Worsening symptoms when older....

[AbeFroman]

Hi everybody. I have been perusing the site for a few months when I first noticed my heart rate jumping while standing. A bit of a background and then my question, please hang with me...lol. 

I am a 45 year old man 6'3" and now slightly overweight. I have always had times of dizziness when standing since I can remember but it wasn't frequent or bad enough to warrant noticing really. I was active, had a high metabolism, and other than occasional migraines, I assumed pretty healthy. Looking back now though I do see things that stick out as warning signs. Then 16 year ago things changed. I hurt my back at work just bending down to pick something up. Since then my body has completely flipped. I seemed to recover from the back pain, but leg/foot pain remained. I went back to work (retail manager) and suffered through while taking pain pills to get by. I started getting what I though were anxiety attacks. My heart would race and I would get VERY dizzy. I re injured my back, then fell into a deep depression, I believe due to my body not cooperating as I had thought it was supposed to! Things that were annoyances became unbearable...I.e exercice (which I loved and I was an avid golfer), heat, foot, leg, wrist pain and chronic fatigue. I also noticed I was becoming less focused and, basically, dumber. I was told it was all just back pain and depression/anxiety. I never actually believed my foot pain was just from my back, btw, pain always started in my feet and worked it's way up my leg, not vice versa. Work became unbearable. I went through the nightmare of getting disability and haven't been able to work since. By pure luck my general Dr. noticed my heart rate was routinely high and sent me to a cardiologist. The cardiologist ordered a 3 day wearing of an EKG. During that I noticed my heart rate would go up 30+ bpm upon standing and go down when I laid down. That information led me here. I brought it all up to the Cardiologist and she said I may have POTS but seemed to not know much about it. I talked to my general Dr. And showed him in his office my heart rate changing. That was enough for him and he is sending me to another Cardiologist. Sorry for the background but 1) just needed to get it off my chest and 2) thought it might help.

Now my questions.

1) Anyone else experience worsening symptoms as they got older? 

2) Anyone experience worsening symptoms after another injury or illness? 

Thank you all for your help. It has been a godsend finding this forum and website. I suddenly feel less alone and much more optimistic.

-A

 

[BuffRockChick]

Hi!  Welcome!  I'm glad your tachycardia was noticed!  Mine was similar with symptoms for a long time and didn't notice the tachycardia. I thought I was "just out of shape" and have a lot of shame with that.  I thought I was "lazy" and "sedentary", but my fitness tracker says I'm "very active" when my POTS symptoms are less severe.

My symptoms get worse with stress (little stressors too!), pain, illness, etc.

Finding this forum has helped me a lot!  I've been learning what I can do to manage symptoms and been experimenting to see what works for me.  I'm experiencing fewer flareups that are shorter in duration, and I'm learning how to keep some of my functioning through them.  Can't control the tachycardia, but can control how I react to it.  

[SarahA33]

Hi, Welcome to the forum, I'm happy you've made your way here!  This is taken from the DINET "POTS: What to Avoid page" from our main website:   http://www.dinet.org/content/information-resources/pots/pots-what-to-avoid-r101/

Stress will often aggravate the symptoms of POTS. The body is continuously adapting to stress, whether it is physical, mental or chemical. POTS patients sometimes lack the ability to correctly process stress due to malfunctioning or excessive functioning of the autonomic nervous system (ANS). Patients may also already have high levels of norepinephrine, which is a stress hormone. POTS patients need to avoid stress (when possible) and live life at their own pace.   

Specific stresses such as surgery, childbirth and trauma (such as a car accident), viral illness,  have preceded or worsened the development of POTS in some individuals"

Also, here is a link to our physicians list where you can search for a doctor specializing in dysautonomia. http://www.dinet.org/physicians/  Just in case you may need it in the future. I'm glad your pcp is on board with sending you to another cardiologist, hopefully they can diagnose and begin treatment soon. There are non pharmacological measures that you could mention to your pcp while waiting to get into the cardiologist -- Increased fluid intake, Compression stockings, Increased Sodium.  Take care! Sarah

[AbeFroman]

Thank you both for your insight and and advice. I really appreciate it. 

Its interesting to see stress causes aggravated symptoms. I was always an easy come, easy go personality,  things would just not really bother me. Until I turned about 30. Then life, career, family just truly took a toll. Strangely I noticed stress affecting me more and more. Not just mentally but physically but still thought this how others always felt stress. Obviously there really was more to it than that. I have much to learn and a long road ahead but finding this site and forum has been a huge help already. 

Thank you again,

-A

[vtpixie]

I have had POTS since I was in 8th grade and motion sickness since I was a toddler. I also have CFS since senior year of high school. I am now 38 almost 39 and I did notice in the last 5 years or so my symptoms have gotten worse. I have more dizzy spells (although I recently did link some of them to when I have a larger amount of sugar than normal), my motion sickness has gotten significantly worse (even turning my head to look at something or looking down and up to quickly can trigger a spell). I also feel like my brain fog has increased it's hard to remember the name of simple things and this aggravates my husband to know end (even when he knows what I am referring to he wants me to say the name of the object, or action).  It's hard to do to much and I do tend to get injured more often as my balance sucks now. I used to be a ballerina and now I fall over if I turn to quickly.  I still try to exercise, but get tired out quite easily. Any help for myself also would be appreciated.

[Amyschi]

So sorry that all of you are suffering.  Sad to know, but "glad" not to be alone in these struggles.   Abe, just wanted to mention about the pain in your feet extending upwards.   Maybe check with your doctor about doing an EMG/nerve conduction study to rule out neuropathy in addition to your back issues.  I have severe muscle pain from what I believe to be fibromyalgia (another common co-morbidity on which they are doing a lot of research on connections to the autonomic nervous system), but I now have stabbing pain and burning in the feet, and when I was tested for dysautonomia, an EMG did show polyneuropathy  (possibly from autonomic neuropathy??).   If you are diagnosed with POTS/dysautonomia, there may be other issues going on as part of that syndrome?i

I am always very curious to hear of others' experiences with dizziness.   I started with chronic dizziness after a viral illness at age 23.   It was not until around age 53 or so that I developed the dysautonomia/chronic fatigue symptoms.   Vtpixie, I can certainly relate.   The dizziness and lack of balance is overwhelming and completely limits functioning, even at times I don't have any POTS or dysautonomia symptoms.   I have gone in the last five years to being somewhat functional to now not being able to leave the house without a wheelchair due to the amount of dizziness.   If I drive even a mile, I will not be able to walk at all when I get out of the car.    It's like an over-the-top abnormal motion sensitivity that would not be explained by the usual POTS mechanism.    I believe there is much more to these autonomic problems than just the symptoms occurring on standing, which is bad enough!   It sounds like from what others have posted here that there is also a strong vestibular component that is either a result of the dysautonomia (altered blood flow perhaps?) or perhaps that an inner ear hypofunction is a co-morbid condition that is common with the dysautonomias.    Also, for anyone that also has cervical arthritis and/or stenosis, it seems like there is a definite connection to that, either maybe affecting blood flow to the brain or disrupting signals to the vestibular system and/or stimulating the autonomic system.    There is a lot of "controversy" in the literature about all this, but I believe it strongly just from my own experience only.    If anyone is interested in the connections, check out videos on YouTube by Dr. Andrew Holman; very interesting on how all these conditions are interconnected.    I know all this has been brought up in the forum here at different times.    Abe, it is very interesting to me how your symptoms worsened or started after your back injury.   I have come across stories of people who have developed severe episodes of tachycardia after a car injury with trauma to the back, when they were perfectly normal before.   There is theory that trauma or illness can spark dysautonomia.  

I would be very interested to know of fellow sufferers who have this constant dizziness, as to whether or not your doctors did vestibular testing along with autonomic testing, and what the results were.   I asked my neurologist if he would do ear testing, to which he agreed, but I have not been able to follow through with it yet.  

Good luck to everyone, either in your search for answers or help in finding relief!    Prayers to all of you - no one but a fellow sufferer knows how debilitating trying to live with these conditions is, but also I am so grateful for anything else I don't have on top of it.   That is what gets me through each day.

[AbeFroman]

vtpixie- I notice some of the same as you. I definitely have the brain fog and do seem to get dizzy/light headed more often. I look back now and realize I did get lightheaded frequently and just assumed Maybe I needed more sugar. I, however, would never be assumed to be a ballerina. Lol! I hope you get help and find answers.

 

Amyschi-  So much of this connects with me. I was diagnosed with Fibromyalgia as well and have a lot of muscle pains. I also suffer from ocular migraines and migraines that seem to start as shoulder/neck tension headaches.  Also, relating to ear issues I have developed tinnitus in my left ear, fortunately  though I am still don't get dizzy often. It is not the dizziness that is debilitating me it is the fatigue and pain....mainly. Again while I had occasional symptoms when I was younger they definitely ramped up after the first back injury. I do indeed believe I have neuropathy as you mention. It is something I will be bringing up with the Dr. for sure. I saw the new Cardiologist Wednesday and he agreed it sounds like POTS. He did the lay down/ stand up test and seemed even more convinced. He is doing a few other tests just to make sure there is nothing else which I very much appreciate. 

I wonder if maybe the change in severity maybe due to the back injury OR a medication I took (pain pills, muscle relaxers, steroid shots). At this point it is a moot point but still something I am curious about. It is just amazing to me that in approx. 15 years I went from in shape, walking 36 holes of golf in the So.Cal sun and working 60 hour weeks and having a family to the mess I am today. Completely NOT my choice! It is as if my body flipped a switch and turned bizzaro me..lol! 

Anyway Amyschi and vtpixie thank you again for the replies. I very much agree with you Amy, nobody else but fellow sufferers realizes what we have to deal with. Hour to Hour, Day to Day! God bless! 

[SarahA33]

Abe or Amy-- Are either of you familiar with CRPS - Chronic Regional Pain Syndrome? A differential diagnosis is Fibromyalgia. CRPS can cause severe musculoskeletal pain, like In your feet, hands, arms,  and can cause changes to the skin in some cases. Some people start experiencing this after a trauma to their body - surgery, accident, health issues like stroke or heart attack. The type of pain can vary but it includes a throbbing, pulsating sensation, swelling, joint pain, temperature changes, skin discoloration including redness and a shiny skin tone, muscle spasms, decreased ability to move the affected area. We just posted an article on our DINET facebook page about a football player who went through all to familiar diagnosis challenges and suffered a terrible amount of pain until he was diagnosed with CRPS. I think he plays for the seahawks now!   Doctors still don't understand the exact cause but they do think the cause may be a dysfunction interaction between your central and peripheral nervous systems and inflammatory responses. 

Abe, it sounds like you have found a good cardiologist who is knowledgeable and willing to work with you. That's so important. I hope your upcoming tests go well. I just wanted to let you know I really related to your story about the progression of your condition. I cannot even begin to tell you how many members I've seen throughout the years here who would also share so many similarities with you. I was in college, working, and a coaching a competitive cheerleading squad when I first got sick.  I was very athletic and never stopped, then I woke up one day and everything was different. In the matter of a month, I wasn't able to get out of bed without help and was passed around to 30 doctors who misdiagnosed and blew me off.   When I was first diagnosed I found DINET and was able to start making sense of things, but all the while wondering how I lived that way for almost 3 years before they figured it out??

 

[AbeFroman]

Wow this is good stuff! Thank you very much Sarah, I have never heard of CRPS but will definitely look into it now.

Very strange "Syndrome" this seems to be. The variances, the timing, changes, etc. It seems to be a trend with Dr.'s blowing of people with conditions such as POTS, Fibromyalgia, etc. It is so incredibly frustrating knowing your own body and knowing something is wrong but being told basically, "it's in your head". I really started doubting myself and questioning my sanity. Thanks to THIS forum I have been proven correct and it is NOT "in my head". I can't tell you how many other medical forums I looked at and could find similarities but things just didn't fit. When I lurked on here everything just clicked. As if a jumbled puzzled just got put together, complete and correct. To anyone else reading this or lurking on here, NEVER GIVE UP! You know your body, you know things aren't right, you are NOT crazy. I to now find myself wondering how I lived all those years, lol! 

Anyway, thank you again for the information, much appreciated. 

 

[Lisakay]

I'm 48 and was just diagnosed w pots 8 mo ago.. I am pretty much house bound 85%  and able to do very short walks or trips to small stores on my better days 15%     and bed bound 40% of the time I am in the house.. 

My pots diagnosis immediately followed an esbl urosepsis and 2 surgeries all which took place Aug and Sept 2016.  Pots in October 2016

Major short of breathing issues.. 

Muscle spasms 

. Weakness.. 

Headaches 

High hr 

Hot and cold tingling sensations 

Fluctuate BP low normal to normal to high normal.. With Diastolic affected mostly. 

Tinnitus 

Weird feeling at base of ribs.. Muscle? Liver? Idk 

Cannot tolerate certain foods... Makes my symptoms worse. My ast is low my albumin and potassium are right on the low border. 

 

Looking back I too can see symptoms that may have been related to this pots diagnosis.. 

 

Anxiety attacks and migraines  in my 20s.. 

After surgeries or periods of high emotional stress I would get sob for days, weeks and once for 3.mos..These spells always spontaneously resolved. 

I also became intolerant of MSG and sulfites and other things in food. 

I became sob on air pollution days a couple years ago as well 

I got horrible arthritis in spine, hips and shoulders almost overnight at age 44.

I think I may have lived the rest of my life with low level Dysautonomia... Although I cant know for sure 

. But the stress of 2 surgeries and a bacterial superbug infection threw me overboard

  I am not happy when breathing is difficult more than half the time

Yet x ray and. Ct scan of lungs all Clear and Alpha 1antitrypsin is negative. 

So here I am hoping to stay on top of the research and hoping to get back to functional.. 

I am having a hard time finding good docs. And I am not on any meds except Allegra. 

 

[AbeFroman]

Hey Lisa, thanks for the response. It all sounds VERY familiar! I hope you can find a good doc that can may help give you SOME relief. Unfortunately when I went to my general Dr. first and mentioned POTS they thought I was asking about Pot, the drug! It is difficult as it seems it is not a very common "syndrome".  Hopefully more will be learned and new research will help sooner rather than later.  At least for me it has helped greatly to find this website and forum and see I'm not alone or crazy! Lol

Best of luck!