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I am glad you at least got a diagnosis. I had to see an autonomic specialist out of state to get proper treatment. Good luck!!!!

@RecipeForDisaster - does your insurance require a referral? You can request a second opinion, every insurance is obligated to provide this. With a positive ANA, symptoms and having seen only the one rheumatologist you can either explain this to your PCP and demand a second opinion or - if he/she refuses - you can contact the case management department of your insurance and explain the your situation and that you need a second opinion. They can recommend someone or help you with the process.

@WanderWonder - This happens to me during allergy season and also gets worse when lying down. I believe it is due to the pressure in the sinuses changes when we are lying down. It improves as soon as I sit up. However - when allergy season is over or I take antihistamines the problem is not there. Have you tried saline mist or a thin layer of Vaseline around the rim of your nostrils? This was recommended to me by my ENT to keep my nose from drying out too much.

Hi @lattegirl - prior tp passing out my heart starts beating hard and fast, I hear and see differently, I get cold hands and feet, people tell me I turn white and get a blank stare right before I go out. When my sugar is low it starts slow with feeling hungry, becoming increasingly weak, shaky and - most noticeable symptom - I start sweating. If I let it go I end up so weak that I cannot move but I don't let it get that bad anymore. I immediately drink juice, eat grapes or a spoonful of honey followed by cheese and crackers. I always keep these items on hand.

I also would like to point out that when we use any monitor to check our HR we are acutely aware of changes in HR or BP, even when they are happening normally in others that do not monitor their numbers. It is very important that we check our Vital signs when we have SYMPTOMS. Fluctuations are normal in all people.

We should always be our own advocate because there are so many uninformed and/or ignorant physicians when it comes to dysautonomia related issues. I also had to deal with several physicians ( including university cardiologists and EP's ) that misinterpreted my TTT's and told me it is "all in my head", despite the obvious facts of the numbers on the TTT's. I did not find proper diagnosis and treatment until I saw (after 1 year waiting period) an autonomic specialist. In my case I fired all of the incapable docs and stuck with the ones that listened to me ( mostly my awesome PCP ). Dysautonomia is not a mathematical equation where you strictly go by numbers, especially if the numbers add up. IMO any doc that does not consider the whole patient, numbers and symptoms and all, is not capable of giving a correct diagnosis.

@Jwarrior77 - sounds like it could be excessive vasodilation. This happens to me sometimes.

@lattegirl - I have VVS and hyperadrenergic POTS. When my BP drops I pass out and when it goes too high I take seizures ( all caused by inadequate circulation to the brain ). In either scenario I can experience periods of confusion, loss of speech or very fast speech after becoming conscious again. Sometimes this lasts a few minutes and sometimes as long as a few hours, in my case it depends on how severe and how long the loss of cerebral circulation was. I also have reactive hypoglycemia (also caused by dysautonomia) and when that happens ( I can absolutely tell the difference between being presyncope from POTS or from hypoglycemia) I normally return to normal as soon as my blood sugar goes back up. I agree that coke is not the best option for low sugar - I usually have to take a fast-acting sugar (such as grapes or orange juice) and a carb or protein to keep the sugar up once it is normal again. IMO it appears that you may have been pre-syncopal and your body was not able to adjust as fast as you wanted it to. Normally - in my case - I have to lie down and recouperate for a while after an episode.

@Miraclemaker11 - I wonder if it could be that the low BP causes the body to dump out adrenaline in order to bring the low BP up and that causes the surges? That could mean that increasing the BP potentially could prevent the surges? I was born with oversized RBC's, it runs in my family ( so does hyperadrenergic POTS ), it shows up in every CBC. And there is a study out there that mentions this as a potential cause for POTS since the body believes that we do not have enough blood ( because the blood is "thicker") and as a result it constricts the blood vessels, like in shock or sudden blood loss. This is due to high adrenaline output, also as in shock. I also get Lactated Ringers as my IV twice a week. Essentially it is higher in electrolytes than Normal Saline and increases the volume more, that is why they prefer it to be given during surgery over NSS. Personally I have seen a longer lasting effect from it than Saline, that essentially just runs through me.

@MTRJ75 - I believe the specialists are working hard on finding an "easy-out" for us, but medicine is just not there yet. I - for my part - am thankful for all progress they have made thus far.

Dear @ANCY - first of all I am very sorry you have to endure all of this. I cannot really advise you on what is right for you, since you are going through extremely complicated issues, but I can tell you what I - personally - have learned. I too have extreme swings in BP. I also will go extremely high when my dysautonomia gets triggered, and having sepsis etc is a definite trigger. Having all of those changes in medications can also trigger an extreme reaction of the ANS. For me changing, adding or stopping meds (even just ONE at a time) can send me into chaos. Having to go through such an extreme change - and introduction of new, emergency - medications most likely could explain why you are so out-of-control right now. What has helped me in the past in similar scenarios was to find the happy medium - some med combo that seems to keep me at a reasonably stable point while in bed - and then start from scratch. I mean - start from getting up even seconds at a time and then recondition slowly. You know what I mean, I am sure you have had to go back to square one many times. Even in normal people pain can easily trigger hypertension. Yes - I get highs and lows, especially when in a flare ( or storm or exacerbation or whatever they want to call it ). Even when well I can go up and down, but when I am stable I run low, and feel great when it is low. Based on my own experiences I can only tell you that - especially after such a traumatic event on your body - it takes time, patience and the willingness of your physicians to be careful with changing your meds in order to get back a degree of balance. My heart goes out to you - hang in there!!!!

Hi there @WanderWonder! Most likely - unless you do your homework and find a physician experienced in treating dysautonomia - you may not get proper treatment. Many cardiologists are not really trained in this area of expertise. I myself (have a renowned autonomic specialist out-of-state) researched my state's university hospital and found a cardiologist local that is willing to work with - and educate himself about - POTS patients. This way I do not always have to drive 9 hours one way to be seen by the specialist for every skipped beat 😀! -- You are 28, so you probably should be evaluated for dysautonomia IMO. Many physicians think that POTS is something we can grow out of ( because some teens do ) but depending on severity of symptoms and age of onset this is not always the case and we may need medication in addition to all other self-treatments. It is common that EKG, Echo, monitors, labs etc come back normal b/c it is not a malfunction of the anatomical body (however not to be confused with a psychological issue either). Personally - having been in your shoes - I would push for autonomic specialist referral. I did my own research, printed out all applicable studies or articles, presented them to my PCP and - being in agreement b/c he is awesome - he referred me to my specialist of choice. It took 1 year to get in but it was worth it. Best of luck - feel free to PM me!!!!!!

@Derek1987 - you ought to see a video of my cat playing with my daughters guinea pig …

That is because IV fluids immediately improve the fluid balance and calm the ANSs attempts to regulate by over- or undercompensating. Oral fluids are not enough to do this, they can only help to prevent this from happening, not enough to stop it. Unfortunately there is no better way to give fluids than IV and that has risks with it, so physicians do not encourage routine IV fluids, just in severe flares. The good thing is that now you can proof how effective they are for you and can ask for them in the event that you have another flare ( which I hope will not happen ).

Hi @Jwarrior77. Sorry you are having these issues. Neurological problems usually cause a difference in pupil reaction in ONE eye, as long a they both react the same ( however randomly ) is good. I am glad you are seeing an optometrist and neurologist soon. Best wishes!!!

Dear @WanderWonder - first of all: WELCOME to the forum. What you describe does sound like what many dysautonomia sufferers experience. Being your physician has not diagnosed you might want to do a poor-mans-tilt at his office, meaning taking your Vital signs lying, sitting and standing. Here is a link on how to do this ( from the dysautonomia project web site 😞 https://www.youtube.com/watch?v=9Z3UcQR5Ss4 This sounds like what happens when I get hyperadrenergic symptoms, meaning the norepinephrine levels get too high. The pounding and headache - for me - is usually caused by a sudden jump in BP. The fact that it happens after you eat points to that also. When we eat the blood goes to the abdomen to digest and normally causes a drop in BP, but in many dysautonomia patients this initial drop is followed by a spike in adrenaline as a faulty attempt by the ANS to counteract this drop. Since you do not have a specialist yet it may be helpful to review our physician list under the physician tab of this site, you may find someone close to you ( unfortunately most of us have to travel quite a distance to see someone specialized or even experienced in dysautonomia ). You can also ask your doctor to refer you to a cardiologist. In the mean time what helps many people that have not yet been officially diagnosed is drinking lots of fluids, increase your salt intake and compression stockings. All of these things could help increase your already low BP also. The fact that you exercise regularly is very good, keep that up!!!!

@WanderWonder yes, this is not unusual. My HR fluctuates that way also. As long as it goes back down and the sinus node resets itself.

Sorry to say but your doctor is actually right. My specialist only would prescribe weekly IV's when I was extremely ill. I used to be in hospital for IV fluids every 6-8 weeks for years, despite getting them scheduled for flares. It was b/c getting the IV fluids over just 2-4 hours was never enough, I needed them overnight in order to see lasting results. Current consensus is that the risks of regular IV fluids ( bad veins etc ) are too high if someone can take fluids in orally. Unfortunately in my case I ended up having autonomic seizures and syncope so often that finally my docs agreed to a port and home infusions. My sister also has POTS and gets infusions at her PCP's office during flares but her veins are suffering. You mention urinating a lot - have they tested your RAAS and ADH ( Anti-diuretic hormone ). These - of not normal - can cause havoc with your fluid balance and in return cause autonomic symptoms. I am glad that you are feeling better and hope it remains that way!!!!!

@MTRJ75 - prior to beta blockers, calcium channel blockers and other cardiac meds I had bigeminy, trigeminy, couplets, triplets ( all patterns of extra heart beats ) all of the time. With proper medication as well as extra fluids/salt etc it all improved. Yes - these extra beats are common in POTS. Glad you had them figure it out!!! Good luck.

@Marabi - yes, it is POSSIBLE to have a better quality of life, but you need to be seen and treated by an autonomic specialist. Here are some questions I have about your post: Have you been diagnosed by someone knowledgeable about dysautonomia? Have you had all of the proper testing done? Nutritional deficits such as Vit B12, Vit D3 and folic acid deficiencies can contribute to dysautonomia. Are you taking the recommended medications for MCAS, such as H1 and H2 blockers? Have you seen an allergist? Yes, it is - with proper treatment. Our website has a listing of dysautonomia experienced physicians all over the world under the physician tab - you may find someone close to you that you could see. Best of luck - don't give up!!!

Yes - they are esophageal spasms from reflux. They do not hurt but feel like palpitations that are not in the heart area.

@Random-Symptom Man - I am not sure if this subject is concerning Dysautonomia but … I am no longer ticklish. I used to run just from the mere threat of someone ticking me - but today I can turn it off and on. Actually - I would have to work really hard to have someone make me giggle from being tickled.

@jeff_jefferson2 - I am not sure if this is what you are experiencing but I get esophageal spasms that at times feel like palpitations. Sometimes I can only describe them as "Hick-ups" in my chest/throat area, definitely different from actual palpitations.

My POTS journey was a lonely one, since no one knew what was wrong with me at first. After years of seeing numerous physicians, several tests, facing disability issues and loosing my job and endless hours spent online researching my symptoms the only people I had to help me face this monster were my PCP and my autonomic specialist. I felt lonely and depressed, especially since there was no other person I knew that felt like me, even my friends and family could not really understand what I was going through. Then one day I came across Dinet and the rest is history - I finally belonged!!! No words can describe the relief that I felt simply by being understood, believed and validated. All the frustrating and odd things that come with dysautonomia and that had separated me from others suddenly were "normal"!!! Just sharing what it is like was as if a burden was taken off my shoulders, and slowly I realized that I not only can gain from the Forum but also am able to give back!!! Today I am a moderator on this wonderful forum and have made many friends as well as knowing there is always someone here that gets it - even if the issues are strange, difficult or painful to talk about. I can weather the saddest moments, celebrate the smallest victories as well as laugh about the funny things we encounter in the daily struggle of living with POTS. And that is a wonderful thing. Whether donating time, money or simply sharing your story - it is all appreciated!!!!!!!!!!

@Scout yes, I too am always cold, even if everyone else in the room is hot. In my case it is supposedly due to excessive vasoconstriction, and yes - I too get bad when it is too warm for my delicate temperature tolerance ( 72 - 78 degree F ) … I always have a large wrap-around shawl with me that I can put on and take off easily, even in the summer. How nice that you can make your own!!!!