Pistol

@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!!!!

@cleo - a month ago I had my old port removed and a new one inserted in one surgery. I was left with 3 incisions, all of them had internal stitches and 2 of them had external stitches as well. There was a LOT of itching going on but no major reaction. I am also hyper-sensitive to meds as well and I have an allergy to adhesive tape, so triple-threat. All went well, I survived just fine.

Hi @MTRJ75. Yes - I have a similar occurrence that feels as if there is something stuck in my lower throat. I have GERD, so I assume it is due to that. However - Sjogren's could cause this as well, IMO. When I get palpitations I check my pulse and can determine that they are PVC's but sometimes I get palpitations and my pulse is completely regular. I was told that these sensations are not extra systoles but rather esophageal spasms, which also can cause a "lump-in-throat" feeling ( called globulus ). I am not sure if this like what you are experiencing but I thought it could be?

@Linz1501 - I have hyperadrenergic POTS with BP and HR readings as well as symptoms very close to what you are experiencing. I had 2 Tilt table studies in the past, one showed neuro-cardiogenic syncope and the other one showed POTS ( although misdiagnosed by the performing Electro-physiologist ). According to many autonomic specialists the TTT is NOT the golden standard. I would see an autonomic specialist for the symptoms you are having. It is common practice to be evaluated by an EP or cardiologist for the symptoms you describe, you should always follow your PCP's suggestions. Most people on this forum have to see specialists such as EP's for our symptoms. A normal TTT does not mean that you are not having symptoms - it may just have been a good day.

Hi @Miraclemaker11 . I have hyperadrenergic POTS with both high and low BP. There are different mechanisms in POTS but I was explained that is mostly due to autonomic tone, which means how our bloodvessels constrict, and that is controlled by the ANS. Low Bp usually means dilated blood vessels. which can have several different causes. It can be from low volume, vessels that are too flexible ( as in EDS ), sympathetic withdrawal etc. In all of these cases the heart itself is normal, meaning that it is not a "weak" heart muscle causing the low BP. High BP is usually caused by vessles that constrict too much or too long, like in sympathetic overstimulation ( high adrenaline ), abnormal response to low volume or even ( in my case ) having red blood cells that are too big, causing false low volume which in turn causes sympathetic overcompensation. In these scenarios the heart is also perfectly normal in itself but CAN become affected by the abnormal BP's. As you see - dysautonomia is a complicated thing!

I agree with the others. Colace works well and adding fiber to your diet ( or via supplements ) aids in regular movement. While I believe that laxatives per-se are not really contraindicated with POTS - the resulting diarrhea may trigger symptoms.

@targs66 - I am sorry to hear your having these abnormal findings. I can tell you that- according to what I have read and was told by my doctors - normally people with dysautonomia have functionally sound hearts - usually nothing is found abnormal with the structure or functioning of the heart itself. However - this does not mean that the symptoms of dysautonomia cannot lead to problems with the heart and of course you can have heart muscle issues that are unrelated to dysautonomia. I am sorry that you have such horribly low BP - when mine goes below 90 I feel like a wet, wrung-out rag. Since you have low readings most of the time it has to be dreadful to deal with. Has your cardiologist ever suggested or tried meds that can increase BP?

Well - it is that time of the year and I can already see the stress building up to a flare. So I just wanted to remind everyone to remember our limits when dealing with the many challenges of celebrating. For me it is the following: - being active, cooking, talking, eating - these are all triggers for me. Making sure to be able to retreat and rest at ANY time has been a necessity for me. - remembering to drink fluids is difficult when being busy, so I ask people to remind me throughout the day. - eating a large meal will definitely trigger an episode, so I pick on food all day long and keep my plate small. - getting together with family and friends can be extremely stressful - if around people that are not familiar with my limitations I (or my husband) explain in advance that if I excuse myself it is not because of rudeness but rather to be able to continue the day. - sometimes we may have to pick and choose what we can do, i.e. "Can I make that pie AND eat it?" I had to bake 2 pies yesterday as my contribution to the gathering and promptly passed out. Sorry to say but thankfully my family is traveling to get together with my husbands family and I stay at home ( since I do not travel well). So I get to recuperate. Otherwise I would not have been able to bake anything. - In the end what matters is to remember what we have to be thankful for. Despite the challenges we face every day there is so much to enjoy, look forward to and celebrate. HAPPY THANKSGIVING!!!!!