?  If and when I am able to switch my insurance I plan to see an endocrinologist and would love to get to Cleveland Clinic.  Fingers crossed.  I tried to get into Mayo but they won't take me.

[Pistol]

@RobinB - I had several thoughts while reading your unfortunate story. 

- tingling and numbness, loss of feeling right side could all be unrelated to POTS and from nerve compression ( as per MRI ). 

- chronic diarrhea, frequent urination, extreme fatigue: all typical for dysautonomia. 

4 hours ago, RobinB said:

As soon as I had my son I was laying around all day as I was tired and off work. 

This is what happened to me. I was extremely healthy and active up until I had my daughter - that's when many of my symptoms ( particularly the extreme fatigue ) started, but I continued working 12 hour shifts in hospital until everything collapsed on me ( literally ) 3 years later. I ended having to stop working permanently. I am diagnosed with HPOTS and I KNOW that it was triggered by childbirth. 

 

28 minutes ago, RobinB said:

I had a very stressful pregnancy and horrible delivery.  I had to be put on oxygen and was throwing up non stop for hours after he was born.  I haven't felt right since.  I felt better laying around so I kept just laying around for years.

This sounds like a possible trigger for POTS. Did you have an epidural by any chance? Have they ever tested you for a CSF leak? It can be a cause for some of your symptoms, including your balance issue. I know of people on this forum that were diagnosed with POTS and ended up having a CSF leak. Maybe worth checking into? 

https://my.clevelandclinic.org/health/diseases/16854-cerebrospinal-fluid-csf-leak

 

[RobinB]

@Pistol yes I did have an epidural. Hmmm I have seen some posts about CSF leaks on here, but I don’t have the classic headache. I do get headaches but not necessarily orthostatic headaches. I do have tinnitus, vision issues and sensory issues that come and go as well.

Thanks for the suggestion. I assume I can reach out to Cleveland Clinic to inquire about this? I’ve had numerous MRIs but nobody has mentioned any leak.

[p8d]

A couple of things: my dysautonomia neurologist told me that they see onset in women more frequently around menarche, pregnancy or birth and menopause and she’s been researching/treating for 20+ years, including at Mayo. I have discovered mine Is autoimmune and it hit 2 years after menopause so I was still in that age range. I was repeatedly tested for autoimmune diseases and on the third test in 18 months after sudden, post viral onset one came back positive. Treating that has helped but is no magic bullet (I take plaquenill and now SCIG). I also sent my blood to Celltrend in Germany for testing for autoantibodies and the alpha a-1 came back positive too. I am still housebound but if I limit my activity to what I know I can handle I don’t feel like death every minute of every day.

Exercise! Even when you don’t want to. I weighed 85# and was completely deconditioned a couple of months after diagnosis with symptoms similar to what you describe. I started exercising (at physical therapy in a walking treadmill)  at that point and now do aerobics (stationary bike, rowing machine and treadmill) 20-30 minutes 3-4 times/week with PT supervised strength training most other days. It definitely helps. Start and increase *extremely* slowly. I still only increase by 30 seconds a week and have to have 2 days off after aerobic or I really suffer with fatigue. I do strength training the other days but if my body is really fatigued I just take a rest day but never more than one. I refuse to get so deconditioned again. Strong muscles, especially in the legs help get blood back up to the heart and brain. Does it stop tachycardia or palpitations or brain fog? Absolutely not but it prevents me from getting so very, very ill and every little bit helps.
 

If your PCP won’t refer you to a dys specialist find another one that will. I found a great PCP on the Dysautonomia International state web group. There a WONDERFUL neurologist in Chicago, Dr B listed here https://www.dinet.org/physicians/ who specializes in dys and will definitely help you. Maybe call for an appointment now for when you get PPO insurance, most specialists book 6-12 months out. If you can travel to southern Wisconsin let me know and I will give you my Drs names.

I had very similar digestive issues and was even on TPN for 6 weeks because I had such pain when eating. I went gluten free and supplemented meals with pea protein shakes to add nutrition and calories. I now am eating pretty much everything except nightshades and dairy. It took a couple of years to add gluten.
 

Yes, my life will never be what it was but when I couldn’t die, and I really wanted to, I vowed if exercise and perseverance were what I needed to do, be it testing/exercise/diet etc I would do it. I am very stubborn which helps! I still struggle with stuff every single day but I weigh 120 pounds, have fantastic Drs and when I live within my (very severe) limits I am generally happy. 

[RobinB]

@p8d thank you for the suggestions. I actually saw Dr. B 4 years ago and he was the one who diagnosed me. Since then I’ve changed insurance and my PCP said all the testing they could do has been done. She won’t refer me. 
 

I could see about going back to him in about 6 months and see if anything else has come up. You’re right, if we aren’t going die, then we need to try to live. It’s just all so depressing. But I will not give up and I will not stop looking for answers.

[Pistol]

22 minutes ago, RobinB said:

I actually saw Dr. B 4 years ago and he was the one who diagnosed me. Since then I’ve changed insurance and my PCP said all the testing they could do has been done. She won’t refer me. 

@RobinB tell your PCP that testing for a diagnosis is ( obviously ) no longer needed, so the referral to a specialist at this point would be for TREATMENT ( since she apparently gave up on that 😖). Especially since she plainly admitted to have run out of ideas the referral is sorely needed. You might want to tell your HMO that she is refusing treatment and you need a second opinion from a specialist. You can attach one of the articles from our information site that mention all of the different treatments for POTS - if she has not yet tried them all then there are many options available, and a specialist most-likely will know which ones to try. Also - if she has not yet tried IV fluids on you I would demand to give it a shot, it is a shockingly effective treatment for POTS when other things have failed. Many POTS patients use them for flares. They might help you to make it until you are able to see a better informed physician. 

[JaneEyre9]

19 hours ago, RobinB said:

Thanks for responding!  I'm glad to know you have recovered some.  I had a very stressful pregnancy and horrible delivery.  I had to be put on oxygen and was throwing up non stop for hours after he was born.  I haven't felt right since.  I felt better laying around so I kept just laying around for years.

I don't expect to ever be normal again, but I would like to get a to a point where I am not afraid to leave my house due to horrible symptoms.  I have pretty bad gastritis as well which I forgot to mention and I have been reading lately about anti-inflammatory and low histamine diets.  I would definitely try one, it's just that my capacity to cook for myself is currently very limited due to symptoms.  My go to is fruit, quick snacks like crackers or yogurt and whatever I can microwave quickly.  I can actually ride my bike for even longer it's just that once I'm upright my heart rate shoots up and stays there until I'm back down.  It's the extreme dizziness and floating feeling that I can't handle. I'm very off balance.  

Can I ask how much you have recovered from your POTS symptoms due to your diet changes?  The bathroom issues are the least of my worries, however if they are connected I'm all ears. If I could have some hope that it would improve me I would be willing to try and push through symptoms to get the foods I need to eat and cook them etc.  Can you tell me more about what vitamins and supplements you take and what you eat?  If and when I am able to switch my insurance I plan to see an endocrinologist and would love to get to Cleveland Clinic.  Fingers crossed.  I tried to get into Mayo but they won't take me.

@RobinB I was just like you, reaching for convenient snacks and easy-to-prepare comfort foods. It is so hard to cook anything when you feel that bad. The turning point for me was when I had to cut out processed foods, grains, dairy, and sugar - basically everything I liked to eat! I ate very simply at first - lean protein like turkey or fish or chicken with cooked vegetables. I still limit high sugar fruits and stick to green apples, pears, and berries. I noticed improvement in my dizziness within the first couple weeks. I was also low in vitamin D and needed to supplement that. Some other supplements I found helpful are listed in my signature. L-glutamine, collagen, and the probiotic "paracasei" are all known to help heal the gut lining. Enzymes also help with digestion. 

If you can make some homemade soup (good source of collagen) on a day you feel decent, or if you can get someone to help you, the soup can be frozen in individual containers to heat and eat when you feel unable to cook. It takes some creativity and determination, but healing can happen. After many years stuck in bed at home, I was gradually able to regain function in many areas of life - activities like travel, hiking, cooking, and shopping, etc.

There are many factors a doctor would need to consider to help you find the right diet and supplements for your personal needs, but it is well worth the effort to heal the gut. If your gut is permeable like mine was, foreign proteins and particles can enter your bloodstream and keep your immune system on high alert. By healing the gut, it creates a barrier so your immune system isn't always reacting to these invaders.

[MamaBear3]

On 6/27/2020 at 12:19 PM, RobinB said:

I have been sick for years and have the POTS diagnosis but that's all.  I have many symptoms that I don't believe are technically related to POTS and I have been searching for my cause for years.  I'm at the point now where I don't know what to do next.  I seem to be getting worse and spend my days just laying around.  Everything is a struggle.  My PCP has literally thrown her hands up and told me there is nothing she can do for me.  She won't refer me to any specialists and I cannot self refer due to having an HMO.  I do plan to switch to a PPO at the end of this year so I can see the specialists I want to see.  

I have chronic diarrhea (sorry TMI), frequent urination (at least once every 30 minutes), tingling and numbness in my feet, hands, legs, arms, and face.  I have loss of feeling on my right side and seem less coordinated than the left side. I feel completely drained 24/7.  I'm shaky.  All blood tests come back normal for the most part.  My fasting blood sugar is a bit high and I have low HDL cholesterol, as well as low lymphocytes.   The problem is I cannot seem to get care no matter how much I plead.  I'm told I just have to live with it.  I am 100% certain that something is causing my POTS and I do not want to rest until I find it.  This stupid disorder has stolen 10 years of my life and hindered my relationships with my family and friends and I cannot take it anymore.  

My PCP says I have had sufficient testing, but when I look at the list of causes for POTS I haven't been tested for even half of them.  So how can they be sure they aren't missing something?  I feel like I will die every single day.  I don't even know how I'm still here.  

My initial theory was that I really was just deconditioned.  I was a very active child and teen and was waitressing from the age of 16 to 23 when I gave birth to my son so I was on my feet for 10 hours a day minimum (even while pregnant).  As soon as I had my son I was laying around all day as I was tired and off work.  Several months later is when I started being symptomatic.  So I wasn't on bedrest but my activity level was down to almost nothing.  It has just continued to get worse.  Could going from being that active to extremely sedentary be enough to trigger POTS?  And the fact that I have never gone back to that much activity be keeping me sick?  I know it's a long shot and my other symptoms would point to that not being likely.  I had a better period last summer where I was actually able to exercise upright and even did a warrior dash.  It knocked me down for days and was extremely difficult.  That period of feeling maybe 30% better only lasted less than 6 months.

What would you guys do?  Should I pursue the cause?  Or should I just accept that I will be like this for the rest of my life and resort to living a life of doing absolutely nothing but being a burden?  The only tests I have coming up are an echocardiogram (have had several) and an EMG due to the issues with the right side of my body and a recent MRI showing nerve compression (neurologist says the neck and spine issues are not the cause of my POTS).  Up until now I have been pushing through symptoms and trying to ignore it.  That hasn't proven effective.  I am rapidly becoming deconditioned even more now since I am home due to covid, which is making my life even more difficult.  I had planned to start forcing myself to get up again.  Like if I can get up for even a few minutes every hour maybe I can retrain myself to be upright.  I do ride my recumbent bike (not pushing hard at all) for about 20 minutes a day broken into 5 minute chunks.  

Any advice is welcome.  I have gotten so tired of trying to advocate for myself and getting nowhere.  I have looked into functional medicine.  Spent $300 for a consultation only to find out that it would cost me several thousand more to get the tests done that they want to do.  I cannot afford that.  This illness has already taken all my money.  I should also note that my entire family is healthy, no issues like this or anything else really.  So whatever it is I do not believe it's genetic in nature.  At the moment I feel completely overwhelmed with all the information I am finding online and really not sure where to go from here.

I know there are many others who are worse off then me, but this is my life and it's unbearable.  I'm sorry for ranting I just want some help and I'm desperate.  I pray to God every night to help me figure this out.  

Hey girl, 

Very random, and personal, question.... do you happen to have breast implants?

[RobinB]

No I don’t. Lol. 

[RobinB]

@p8d I’m reading up on the CellTrend test. How did you manage to get those tests done? 
I’m very interested in doing that however I’m not sure how to go about it. Do I ask my doctor? 

[p8d]

I had to have an order from my Dr so the lab would actually draw the blood. Finding a lab was a bit difficult but the local medical college did it and gave me back the tubes for shipping. They even got me a box for shipping it which was way above and beyond. I had to send it FedEx which was a disaster because no other company would send a bodily fluid. There are specific forms that 99% of the employees don’t know about but I have copes if you want them, just PM me. I was missing one of them and my blood got held for 1-2 days up when it arrived in Europe which might have messed the results although the company said it had not. I don’t know if Covid has changed anything about shipping but I wouldn’t be surprised if it has. 

[Patrick]

Look up Cervical Stenosis with Myelopathy.   Myelopathy are symptoms caused by compression of the cervical spinal chord.  A lot of your symptoms (numbness, weakness, tingling, balance, gait issues) are all symptoms of Myelopathy.  I've been searching for years for answers to my problems and think I've finally found the reason.  I think I remember reading a thread on this website about Cervical Stenosis and Pots and have read at least one article linking the two.  I'm having a follow up appointment with my spine surgeon to see if he thinks my dysautonomia problem is related to my spine problem.  It's possible - even though your neurologist says no.  My neurologist didn't make the connection, but she knew enough after looking at the MRI to send me to a spine doctor - who told me I have Myelopathy.  See if you can get a referral from you neurologist.  Spinal chord compression is nothing to be ignored as bad things can happen if you let it get too far advanced.  Good luck.