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@yogini - I am so sorry you had to go to the hospital! I hope all will turn out OK and they get the bleeding under control without a transfusion. --- I can see how reassuring it must be to come to the hospital in such a state and to be met with understanding and competence regarding POTS. Things are changing! Good job to the staff of your hospital, I hope this trend will spread!!!!!!! --- Best wishes, get better soon!

@toomanyproblems - hypoglycemia and glucose intolerance have been a problem for me since childhood, and both run in my family. So does POTS ( runs in the women of the last 3 generations ). I seem to get severe and sudden drops in blood sugar when I eat high sugar meals ( like pancakes with syrup ), with symptoms of sweating, hunger and weakness. When checked during these symptoms my sugar has been as low as 54. I know the symptoms and can stop the attacks right away by eating easily digested sugar along with some protein and carbs ( grapes or juice with peanut butter or cheese seem to do the trick fastest ). Yes, my autonomic specialist conformed that this is quite commonly related to autonomic dysfunction.

@Knellie - do you need a referral to see a specialist with your insurance? If not you can just schedule an appointment with an ENT or other specialist for the sole purpose of being tested for CSF leak. If you do need a referral I would make a list of all the symptoms you have that are symptoms of a leak, present them to your PCP to show that there IS a potential for a leak in your case and demand to be tested. For a doctor to refer you there has to be a valid reason - the more symptoms you can present the better the chance of getting referred. There has to be a need to rule it out. The same goes for any testing he may order - he will have to list a symptom or diagnosis that warrants the test in order to get the insurance to approve it.

@Heartbroken the fact that you have confirmed POTS and had 3 TTTs probably does not warrant another TTT, the diagnosis has already been made. With all of those diagnoses it WOULD be hard to pin point what is caused from what. EDS and Auto immune disease ( Hashimoto's ) can both be an underlying cause of POTS, but unfortunately both are chronic disorders, otherwise treating those could potentially improve POTS. Reactive Arthritis can also be an underlying cause for POTS, since the newest research found a strong link between auto-inflammation and dysautonomia. Although not directly diagnosed with reactive Arthritis I do have ALL symptoms of it, including general joint pain and swelling (especially in knees), chronic bladder inflammation ( IC ) and elevated ESR. Only recently did my autonomic specialist ( who is involved in studies to prove the link between auto-inflammation and POTS ) start me off-label on hydroxychloroquine and - tada!!! - the joint pain, inflammation, fatigue and many of the POTS symptoms have improved, including tachycardia, BP and low energy !!!!! The rheumatologist had refused it, he wanted me to use steroids, however every time I was on them I flared horribly to the point of hospitalization. But the Plaquenil worked. Maybe this information is helpful to you or your doctors since it is possible that treating the underlying inflammation ( that obviously id taking place in your body ) can also potentially improve many of your other symptoms. Before Plaquenil what helped me ( I can't take NSAIDS ) was Turmeric - a known and powerful anti inflammatory substance.

@CallieAndToby22 - most common causes for low blood volume is loss of fluid ( diarrhea, vomiting etc, ), actual blood loss or dehydration by not taking enough fluid in. it means that the FLUID in the blood ( plasma ) is too low, therefore the blood is too concentrated. Like chili - if you cook it too long and too much water evaporates it gets thick like glue. In some cases the body then thinks it is bleeding out and constricts all the vessels. In other cases the BP drops because the heart can't easily pump all of that "thicker" blood and the heart pumps faster to compensate. The way to fix or counteract ( and even prevent ) low blood volume is by replenishing fluids - whether by mouth or by IV. When someone pees as much as you naturally they will be loosing a of of fluid. To keep fluid in the blood vessels we also have to take in salt. With me the same happens that happens to you: if I drink tons of fluids along with salt I still pee it out and become hypovolemic. The only way it works for me is by getting IV fluids. Even NACL ( salt water ) infusions go right through me - for long lasting benefits I need Lactated Ringer's solution. LR seems to have a longer lasting effect on my HR and BP. Quote: Difference Between Lactated Ringers and Sodium Chloride | Compare the Difference Between Similar Terms "The key difference between lactated ringers and sodium chloride is that lactated ringers is a solution containing sodium ions, chloride ions, lactate ions, potassium ions and calcium ions whereas sodium chloride is a salt containing sodium ions and chloride ions." There is ample evidence in my medical history that LR helps me much better than NACL, and that oral salt and fluid replacement is ineffective. I am not sure if it is b/c of IC that I was diagnosed with long ago that causes me to urinate too much, or if it is because the high norepinephrine levels cause me to pee too much, or fo it is the combination. I know that whenever i get stressed or excited I urinate enormous amounts, constantly and too much to replace orally. IV LR stops all of that from happening, it controls HR, BP and urination. In a good week I can go up to 3 days between infusions and have minimal symptoms AS LONG AS I STAY WITHIN MY LIMITS.

Hello @Autonomic.heart - welcome to this forum! I am sorry to hear you are feeling so poorly. I have HPOTS for the past 12 years but I also have NCS ( neuro-cardiogenic syncope, another type of dysautonomia ). For me the biggest difference in symptoms from other types of POTS is the increase of BP upon standing, along with tachycardia. The first monitored episode of syncope ( I was wearing a monitor at the time ) showed a HR in the 120's for 3 hours before passing out, with a HR in the 180's along with a BP of 160/110. The BP was measured while I was out. I was diagnosed with TTT as well as resting and upright norepinephrine levels ( both elevated ). I too suffered from extremely labile BP. In HPOTS the BP often increases upon standing, and the lower number typically is very high ( diastolic hypertension ). A BP of 180/150, as you describe, would be dangerously high ( if it was taken correctly ). For me also the BP goes up and down constantly - when it drops too fast I pass out and when it goes up too fast I have autonomic seizures. The fact that you describe "anxiety" along with your spikes would lead to the suspicion of HPOTS. I always describe it more of a sensation of restlessness, excitement and impending doom rather than anxiety - I have had anxiety before but it is definitely a different feeling from what I experience from high adrenaline. Other symptoms to look for ( that are typical for HPOTS ) are cold hands and feet, tremors, yawning, chest pain and strong, fast heart beats - like your heart is jumping out of your chest. These are all symptoms of hyperadrenergic episode. Here is an article from our website that explains HPOTS, I hope it is helpful:

@Heartbroken- it is possible that the docs want to only look at the symptoms they KNOW, like SVT and atrial tachycardia. They might explain all your symptoms are from that instead of dysautonomia. Having diagnoses that they can treat often overshadows the necessity to deal with POTS. Since your last TTT was so long ago I would ask for another one, if you have worsening symptoms upon standing this test would be appropriate, no matter what the doc thinks. In POTS we develop sinus tachycardia upon standing - SVT or AT during it would not necessarily confirm a dysautonomia diagnosis. So as far as I know if you develop sinus tachycardia they would have to acknowledge POTS.

@CallieAndToby22 - whenever I have to have a - even minor - surgical procedure requiring anesthesia they bring me in first thing in the morning so I can get one whole liter of fluids prior to the procedure, and they keep me longer afterwards to receive more fluids. Doing so has minimized problems during surgery and shortened fares after.

@POTSie78 - our website also offers information on the topic of work and POTS and disability: Articles - Dysautonomia Information Network (DINET)

@Platypus - I had severe low BP during surgery from propofol, and they and to give me something to bring it back up. Anesthesia in general can mess with our ANS and unfortunately we never know which way it will go. I would definitely record your HR and BP and get seen if you have symptoms of passing out, chest pain or any other potentially serious symptoms. Otherwise I would treat it like a flare: a lot of REST and fluids.

Totally me back then! I worked for 4 years with severe HPOTS, despite passing out and having autonomic seizures frequently at work, and despite my family, doctors and employer urging me to "come to my senses". I had to keep cutting down on what I could do at work - less hours, less days, less active time ( ended up just at computer and still had episodes ...). Back then I thought ! could WILL myself through this, that it was just a matter of time before they would find the right treatment etc. And by pushing my body beyond what it was able to do I made the illness much, much worse. If I could do it all over now I would have stopped working much earlier, and possibly could have stopped it from getting this bad. But hindsight is always easy - when we are going through it acceptance seems like defeat.

@POTSie78 - I am sorry to hear all you have to go through right now. I was in EXACTLY your shoes! My employer had to let me go due to FMLA running out, I had short term insurance and then long term insurance. I also could not afford Cobra. I was the bread winner in my family and had my husband and daughter to consider - it was a nightmare! But in the end all worked out. --- You should not have to pay for the ILR ( I also had one of those ) since it gets paid in advance by your insurance. Have you looked into SSDI? When I got on LTDI they required me to apply for SSDI, and ( despite two denials ) it got approved. They want you to apply b/c when you go on SSDI they ( the LTDI ) no longer have to pay you. I went through all of this - if you end up going down that rad feel free to PM me, I might be able to help based on what I had to do. Hang in there!

@KiminOrlando - hot flashes and night sweats are two different things. I had hot flashes but also had night sweats, and they felt different. I never really felt all that hot when I had the night sweats - just really sweaty

@KiminOrlando - I get a similar sensation every evening, about 45 minutes after I take my evening meds. I will suddenly start sweating and can feel my heart pounding briefly, accompanied my a wave of nausea. Since for me it consistently happens after taking the meds I am pretty sure it is from that. But I do not get this when I take my morning meds, so I believe it happens because in the evening I am resting after the pills - in the morning I am usually up and about. I also know that there are 4 reasons for night sweats: hormones, medications, infection and menopause. If your episodes are not caused by medication - could it be one of the other causes?

@Heartbroken - well, he is actually right, trial-and-error IS the only way to go about finding the right treatment. As I had mentioned in a previous response - I too had to try many drugs that I was afraid of taking but I did so in order to define the cause of my POTS. In many cases a doctor is not able to exclude a group of drugs until you try them and can see the results of that drug. He is not pushing you to take the drug - that is good. And in the end he leaves completely up to you whether you want to try it or not - that is also good. He is saying that he does not believe there will be dangerous effects from this drug, so he recommended it after weighing the pros and cons. Personally I do not see a reason to not believe in this doctor simply based on the response to your letter. If you feel that he is compassionate, knowledgeable and willing to work WITH you in trying to find a treatment then I personally see no reason to switch. My autonomic specialist is one of the leading specialists and researchers in the field world wide, but even he had to admit that finding treatment is not clean cut, and that we have to try a lot of meds before we can find the right combo. If you decide to see him again I would schedule another visit ( or tele visit ), explain that you are not comfortable to take this med and ask for another option. That is how I do it with my doc(s) - I usually leave the office with a plan: "If I do not tolerate this drug what will we try instead?" - this way when I have to stop the drug I can call my doc and he will call in the alternative drug.

Hello @Kalt - welcome to the forum! If you type "Taurine" into the search bar it will bring up many older posts that have addressed Taurine, you may find some info there.

@Heartbroken - I too have HPOTS and NMS ( neurally mediated syncope, essentially same as NMH ). In my case I have both high and low BP, with low BP leading to presyncope and syncope and high BP so severe that it can cause seizures. Since the BP is so unpredictable it is very difficult to control this with medication, and I had to try many drugs before the right combo was found. However - after reading up on Northera I also would be hesitant to take it. It can cause supine hypertension, which some meds caused for me ( for example clonidine ). It pobably would be a good drug to take for NMH alone but I believe it should be contraindicated for anyone who has high BP ( as you do ). I agree - request another appointment or phone call to your doctor and ask him/her to explain what the expected outcome of taking this drug is, and why you should take it when you have periods of high BP. It is possible that your doc does not understand that someone can have two such completely opposite syndromes and therefore chooses to only treat the one. You are right in questioning this.

@Pietro - loss of circulation to the brain is a common cause of the symptoms experienced in POTS: brain fog, lightheadedness, fatigue - all symptoms that can stem from decreased circulation reaching the brain. No - there is no stroke risk involved since the blood loss in ischemic stroke is usually caused by a blood clot preventing blood from reaching a certain area of the brain. The symptoms in POTS are caused by not enough blood reaching the brain and therefore the brain is not receiving enough oxygen. I have a severe case of HPOTS and NCS ( or NMS ), and I experience a sudden increase in BP caused by vasoconstriction ( too much adrenaline ) which can cause so severe loss of circulation that I take seizures. It can also cause a sudden drop in BP which in turn causes blood pooling from vasodilation, in which case the blood flow to the brain stops and I faint. Both scenarios cause brain fog, fatigue and lightheadedness , and the low BP can cause tinnitus and vision changes associated with pre-syncope. Are you on any other meds that could cause this symptom? I am also wondering: if it only happens when lying down could it be a sudden drop in BP? Have you ever taken your BP and HR when this happens? It might shed a light on what happens.

@Pietro - I do not get the "zapped" feeling you describe, but I do get periods of tinnitus and other hearing related sensations when I loose circulation to my brain. It is caused - along with the dizziness - from inefficient circulation to the ear. This can be caused by excessive vasoconstriction OR vasodilation, in both cases there is not enough blood going to the head and brain, causing those symptoms as well as pre-syncope. This happens to my sister as well, and she sees her ENT for this. They give her IV fluids and the symptoms improve rapidly - because the fluids restore circulation to the ear and brain.

\Hello @Jyoti I have HPOTS and NMS, and I also have resting AND upright elevated Norepinephrine levels! I used to faint several days a week from NMS, and take seizures from HPOTS ( NMS = low BP, seizures = high BP ).

@CDNPortGrl - Lyme's disease is no laughing matter, but I am relieved to know you don't have POTS! I know Lyme's disease can mimic POTS, based on symptoms of tachycardia, fatigue, joint pains etc. And in many people once the Lyme's disease is properly treated ( assuming your body responds to the treatment ) these symptoms may improve. However - Lyme's disease is an infection that can trigger dysautonomia - so not in all people do the symptoms disappear with treatment of the infection. I know both people that recuperated fully from Lym'es as well as people that ended up with Dysautonomia triggered by Lyme's. But I agree - Lyme's disease should always be tested for when evaluating the causes for POTS-like symptoms.

Hello @Jaci! Yes, chronic pain CAN be a symptoms of POTS, but it depends what type of pain you experience. Many people get fibromyalgia-like pain with dysautonomia, and others have joint pain ( suspected to be of inflammatory nature ). When I became severely ill with HPOTS in 2009 I also started to have generalized joint pain. All of my joints hurt and were stiff and swollen. A rheumatologist checked me for unrelated AI disease twice, coming up empty. Last year my autonomic specialist stated that they now know that often POTS is linked to auto-inflammation ( not auto-immune ). He started me on Plaquenil ( hydroxychloroquine ) in January and my joint pains AND SOME OF MY POTS SYMPTOMS have greatly improved. --- So - if your pain could stem from inflammation it is possible to be connected to dysautonomia as well.

What is broken heart syndrome @racingheart77?

@LizS - this happens to me when my blood vessels dilate too much. And it is caused by the ANS. I suffer from HPOTS, and mostly have problems with severe vasoCONSTRICTION that causes cold hands and feet. But when the vessels suddenly release the spasm I experience red, hot hands and feet with prominent veins visible.

I agree, @toomanyproblems. They use an increase of BP upon standing for HPOTS diagnosis b/c the increase of BP is a sign of high NE levels, and the high BP is what differentiates HPOTS from other types of POTS.