Hippopotsamus

@p8d & @Sushi thanks for the info about helpful NPs, I’ll expand my search to include them too! 

12 hours ago, Pistol said:

@Hippopotsamus and @RecipeForDisaster --- I found through my own experience that there is no way around doctor shopping. Although I am lucky to have had a phenomenal PCP right from the start  I could not find cardiologists or neurologists that understood POTS. I kissed a lot of frogs before I found my prince in the way of specialist, but I don't know where I would be today without the endless support and patience of my PCP.  What is absolutely necessary ( besides a basic knowledge of dysautonomia in general or at least an open mind towards it ) are the following qualities: 

- listening. If the doc does not listen and take you serious it's an automatic out. 

- willingness to work with you in trying a treatment. If he/she tells you to take a beta blocker and expects you to be done it's not worth your time. Many docs believe that if they treat ONE symptom the rest should improve as well and then label you as difficult or hypochondriac when you don't react as they expected.  

- understanding that as PCP he/she is your absolute go-to person. A PCP should not simply refer you to a specialist and then expect that doctor to take over. Dysautonomia is a multi-faceted illness that requires a TEAM of specialists who work together in finding the right treatment for ALL of your symptoms, and the PCP is the coordinator of all of them. 

- understanding that dysautonomia is a chronic illness and MAY ( not necessarily will ) lead to disability. The PCP then is responsible for helping you in that process. 

What I have found to be a helpful tool in knowing what to expect from your doctor is the book " The Dysautonomia Project ". It is a book written for both patients and physicians and is a guideline for both in what to expect and how to approach POTS treatment. I read and shared it with my PCP and Cardiologist and both found it immensely helpful. You can get it at the website with the same name or at amazon. 

To both of you I encourage you to not settle for anyone that does not make you feel relieved after the visit. For most dysautonomia sufferers it is like a huge load taken off when we hit the jack pot and find the right PCP. Best of Luck!!!!!

 

@Pistol, your wisdom is invaluable as always. Thanks for taking the time to respond. 

Hello, 

I was hoping to get some suggestions. After discussing my recent exacerbation of POTS and autonomic symptoms (orthostatic intolerance, shaking spells, pre-syncope, fatigue, weakness, shortness of breath) after having Covid with my primary care doc, she has once again dismissed my difficulties as anxiety and tried to push me into mental health treatment and starting an SSRI (which I tried before at her suggestion but that put me in the ER for crazy HR and flashes of burning sensations all over my body, I think she forgot. She doesn’t believe my medication sensitivity either). I’m fed up. Her specialty is dermatology by the way. I tried to explain that my issues are neurologic and not psychiatric. Has anyone else been able to find a PCP that believes in autonomic disorders? How did you find them? I live on Boston’s North Shore and am so done with this one. 

I wanted to share my experience. I am recovering from presumed Covid infection. I was hospitalized for 4 nights for shortness of breath. Tested negative (however MDs believe it was a false negative- up to 30% tests may be false negatives I was told). I was off all POTS meds and was only struggling with some daily fatigue before infection but this brought back all of my symptoms full blown. It has been about 4 and a half weeks since the hospitalization. First 3 weeks were real struggle. It’s hard to feel so sick and have to be isolated. Thankful for having an area of my house I could quarantine and a nice husband who would slide food in the door and run. And for a sense of peace and strength that I can only say that God provided. But I have been off all inhalers for a week now, breathing much better, and able to sleep without being totally propped up anymore. But man this thing throws your nervous system for a loop. I am still very limited, can’t stand for more than a couple minutes, activity is miserable. But seeing small improvements week to week. So as scary as all of this is, and as frustrating as these setbacks are, I wanted to encourage anyone else out there who gets infected that recovery might be slow but each week better than the last in small ways. I’m an “essential worker” and a bit worried about my job status/future if it takes me a couple months to get back on my feet (literally). Also in the past when I first got POTS and had so many totally bizarre and scary symptoms I remembered that it felt so strange that the world around me was still the same but I was struggling so much. This time with my recovery it feels like everyone is dealing with something strange and uncertain too. I just hope and pray that I can get to a level of functionality that I can take care of my kids & spouse if he ever became ill. It just blows my mind that so many people can be infected and never develop or only have mild symptoms. We live in a relatively densely populated area of the US and hoping to see some plateau or decline in cases soon. 

After developing full blown POTS during a second pregnancy (and realizing afterward I had been experiencing dysautonomia symptoms for years without having a name for it, and that I was the third generation of females in my family to experience these symptoms), I am still glad that I have my children. Pregnancy was hard and so was the first year post-partum. I think if I had gone into it knowing what my diagnosis was, I would have known how to manage it better and taken it easier and probably been less anxious during the whole thing. If you have a good support system and can keep your overall stress low so that your body can heal, it is doable. I had to learn to lean on my faith when my strength was low and my anxiety was high, and some days were really bad. But 3 years after I only have orthostatic symptoms when sick or stressed, and am off of medication. I can parent just fine, and the experience has taught us to slow down and live more intentionally as a family. 

2 weeks ago I switched from a smartphone to an old school "dumb phone" that just calls and texts, so no internet, email, or small screen scrolling. The quality of my sleep has improved dramatically and I would say that my anxiety has decreased by half, and this is the only thing I have changed. I wanted to pass this along in case it could help anyone else. 

@Shepard1 Interesting that you say it was 3 months till your symptoms hit. It was also about 3 months between my flu shot and my first “dysautonomia type episode”. Went to ER for POTS attack with the HR up and down/hot then chills/teeth chattering stuff. Never had it before that, they thought I was just dehydrated (yup!) and IV fluids resolved it. I am pro-vaccination too, but I think some people are predisposed to dysautonomia then something triggers it. Growing up I had episodes of lightheadedness after standing and in the shower but that was it. 

On 2/13/2019 at 6:42 AM, RecipeForDisaster said:

PM sent.

Can u please send to me too? Especially if  in MA. Thanks!

I just quit hormonal birth control and started the non-hormone IUD a couple months ago. I felt some hormone fluctuations the first 2 months, much heavier periods, my skin breaks out more, and I’m more emotional, but I feel like my POTS is a little better. My heart rate has been more normal and I feel less chest pressure which is hard to describe. Anxiety maybe a little worse? I always felt like birth control evened out my emotions tho. 

Feeling like crap no matter what you eat is miserable. The fear about what kind of reaction your body is going to have is such a huge source of stress too. I definitely understand. I think that histamine has been a large trigger for my symptoms as well. You might look into DNRS? I’m using it to work on my food intolerances, a lot of other people have had success with it? People who were down to 5 “safe foods”. I used to be down to about 10 when I was at my worst. And I was sensitive to food temperature, volume, too much protein/fat at once at one point too. I also had bad pots episodes after seafood, nuts, wine, tomatoes, berries, medications, things I have had all my life. Just a couple of bites then the “feeling of doom”, lightheadedness, tachy, shaking, then out of it for days. But many people have totally recovered and they eat anything. It works on the part of your brain that deals with the fight-or-flight and trains it to have normal healthy responses instead of sending out the alarm signals to the rest of your body any time you eat something. Our symptoms are absolutely real, and it is because our stress response system has become dysfunctional somehow. My food sensitivities appeared at the same time as my POTS and I am working on healing both with this program. 

Thanks everybody for your responses. I have been hesitant to get one (got shot every year before developing POTS, but since my diagnosis have felt like I’m generally more sensitive to things, have had abnormal responses to things I used to tolerate), but I might be brave and get one. I work in a pharmacy and have sick people coughing on me all day! And I got the flu last year. It was two weeks of awfulness. 

The first period that I had after switching was pretty heavy, but I just had my 3rd period, and it’s getting lighter. I was quick to jump on the pill bandwagon too after giving birth (I developed POTS during pregnancy), and was worried that my period might make my symptoms worse. But I feel so much better without the hormones. I wasn’t expecting that. 

Hello, I wondered if anyone else saw improvement after stopping hormonal birth control? I just switched to the non-hormonal IUD and my Fitbit has my daily resting HR down about 8-10 points. It goes lower when I’m sleeping (into the 50s) and I’m not in the yellow (fat burn) range as often doing normal activities. 

@WinterSown thanks for sharing about milk working as a helpful electrolyte solution. I used to drink it all the time growing up but for some reason had stopped. When I started drinking 2-3 glasses a day again I started to notice a reduction in my fatigue and headaches that I wasn’t getting with the Nuun tablets. 

Anyone get an intense ache in their tongue or palate that came and went? It also feels like my jaw seems fatigued easily. I started having this in June when I was under a lot of stress moving and picked up a viral infection. It went away and now is back in Sept since I picked up a cold from the kids. It is not constant, sometimes more intense after eating, sometimes happens even if I haven’t eaten. Feels like a cramp along the sides of my tongue that follows it down my neck. But some days it is just awful. My PCP wondered if it was an allergy but it happens on/off antihistamines, no matter what I eat. (She’s useless anyway). To me it seems more of a nerve or mechanical issue? My body does not seem to respond normally to anything anymore, so could it just be a bizarre dysautonomia type reaction to a viral head cold? 

@JoeJack101 Yes the DVDs take some time to get through. But all of the information really helps you get a grasp of what has happened to your body, how neuroplasicity works, how you can actually affect your brain chemistry to heal your body. Even after the DVDs you continue learning as you begin practicing,  and from the experience of others on the community forum. Part of me thinks that there are many aspects of modern life that make us more prone to developing dysautonomia, chronic illness that primitive people did not have? A good question. 

Hello. I was wondering if anyone else had issues with this or has found something to help it. I have POTS and often feel panic after eating. I have never had a textbook anaphylactic reaction to anything (no throat closing, severe rashes, facial or tongue swelling) although I have had shortness of breath and chest tightness after eating. I have had all negative IGE blood tests. But I have become very nervous about eating. I avoid all alcohol and caffeine and cut back on sugar and carbs. Any suggestions appreciated. I currently take metoprolol, Claritin and Zantac. (Thought I would try the mast cell meds just in case, not making much difference I think). 

@Bluebonnet08 I did improve in some aspects pretty quickly after delivery, I remember being surprised 7 days postpartum that I was able to walk around a hospital cafeteria and take a shower standing up. Previously I was only able to walk very short distances and pretty much avoided showering because i got too dizzy. In the few weeks after delivery I forced myself to go for walks around the block, and it was sooo hard and uncomfortable (breathing felt so strange, constant headaches) but I knew I was really deconditioned by that point and it was the only way I was going to see improvement. Then I started the beta blocker and was able to do even more. By 6 weeks post partum I was driving again and taking my older daughter to summer camp. I felt exhausted and was still short of breath but I could function enough to take care of myself and kids for the most part as long as I paced my activity. 

I still have the sudden attacks but they became much more infrequent and less severe after delivery. (Only every couple months). I started taking Claritin and Zantac during my pregnancy because I had allergies & heartburn and have had some of my more severe attacks when I was not on those meds. But I have had them while on meds too. So not sure if there is a mast cell issue. Caffeine is the only definite trigger I have identified. 

The only things that I found to help those last few weeks of pregnancy were moving as little as possible, laying only on my left side, drinking an ensure and a glass of water before getting out of bed in the morning. And wearing knee high support stockings from the time I got up till I went to bed. I had totally lost my appetite (and was worried I was reacting to some foods, I still struggle with this, allergy tests negative but if you get an attack after eating something you get scared to eat it again). But when I forced myself to get more nutrition, tried to get enough daily protein for my baby, it helped me to feel a little better too. The anxiety was so bad, I had to try really hard to distract myself from all of the totally abnormal sensations I was experiencing. The more I focused on them the worse I felt. 

I can remember how bad it was. How a month felt like an impossible eternity. I would watch the clock and be glad that just a couple hours had gone by. But it definitely didn't stay that bad. And new babies are a lot of work but they are a wonderful distraction. I was too focused on my daughter to think about my symptoms. I kept the changing pad on the floor and slept on the couch so I didn't have to do stairs until I got stronger.

@Bluebonnet08 My first attack ever happened at 21 weeks with my second pregnancy. Then around 28 weeks they began to happen weekly, then daily with presyncope and orthostatic intolerance by 32 weeks. From 32 weeks until 38 weeks was the worst for me, I think compounded by anxiety because I had no idea what was happening, no previous history of POTS. I think I remember them slowing down near the end. I could not figure out what triggered them because sometimes they were after eating and other times in the middle of the night or early am. 

10 hours ago, Scout said:

My attacks are just like yours. 

I feel this odd sensation that it is starting (usually I noticed my breathing changing) and then my heart is already racing by then. I feel dizzy, nauseated, very shaky, with sharp chest pains. Sometimes my hearing goes funny, or my ears ring. Mine seem to last anywhere from a few minutes, up to 20 minutes or so (occasionally longer). And then there is the aftermath of having the shivers. My body seems to convulse uncontrollably (but I am fully conscious and aware of it). My teeth often chatter. 

-YES, exactly @Scout the shaking & teeth chattering. 

I have tried it and noticed a pretty significant reduction in symptoms very quickly (within a few weeks) when I was able to commit to practicing the techniques every day. Better sleep, more energy, better HR, more positive thinking, overall just better than I have felt in a long time. I felt like it helped me start to climb out of the hole that I feel like I fell into with POTS. But the hard part is you have to stick with it, and I have 2 small kids and am in the middle of a move so getting time set aside every day has been almost impossible. I do recommend the program very much and I do hope to start back up once I'm more settled. I developed POTS suddenly during the third trimester of pregnancy 2 years ago, and am currently on metoprolol ER, and H1&2 for possible mast cell issues. 

I started having these attacks during my third trimester of pregnancy (the EXACT same symptoms), and that's when my orthostatic intolerance began as well. I really feel for you, I know how awful and scary they can be. After I delivered, I was put on metoprolol ER and although I still get these episodes, they are less frequent and less severe, HR doesn't get as high. I now only get 1 or 2 every few months (but it seems to throw my whole system out of whack for a week or 2 after). I have also been trying some visualization exercises to shift my attention when I get an episode and I think the distraction has helped to calm the fight/flight response faster. The normal EKG is good reassurance. 

I couldn't walk around my house without getting winded and lightheaded before metoprolol. I think it has been very helpful. 

I have had episodes like this too. EKGs always only show just sinus tachycardia. It really feels awful. It usually happens when I am in bed or resting and I get a sinking feeling then HR zooms up, feel like I'm going to die. I usually feel hot then cold and start shaking. (And have to use the bathroom). Episodes frequently happened after I did too much activity. I would feel like crap for days after too. I don't know what to make of them either.

I have gotten these delayed reactions after doing lots of physical activity (more frequently after doing lots of housework). I'll be resting and out of the blue HR will zoom up, chest discomfort, anxiety, weird breathing, diarrhea, excessive urination, feeling hot/cold, shaking. Feel bad that my house is such a mess most of the time but I'm afraid to clean! I also have not run on purpose (for exercise sake as opposed to "oh no I'm late for something") since I've developed POTS because I'm scared of what might happen, and I used to love running.