New here - finding root cause?

[Bluebonnet08]

Hi Everyone,

I am new here, but not new to POTS.   I was healthy until 11 years ago when I got food poisoning, mono, and started a birth control pill all within the same month!  I became very ill with fatigue and developed POTS episodes (labeled then as “panic attacks”).  It took many years before I was properly diagnosed with POTS via a tilt table test. 

Since then I have had many tests looking for a “root cause”.  I’ve been to Sentara in Norfolk and had a skin biopsy to look at the nerve fibers in my legs, they also ran a huge panel of tests (looked for autoimmune, paraneoplastic, organic acids, mitochondrial disease).  Everything came back as normal.  Another specialist has ruled out EDS.  I just can’t seem to find the “root cause”. 

I’m so frustrated, as I’m sure many of you are, because I have been suffering for so long.  I have a toddler and I cannot take care of him without full time help. 

My main symptoms are:  debilitating fatigue, episodes of high HR or low BP (triggered by walking around, heat, stress, etc), sleep disturbance, low stress tolerance, overall muscles achiness, and depression over this situation.   There are many other symptoms, but these are the main ones.  I am also VERY slow to recover from an illness.

I haven’t been able to find a doctor who was willing to sit down with me and really analyze and synthesize my background and information to try to determine root cause.  I have done MANY treatment plans but haven’t been able to find much symptom relief and I have not been able to improve my energy at all.  Right now it hovers around 10% of normal and I have to lie down most of the day.  I’m really struggling because I have no idea what steps I should take next. 

I guess my questions are 1.)  Do you know of any doctor or person that could help with really putting the puzzle pieces together and trying to figure out root cause

2.)  How did you find out your root cause   3.)  Has anyone been able to improve their energy levels at all?

I’m relatively young and this illness has stolen so much of my life.  I just want to believe that moving forward I will be able to get some type of help.  Thank you for reading this and for any advice or insight!

[Bigskyfam]

Welcome!

1. Finding a good primary doc who thinks outside the box and can refer you to a specialist and is willing to communicate with specialist.

2. All speculation after 3 yrs, but I have eds. The year I had my initial pots flare, I had 3 surgeries and hormone trials and flu vaccine( found out I was allergic to eggs)

3. I did have success with cardiac rehab which got me back to work... Was unable to keep up both. Taking at least 2-3 l of h20 per day and cutting out allergy triggers. Salt increase when bp runs low and pacing myself. 

[Jan]

I had sudden onset 20 minutes after a bee sting but was starting to feel ill before that possibly from either a virus or food poisoning. I was also under an incredible amount of stress in my life at the time. 

I have had countless tests and no cause was ever found.  I had to move from finding a cure to figuring out how to cope with POTS. 

My symptoms were very similar to yours. I avoided things that made me feel worse, like walking any distance.  A doctor at the Mayo told me that the body has an incredible ability to adapt. She told me I had to push myself or I would never get better.  She suggested starting with short walks, leg exercises and sitting up in a recliner with my feet up, rather than lying down during the day.  She said I had to retrain my body on how to be upright. 

I went to a swimming pool, went to PT and got some leg exercises I could do while lying down, and bought a recumbent bike.  It took years, and progress was slow but I am now able to go out with friends, drive, shop and take care of myself. I still need tons of sleep, and can't tolerate warm weather, eat lots of salt, stay super hydrated and I take florinef and lorazapam.  I still have some dizzy days but over all life is good. 

The depression that came with being so debilitated was as difficult for me to deal with as the illness. As soon as I started to feel like I was doing better, the depression went away. Try not to lose hope. Focus on trying to do just a little bit more each day.  If you keep a journal you might be able to see progress you won't see daily. 

Good luck, I feel you pain and how overwhelming life can be. I had small kids at the time and my husband left me. The good news is kids grow up and become not just self sufficient, but helpful. 

 

 

 

 

 

 

 

[kalamazoo]

I have a doctor who helps and is open to new information I find, but she's also just a Nurse Practitioner.  Her knowledge is limited, but she's willing to help, more than most doctors I've found. I wouldn't say that I even have a "root cause", I just think my body is a mess. My symptoms were severely aggravated when I was about 17 though and I was bulimic, so I know I worsened my own issues. Prior to that I had issues and my whole life I always got winded very easily and have had a high HR. Autoimmune type disease run in my family and my moms side is pretty unhealthy with cancers and such. I think my mom has symptoms of dysautonomia as well but she doesn't care to get tested. I think some people may have a root cause, but I also think that the body is intricate enough that sometimes thing go wrong without any major cause. And I gave into how much rest I needed. I sleep about 10 hours a night, I don't nap though, that way I can fall asleep later. I NEED at least 10 hours to function, I don't do morning apts or classes and I make sure I have time during the day to sit down and take a moment to relax. I basically have the same story though, I was on Yaz I think it was called, don't know if there was any correlation but my symptoms did get worse around then. I was labeled with panic attacks for years too and would go to the ER several times a month, I finally found a pediatrician who helped me but it still took years to get my actual disagnosis. I think with a disease like POTS we might always be searching for the cause, even now I'm going to UW to their autonomic testing center. Hopefully they can find maybe some kind of trigger, maybe hormonal or something I'm not sure because the entire community seems to have a lot of similar stories but also very different ones as well. 

[RichGotsPots]

Sometimes doctors do not check though enough (meaning they don't run all the proper testing) to make a diagnosis and they that causes us to rule out illnesses as our cause. For example you said," huge panel of tests (looked for autoimmune, paraneoplastic, organic acids, mitochondrial disease)." Which sounds to me like they did blood work/panel because there is a paraneopplastic and autoimmune dysautonomia panel at Mayo Clinic that they would send the "panel" to. The only thing that panel and any other blood work would confirm is Paraneoplastic syndrome. 50% of Autoimmune patients are seronegative for most types of autoimmune illness and the main one that panel looks for is Autoimmune Autonomic Gangliopathy (which is very rare and also 50% are negative with it). So blood work can never rule out autoimmune illness. 

 

That same is true for Mitochondrial Disease. There are over 50 types of Mitochondrial diseases and only a few rare ones can be picked up with different special blood work that only a Mitochondrial doctor would know how to order. All the other 40+ types use blood tests but only as part of the whole picture. Mitochondrial disease can only be diagnosed with a muscle biopsy or whole exome/genome genetic testing (cost $20,000) and only a Mitochondrial doctor would be able to get it approved. A routine muscle biopsy would look for Mitochondrial disease. From what you described a few thing match up to Mitochondrial disease such as slow recovery after getting sick from something. About 80% of Mitochondrial patients have dysautonomia, but a very low % of dysautonomia patient have Mitochondrial disease. Also a few adult Mitochondrial patients have both autoimmune disease and secondary Mitochondrial disease. There is no treatment as of yet for Mitochondrial disease but a few are in the pipeline doing trials now. But it's crucial to get the diagnosis more for avoiding certain meds and things that could make it worse like anesthesia, certain antibiotics, Ringers Lactate, etc... if I were you I would contact the United Mitochondrial Foundation and ask for a referral to a specialist near you. And I would see a top Rheumatologist at a teaching hospital to test you further for Autoimmune. Good luck

[Bluebonnet08]

Wow, thank you all so much for the support and replies!  I really appreciate you taking the time to respond.  I'm sorry to hear others have gone through this, but also encouraged to hear that some are feeling better!

Kalamazoo- I'm sorry that Yaz seemed to cause this problem for you.  I also believe it was the major factor in my illness.  I've heard of many women getting very ill from Yaz.

RichGotPots- Thank you so much for all of your suggestions!  I am definitely going to look into those suggestions. 

It means so much to get some insight and support.  I've been trying to figure out my next steps and this has been very helpful!

 

[MonkeyBug]

I had to turn towards homeopathic and functional medicine to get true explanations and doctors who would look deeper than a standard test. Unfortunately medical tests only show results for diseases doctors can prescribe something for. Often issues happen long before they show up on traditional tests. Non-allopathic docs understand this. 

My cause was a brain injury from a fall. However I've learned I had quite the imbalance in my body before the head injury which created the perfect storm. 

Ive greatly improved my energy by altering my diet and taking only natural supplements and herbs to deal with brain fog, palpitations, etc. prescriptions only covered up some symptoms without addressing the true issue at all.  I still have my bad days but they are getting fewer and farther between now that I've maintained a consistent treatment protocol for the last 3 months. 

[yogini]

I think some people find a cause, but many of us don't. I got this following a virus, that's all I know. All of my tests other than the tilt table came back normal.

During the first few months I saw many specialists, went to the Mayo Clinic, etc.  Most doctors don't understand POTS at all, but even the experts can only do so much because the science is still developing.  It is much better now than when I first got sick 10+ years ago, but still developing.  

After I didn't find any clues I shifted my energy to trying different medications and forms of exercise. Many of the treatments are the same regardless of the cause anyway. It took some experimenting and hard work, but I am much better now.  

[Debbie Rose]

Hi Blue,

I think the ruptured dics in my neck back in the late 80's was the initial cause; 10 years later with the fatigue and sleep issues and pain I was labeled with fibromyalgia. I do know that things got extremely bad in 2010 when my job became horribly stressful and menapause kicked in. My doctor initially thought it was MS due to heat intolerance and weakness. I also suffer migraines. But all the NCS symptoms showed up in 2010 and finally diagnosed 2016 with TTT. I can not sit up straight or walk for longer than 20-30 minutes because then the symptoms kick in. I am fortunate my symptoms come on slowly enough to get back to my recliner.

I have learned to be active 20-30 min with then going back to reclining 30 degree to 45 sometimes for anywhere from 10 min to 40 minutes. Then see how I feel to do the same degree of activity or less so. I sleep 10 hours a night. I have a peddler that I use from a reclined chair. I have worked up to 20 minutes 4 out of 7 days if I work hard at the consistency-which I slip off of sometimes. I need to do better with my compression stockings cause they do help. Tommy Copper has some great compression clothes I wear too. Drinking 2-3 liters is hard for me because I had gastric bypass so I have to sip all day but I do eat salt easily now. My depression (which I have had since age 12) became worse and I needed my meds adjusted, and the frustration of this lifestyle definitely contributes to it. I can not work. I have PTSD with Anxiety disorder and any stress kicks my NCS into extreme overdrive.

I hope this helps. Getting into a routine with your toddler-especially naps-may be possible too

Keep us updated

Debbie

[Guest]

I don't know what the root cause of my POTS is.  Symptoms started with gusto when I was in about grade 5-7.  They became completely debilitating during the time I had daily exposure to mold and sewage bacteria at work a few years ago.  I wasn't diagnosed until late this fall (I'm 38).  (before this, like most others, I was told it was anxiety/depression...turns out I don't have either)

 

I was recently also diagnosed with MCAS (Mast Cell Activation Syndrome).  It and POTS are bff's.  Since limiting my histamine exposure, both my MCAS and POTS symptoms have started to improve.  So, I'm not sure of the exact cause, but...early hormones seem to have triggered it, toxin exposure made it worse, and it responds to limiting my histamine exposure...maybe it's tied into MCAS?  I'm not sure.  

 

I would also bet I have mild EDS (Ehlers Danlos Syndrome)...but it's something I'll pursue later on down the road.  EDS can cause POTS...so really, it could be a combo platter of causes?

 

 

[haugr]

I was bedridden for a few months last year when i got hit with hyper pots and I ended up losing my job over it.  I eventually figured out how to treat it to the point where it is now barely affecting me.  I was really lucky that I just happened to pick a doctor that treats dysautonomia, but it took several months of me playing around with different losartan, clonidine, and sodium dosages to get me stable enough where I could go back to work. I am pretty sure that my root cause is an ace2 deficiency.

[MarieR]

I haven't found the "root cause" there is some speculation from a virus I had when I was younger, but they don't really know. 

I am still working out how to help managing my POTS. I did just find a new primary care doctor who seems to really understand this, so I am excited about that. I hope that you can find a doctor you can trust and can help! 

 

[JaneEyre9]

Hi Blue,

This is my first time checking back in here on DINET after being gone for years. I became disabled by POTS in 2005. I too wanted to find a root cause, but I was given only band-aids to try to manage symptoms like florinef, beta blockers, and cardiac rehab. I was completely unable to continue with graduate school or my career and was stuck at home needing a lot of help to just function day to day.

In 2010, I encountered a new way of thinking about diet from Dr. Grubb called Anti-Cancer: A new way of life.  That book was all about reducing inflammation in the body. Later that year, I went to the Cleveland Clinic Center for Integrative Medicine and saw an MD who also talked about reducing inflammation via diet changes and targeting imbalances in digestion (fungal, viral, bacterial). Changing my diet turned my POTS around. I got rid of sugar, processed food, gluten, and actually all grain for quite a while and only ate veggies, high-quality/organic meat and fish, and small amounts of fruit. I also took a natural anti-viral called olive leaf extract and tried to supplement with probiotic foods. These changes to heal my digestion were key for my recovery and allowed me to start VERY gentle exercise - gentle yoga lying down, tai chi, walking small distances.

I have recovered to a great extent and have tons more energy. It used to be that unloading the dishwasher was my big accomplishment in a day. I had to choose during a week if i wanted to go out to see a friend or try to walk on the treadmill, but i couldn't do both. Now, I function quite normally - shopping, doing errands, exercising, driving, working part time, cleaning, and I cook every day to maintain my anti-inflammatory diet. It has been encouraging to feel the gradual progress. I've gone through a lot of trial and error, but I want to tell you that there is hope and there are answers. Integrative and functional medicine doctors can help you get to the root of your issues. They address adrenal function, thyroid, digestive problems, food sensitivities, hormones, and more. Adding in certain liquid or whole-food forms of vitamin D, magnesium (transdermal), B-vitamins, and other vital nutrients like vitamin C and zinc can be so helpful if you haven't been absorbing them well. If you are looking for a big difference without any downside, I would highly recommend avoiding all sugar, processed food, gluten, and dairy. They are some of the most inflammatory foods and are not doing us any favors as we battle auto-immune issues and POTS.

I hope this helps! I have somehow started getting DINET updates in my inbox again recently, so i checked back in here and saw your post. It is hard, but you can get better. There is hope!

[kpflma]

Hi JaneEyre9, I looked up that book and it seems specific to cancer. Does it outline the diet you describe or can you recommend another book that does? I mostly eat this way --I avoid sugar and processed foods. I do eat yogurt however. I want to see if there is anything I can do that will improve upon what I am already doing. So glad to hear you had a positive experience and are feeling better!

K

[kpflma]

Hi Blue, I was interested to read that you and another member mentioned Yaz. I have primary autonomic failure, not POTS, but also, have never figured out a cause. My neurologist tells me it is "bad luck".  My initial symptom was extreme dizziness and then I had extreme bradycardia, my heart rate got very very low, so they implanted a pacemaker (I was only 40). So, I developed sick sinus syndrome, and the doctors think that is due to the dysautonomia --but others have said those are two separate things (which seems strange to me ---how unlikely would that be?). I now use the pacemaker 98% of the time in the atrium and about 40% of the time in the ventricle. Anyway, this all started after I was on some strong hormonal treatments. I have always wondered if that was the trigger/cause. That would be consistent with your experience with Yaz maybe. I am doing much better, and I have tried various approaches --some helped, some didnt, some helped for a while and then didnt. The first thing that helped me was a network chiropractor --much different from a regular chiropractor. I have a science background, so I was very skeptical --but it made a difference! Got me back to work! Acupuncture has helped, but it seems more subtle and doesnt seem to have a lasting effect. Iyengar yoga --big help! Water aerobics and swimming and walking my dog (every day even though it sometimes seems like torture). Meditation of course. I have always had a very good diet, so I stick with that --lots of organic veggies, organic meats, low on carbs,  no processed foods, and not much sugar or dairy (I cannot totally deprive myself!). Aromatherapy has helped with my depression and anxiety and I take anti-depressants too. I am developing the skill of knowing when and how to push myself (that morning dog walk and getting to the pool) and when and how to give myself a break. I have not gotten much help from doctors of any type really.  I do have a great neurologist who diagnosed me and prescribes me Florinef when needed, but not much more than that. Recently, I saw an Integrative doctor (is that what they are called?) who prescribed low dose Naltexone (LDN). He thought I had some kind of auto-immune problem even though my tests have been negative (although I do have oral lichen planus). Anyway, that helped! It took a while to get the dose quite right, but I take 2.5 ml in the evening. I still sleep a lot --9 to 12 hours per night, and feel like I need more --but then how would I have time to walk the dog and go to all of my doctor appointments?? Ha/Ugh. Help all of this helps. Stay hopeful! The symptoms will wax and wane....research is being done and you have this great community behind you as well. 

K

[JaneEyre9]

On 1/9/2018 at 4:00 PM, kpflma said:

Hi JaneEyre9, I looked up that book and it seems specific to cancer. Does it outline the diet you describe or can you recommend another book that does? I mostly eat this way --I avoid sugar and processed foods. I do eat yogurt however. I want to see if there is anything I can do that will improve upon what I am already doing. So glad to hear you had a positive experience and are feeling better!

K

Hi Kpflma - That book first introduced me to the new idea of an inflammatory vs anti-inflammatory diet. I personally have a family history of gluten-intolerance and autoimmune disease, so unlike that book, I chose to avoid gluten which helped me immensely. It has been quite a while since I read it, but I recall there were sections about combining certain vegetables, garlic, ginger, and healthy fats to increase their antioxidant properties.

I've never found any one diet that I follow strictly (my closest was the paleo diet), but the idea I find in common with almost all anti-inflammatory diets are to do what you said - avoid sugar, processed foods; eat plenty of organic vegetables and high-quality wild fish and grass-fed meat. In my experience, the less grain I eat, the better I do. There are diets like the Paleo diet, GAPS diet, Autoimmune Protocol Diet, Specific Carbohydrate Diet, FODMAPS, and Whole30. I think the main idea behind these diets is to improve gut health and heal intestinal permeability. All this really helps the immune system to stop reacting to food particles that inappropriately leak into the bloodstream. Fermented grass-fed dairy is usually a reasonable exception to "no-dairy" from my experience. I have trouble with most fermented foods because they are high in histamine, but small amounts of grass-fed organic yogurt and some Custom Probiotics that reduce histamine have helped me.

[Peter Charlton]

My symptoms started the day they put me on Beta Blockers for Ventricular Tachycardia. I was found to be allergic to beta blockers, so they took me off them 10 months ago,  however, most of the symptoms are getting worst.

Of course the NHS didn't listen to me all this time, coming up with the old "Anxiety" chestnut, its only a few weeks ago I finally got a cardiologist to consider the logic that a medicine that disrupts the Autonomic Nervous System, might be the cause of my having a disrupted Autonomic Nervous System.

Quite frightening that we put our health in the hands of such illogical people. 

[kpflma]

Thank you JaneEyre9 ---very helpful! I guess I am still looking for the magic formula. I think my main inflammatory "food" is white wine that I tend to drink in the evening. I am going to drop skipping this and see if there is a difference. Thanks again....kpflma

[Bellamarie]

I found underlying adrenal fatigue and when I treated it with the adrenal reset diet my symptoms disappeared. Fell off the diet over Christmas for 3 weeks and  back to sick as sick and major relapse of symptoms dizzy vertigo nausea blackouts constantly. Salt helps. 

[Missy M]

I am just a layperson like most everyone else here. That said, it’s my understanding from reading many articles over the years that Dysautonomia can be caused by many different things. Causes that you commonly read about include autoimmune inflammation and trauma injuries (such as a car wreck). There can be other causes as well. 

In my case, my doctors figure that an inherited autoimmune disorder (which I and some siblings share) probably chewed up my autonomic nervous system.  Both I and a niece have Dysautonomia, although others in the family developed other equally serious but different ailments from their inherited autoimmune disorders. 

I definitely notice a correlation between times that my immune system goes into inflammation overdrive and times my Dysautonomia symptoms worsen. In my case they go hand in hand. Keeping my autoimmune inflammation down seems to help ease my Dysautonomia symptoms some. 

[Bluebonnet08]

Thanks for these responses!  They are really helpful.  I wish there was more research being done with this condition.  kpflma, I do think there is a hormonal component and that birth control pills can trigger the condition for some women.  I think it did for me.  I did some testing back in August and it was found that I had extremely low levels of vasopressin.  I am not sure if that is a contributing factor to my POTS.  I was going to look into it further, but now I'm pregnant, so I'll have to wait.  Pregnancy has been quite a roller-coaster ride with my symptoms, so it does lead some more support to a hormonal contribution in some cases.  

Thanks again for all your help.