CDNPortGrl

Amazing story @CallieAndToby22! Wow, it’s great news that he saw the bite and took action. He certainly averted a lifetime of many unfortunate health issues.

It turns out I will be also using antibiotics so fingers crossed, it goes well!

Oh dear, I’m sorry to hear that regarding Dysautonomia. I was hoping that wouldn’t be the case. In my circumstance, the symptoms I had previously were replaced by MCAS and everything else that Bartonella graces one’s body with. I seriously hope the POTS type symptoms don’t return. I was under the assumption that when treating Lyme, you can effectively treat the dysautonomia as it’s the underlying cause for some perhaps. I remain hopeful that for many this may be the case 🙂. I haven’t started treatment yet because it has to be done naturally since antibiotics wreak havoc on MCAS. So who knows what will emerge along the way.

Best wishes to all of you in your quest for comfort and better health!! 🥰

Hello everyone,

I joined this community a short while ago as I was told in the ER that I had POTS and many issues I was contending with, were identical to what anyone with Dysautonomia is dealing with. After further exams with the cardiologist, he ruled that I do not have POTS. However, I still was contending with the fatigue, headaches, weakness, etc. 

It turns out I have Lyme disease. I'm only posting this because my doctor refused to test me for this then when I did have the test, it came back negative. I would like to suggest that patients get the California or Germany lyme disease test to rule that out. It causes Tachycardia and will cause 'flare ups' throughout your life if not treated. The flare ups are identical to what people with Dysautonomia describe. 

I wanted to share my experience in the event that some of you were left to just 'manage' and your doctor was uncertain. 

Lyme can also co-exist with other ailments so IMO it's wise to investigate regardless. IMO there's been a huge surge in ticks in the past number of years where I live so it seems to be a growing issue that doctors are oblivious about. 

Best of luck!

@Pistol this is helpful, thank you! At the end of the month, I’ll be prescribed something for the type of gastritis I have once the biopsy is analyzed  so perhaps that will help. In the meantime I’ll try to drink after eating. That’s interesting about the Zofran. I can see how it helps. I’ll ask my doctor about it. 

Hello everyone, I have been struggling to eat for a while and the constant lack of food in my system is making my symptoms worse. Have any of you figured out how to calm the sensation down of feeling uneasy eating? It’s as though it will induce the need to vomit and the throat tightens a bit. It’s quite a nuisance. I’m hoping there’s a supplement that can help. I was taking a valerian based calming supplement but it didn’t do anything so I concluded it wasn’t anxiety related and just another POTS issue. I know we all have a variety of symptoms that cover a large spectrum but I thought I would ask in the event that any of you struggle with this too. Thanks!

Hi @toomanyproblems that’s good to know. I was reading about soldiers in WW1 dropping with POTS and how it was referred to another name back then so I assumed that it was this rather ambiguous ailment that has existed for centuries without a lot of awareness. It’s wonderful to hear that that is not the case. I would love to get to the point where the trigger is identified, so even if it was an injury or an illness, perhaps there is a key ‘change’ in every circumstance that could be addressed - a signal that can be retrained, etc. Rather then always treating the syndrome.

10 hours ago, Pistol said:

@CDNPortGrl - there IS more research going into POTS since long haulers post COVID POTS. The symptoms from it ARE POTS, but many people have a mild form from it, and - hopefully - a temporary one. But since there are so many people discovering POTS symptoms there now is also a greater need to find out more about it. I personally know several people who were diagnosed with post viral POTS and - although affected by the symptoms and even disabled for a while - have made a great if not full recovery after one to two years. COVID has not been around that long that we can truly say if the people will fully recover, and we have not yet seen if Long Hauler syndrome is a chronic dysautonomia. Time will tell!!!!!

While it’s extremely unfortunate that anyone should ever go through this, it’s promising news that there is more research going into it. I hope that specialists start recognizing it too and not being so hesitant to diagnose it. My brother-in-law’s wife most certainly has dysautonomia but she’s not listening to me and bounces from specialist to specialist being told there’s nothing wrong with her or being recommended antidepressants. Unfortunately at this time, many people have to tell the doctor what their ailment is and then the doctor proves the theory. 

On 6/8/2021 at 2:53 PM, Special K said:

Hi - First time posting, but wanted to thank everyone for their posts. 

I am newly diagnosed with a mild form of POTS, and my doctors suspect it was triggered by the Pfizer vaccine.  Symptoms of tachycardia, lightheadedness, and exercise intolerance started abruptly four weeks after my second dose.  In retrospect, I *might* have had some occasional symptoms in previous years (slow HR recovery after extremely strenuous exercise, lightheadedness after large meals, increasing intolerance of alcohol) but nothing dramatic or notable.

I did a full cardiac and pulmonary workup (which was all normal) and the tilt table test which showed dysautonomia tendencies.  My PCP says that every week now, she is seeing previously healthy people with these symptoms and she thinks anecdotally it is the vaccine, and similar to what people are experiencing with Long COVID.

I have gotten about 50% better with massive lifestyle modifications (which you all are familiar with), am rebuilding my exercise tolerance and following some of the Long COVID protocols, like breathing exercises, which seems to be helping.

Just wanted to weigh in with my vaccine experience.  I have asked my doctor about taking or avoiding boosters, and she said, "let's discuss in the fall."

Oh wow, this gave me goosebumps to read. It sort of proves my suspicion. Interestingly, you likely had a different shot then I did so I may have gotten POTS no matter what vaccine I took. It’s wonderful that you’ve seen some improvement. I hope it continues for you! I’ve got a rather serious case so I hope to get to a more mild version. 

7 hours ago, Pistol said:

I would like to mention that most COVID Long haulers do not seem to be afflicted by the same illness as chronic POTS patients. It appears to be more of a post-viral malaise type condition that is temporary, except for some people in whom the COVID ( and even the vaccine immune reaction ) have triggered a real POTS episode that they would probably have gotten from a different virus, such as Flu etc. as well. 

Oh I missed seeing this. Interesting. I was in many ways hoping that more research would go into POTS due to long haulers but perhaps not in that case...

8 hours ago, cmep37 said:

Don't get too downhearted - I think your level of recovery can depend a lot on what caused your POTS @CDNPortGrl I do know of a number of people with post-viral POTS who have returned to pretty much normal lives, especially once they got appropriate treatment.  Don't forget a lot of us on the board are either newly diagnosed or else pretty severely affected - people who are less badly affected are off living their lives rather than posting here!!  I have POTS secondary to hEDS and as I've been severely affected for nearly 20 years now I know exactly where you are coming from about grieving your previous life.  I would say it took me about 5 years to mostly come to terms with it and some days I still struggle.  I can't do meditation either - I do square breathing instead. Breathe in for 4, hold for 4, out for 4, hold for 4 - I find focusing on counting means you can't think of anything else and it does calm me down.

Thank you so much for your response. It helps more then you can imagine. I’m still thinking that this was brought on by the Astra vaccine or a leak from a spur since a bike ride was the last thing I did. Although I did read that Gastro issues can cause it and I have that so it’s quite the large question mark.

I’m so sorry to hear that your ordeal has been 20 years. This type of thing really tests us out and what humans are capable of enduring. It’s unfathomable that you have had to face this for so long. You’re an incredible trooper and the fact that you take the time to offer words of encouragement to others, speaks volumes to the kind of person you are. I remain hopeful that with COVID long haulers, a ton of research will go into this ‘finally’ and maybe new methods of improving people’s lives will develop. It seems to be a very much forgotten ailment and no one in the science world is doing much about it...at least from what I’ve learned. If a large enough subset of the population shows POTS like symptoms, it could spur much needed change. 
 

Thank you for the breathing tip, I’ll try that!

I have the same collar as you and I actually don’t really feel relief. It even bothers my jaw; however a cheap padded whiplash collar from the local drug mart gives me relief. 
 

I’m about to try prolotherapy to deal with my neck issues and see if that helps. Only a few places to my knowledge, do the surgery for CCI and the risks are still high. The one testimony I found online from a young guy, said his POTS went away when he had the surgery. My Flexion and extension x-rays don’t show any issues but it’s not as thorough as a standing MRI. 

This is an older post but I wanted to send you virtual hugs. As corny as that may sound, I truly wish I could offer comfort. You are too young to have to be tested in this fashion. I’m in my early 40’s and feel helpless to this sudden and very new setback. I’ve only had POTS for a month and other issues preceding that for a year. It’s very hard and like you, I have to try to manage the depression as I noticed I can’t eat when it creeps in, the sleep is poor and the vicious cycle continues. It strikes me that the loss of your relationship compounded everything. I would feel exactly the same; however, you need to be with someone who’s going to be ok with who you are. A girl I went to school with who has debilitating Fibromyalgia and can’t work, met a wonderful man in 2020. He knows what his life will be like while living with her but loves her to bits anyway. I believe that you will find that person. Hang in there. One way to meet a soul mate is perhaps through a support group of fellow dysautonomia ‘sufferers’. You never know 🙂. As for the Heath issues that go up and down, perhaps these setbacks can either be managed or mentally not as ‘impactful’ if you learn how to meditate. My sister took at least 6 months before it worked for her and it’s been life changing. She’s trying to get me to do it to. I do it before falling asleep and I’m terrible at it because my depression and stress consume me but seeing her, assures me that it will start working and I’ll learn how to observe thoughts rather than allow them to consume me. Consider this as well. IMO POTS is an outcome of the vagus nerve not working correctly. The vagus nerve can be stimulated by positive thinking and many other things such as gurgling water, vibrating the tongue for 20 seconds, etc. So if the vagus nerve is happy, the dysautonomia may calm down as well. 🙂

I would be interested to hear if anyone had success at the Mayo. I’m considering paying insane amounts of money to go there from Canada as I’m quite desperate. 

This is an older post but I was curious to know how your doing and if you came to another conclusion? 

It might be worth exploring if bone Spurs are on the spine - possibly affecting nerves. POTS is a misfire due to the vagus nerve for instance not working correctly. 

Also, people are often diagnosed with POTS or Fibromyalgia when they have a CSF leak that’s undetected. The thing about that is that typically headaches accompany it.

Finally, it might be worth exploring matters such as Craniocervical instability as that can only be detected in a 3T MRI machine or a stand up MRI, or a digital motion x-ray. Sometimes a Flexion/Extension x-ray can show it but I don’t know if it’s as accurate. 

Oh boy, this is disheartening to read. I haven’t slept in a month since POTS kicked in. I usually sleep every third day ‘ok’ and the other nights are a broken 3 maybe 4 hours if I’m lucky. I assumed this would pass but it’s not looking so hot judging by what you wrote. 
 

Getting to sleep is not too hard as I wear the Cefaly device to calm my brain, I listen to guided meditation and do the breathing thing. Unfortunately I wake on the dot at 2 am and it’s unlikely I sleep again until 6 am. I have to figure that we need to get the meds figured out to control the erratic heart...,  

Btw, in my last hospital visit I expressed concern about peeing 9 times in an hour and a half. It turns out I had a UTI. Perhaps at times it’s a dysautonomia issue but perhaps not always. 

This is great! Thanks for the information 🙂. I will look this user up. 

I’m presently still living in the ‘denial’ phase of being diagnosed with POTS, which leads me to do a lot of research on the cause. I feel as though treating the symptoms isn’t really achieving much. Why does the POTS occur and how can that be changed? Is the train of thought I have. So I stumbled across this clinic in Texas called biologix center.It seems to be run by chiropractors which seems a bit ‘eh‘ to me; however if what they wrote is correct, I would like to be open minded. I can’t however, find a single instance of someone having been treated by them with POTS who left a review. That strikes me as odd. Have any of you heard about it or been there?

Interesting observation and answers too! I had vestibular migraines (most of the time no headache) prior to developing POTS. I was in a permanent postdrome phase that never lifted and very rarely had a migraine. I was told I have migraines though because my mother had them. My mother had the standard - lights off, dark room, style migraines; whereas mine were not that at all. 

It's interesting to read these answers (and a great question!) as I'm new to POTS - developed in May. I've always been extremely active so my depression levels are through the roof. I've lost count how much I cry. I have two young boys - 4 and 6 who don't have a mom to look after them. My husband is doing everything. We had the summer almost completely booked for camping trips and I can no longer go. I was an avid camper - hiking, canoeing, etc. and last summer was the first time my mom (in her 70's) ever camped with us. I thought it was the beginning of making so many more wonderful memories. To make matters worse, as my job was an Occasional teacher, I only get steady jobs maybe once or twice a year so I don't qualify for disability, so now we're down to once income which we simply can't live off of in the GTA (crazy expensive). 

Anyway, enough of my sob story since we're all going through this. But the reason why I posted this is because I had hopes that treatment would pull me back to a close 'what once was' scenario..it's hard to read that that's not reality. I guess I'm going through the stages of grief with denial as the current one. It's in many ways, similar to death. Acceptance is the last phase. 

My sister wants me to meditate like mad but after many weeks, I still haven't accomplished anything. My thoughts ramble away while I'm trying to listen to the guided meditation lol. 

Hello everyone,

I'm just curious to hear from those of you who had an CSF leak diagnosed - or even if you suspect one as that could be helpful. What were/are your symptoms? When I look into it, the main 'thing' is postural headaches. Was this what you endured? I used to have migraines but they vanished. I don't feel any different sitting up (except the heart issue). Today my left ear feels blocked but it hasn't been like that in well over a month. I have a stuffy runny nose in the mornings but not the rest of the day. I've had only two days of Tinnitis since this nightmare started. Obviously I have POTS (which is why I'm on this forum), but it strikes me that people with CSF leaks also have the tell-tale headaches that accompany the POTS. As people are so unique in their symptoms, I think a forum such as this would offer more insight into how the general public reacts and is likely a more useful source of 'what to look for'. Thanks!

Very sorry CJ65, I didn't properly answer your question. Correct, it was a spinal anesthesia for an epidural. I don't recall feeling the pain in the spine as child delivery trumped everything pain wise, but 24 hours later, it was very much a head issue and I don't recall the spine hurting. 

KiminOrlando, to my knowledge, Craniocervical Instability only increases your chances of a leak if you have Ehlers-Danlos Syndrome. It's associated with Spontaneous CSF leaks. So you would need to know if this is what caused your instability. Also, as scary as the surgery is, I gather it can get rid of the POTS, from the online testimonies I read..if that's too scary, try Prolozone therapy perhaps. You might end up being one of the lucky ones to escape this...

Yes in 2016 I knew exactly what I had - the well known head splitting - worst headache of your life while standing, situation. Because it followed a specific event and was clearly a leak, I was treated right away without tests. This time around if I have a leak, it's a Spontaneous one and will be extremely hard to pinpoint..the more I learn about this, the less likely it seems to be the old tear. 

That's interesting Pistol. So it certainly doesn't rule out the possibility of the vaccine creating a reaction. I'm currently looking into the CSF leak theory but the earliest evaluation appointment is in October..yay Canadian health care 😏.

I'll definitely have the second Astra shot to avoid COVID but I can't say I won't be jumping out of my skin about it. In Canada they're giving other vaccines as the second shot which I don't agree with, so hopefully I get the same one again. I would assume that mixing shots will cause a worse reaction.

Wow, you are onto something. This is what I had when I gave birth in 2016. I didn’t realize what the acronym stood for. They patched my spine with blood but perhaps it somehow opened up again...or a new leak formed..

It’s scary that this is the circumstance. Our lives are literally in their hands so for them to be unaware of how common this is, is greatly concerning. Hopefully COVID long haulers help drive research into this ailment and a cure. I struggle to think this is permanent..I will definitely look into the CSF leak though. Thanks!!