Pistol

I write all of my symptoms down so I don't forget to mention any and I write down all questions I have. And I don't leave the office until everything has been addressed. Sometimes I warn the doc that I have a lot of questions so that they do not get stuck on any particular subject and waste time.

@aelizabeth3300 - I have hyperPOTS and what helped me with the attacks when I was still working was retreating to a dark, quiet room and lying or sitting down and doing deep breathing. That was the only way I was - sometimes - able to stop the episodes and to prevent syncope or seizures ( an extreme reaction to adrenaline rush ). Also - in addition to cardiac meds - Lexapro helped. I have a sister that also has hyperPOTS and she does well on Wellbutrin.

I was called once and told them that I am housebound due to chronic illness and that was all I had to do.

Hi @gossamer4448 - hyper-POTS is diagnosed by symptoms and neurotransmitters ( resting and active, anything above 600 is considered abnormal ). The symptoms differ from other types of POTS due to the BP elevation, mostly diastolic hypertension ( the lower number is elevated as well as the upper number, i.e. 150/100 ). Typical symptoms are tachycardia, tremors, chest pain, cold hands and feet, brain fog and even confusion, cognitive issues, often headaches, in some cases fainting. A hyperadrenergic storm in my case presents with excitement and nervousness, shaking uncontrollably, blue lips, cold hands and feet, inability to find words or speak, extreme chest pain and hypertension. Often it ends in syncope or an autonomic seizure. Imagine if you are racing to get someone out of a burning building and your adrenaline is in overdrive. Then - when the fire is put out and all is over - you are sitting down and all that excess adrenaline is still in your system and you start shaking as if you are going into shock - that is what it is like. Fight-or-flight response - there just is no burning building, no cougar threatening you, no gun held to your head. Just a normal moment in every day life and this can happen.

@Meemee - have you taken your BP when you feel like that? It sounds like it could be your BP dropping. I too reach my limit around 7 pm every evening and often go to bed at that time.

This may be due to Klonopin but I would like to add that I have hyper-POTS and in times when my adrenaline levels are out-of-whack and I am constantly in overdrive I also experience episodes of irritability and agitation. This also happens after I had a seizure or faint - I was told this is a symptom of cerebral hypoperfusion ( not enough blood flowing to the brain ). I am not sure if this is the case for you but wanted to mention it.

When I was the most unstable I also could not sleep more than 3 hours in a stretch b/c the adrenaline level did not go down to cause REM sleep. Once I found a more balanced way of life through meds, exercise and rest periods I now sleep well most nights. The nights I do not sleep well - mostly due to overdoing things during the day - I use Benadryl or Ativan and this seems to help well. You mentioned in another post that you are mostly bedridden - core exercises before bed ( lying down ) help really well, also leg exercises. They also help with training the larger muscles necessary to help balancing the cardio-vascular system. Bedrest will make EVERYTHING worse, including the ability to find restful sleep.

Unfortunately the temperature intolerance is one of my biggest problems. In the winter I cannot go for walks b/c of the cold which triggers my symptoms, and in the summer it is the same with the heat. So I stay mostly indoors in the extreme temps and exercise there but in spring and fall I start to walk outdoors daily, every day a little more. I also are unable to sweat ( which makes hot flashes - I am of that age - unbearable ). I constantly put on or take off my clothes as well and use cooling itmes in the summer. I find fans very effective.

@Derek1987 - I was exactly in your shoes. When I realized that my condition is genetic, chronic and progressive and I became disabled I thought my life was over. However - with the help of my extraordinary PCP as well as my superb autonomic specialist I am now capable of a much better way of life DESPITE my illness. But it took many years of fighting, trying different meds and learning how to know my limitations and to live within them. Once you no longer have to work and push yourself every day you can learn what your limits are and then somewhat train yourself to coax the most out of them. Also - there are many medications that help but you have to find the right ones. In my case that meant going through a lot of trial and error - but it was necessary to find what makes me better today. You are still just in the baby-years and there is no reason to think that you re done. But you cannot give up and stay in one place. We have to move, in however small increments, and keep being active. What you find unreachable today may very well be your worst in the future. At least that was the case for me. Before giving up I would go to Vanderbilt since you live in TN and since they know a lot more about your illness and your options. You might be surprised what you can do with the right treatment. BTW - I also have the form of POTS your psychiatrist is referring to and I have come a long way. Hopefully you will too.

Throughout the years of dealing with POTS I have noticed that MOST cardiologists and EP's do not want to deal with POTS. They would have to re-think their whole way of approaching their field of expertise. Out of 5 cardiologists I only found one that was willing to acknowledge that I have POTS ( this was prior to diagnosis ) and he admitted that he did not know how to treat it. After diagnosis by a renowned autonomic specialist I had to find a local cardiologist as well and went back to him and he has been very willing to educate himself and work with my specialist. He actually sees other POTS patients now - I hope he will decide to specialize in that field. He is very good. He also told me that at most cardiology seminars the docs tune out and even leave the room when POTS is brought up - they do not want to touch it. That is why I believe the cardiologist you saw told you what HE believes is true - that there is no cure and you have to "just deal with it". That is untrue. There are many meds as well as other treatments that can help - but it is a long road to finetune the correct meds, since there is no one-fits-all treatment. It is frustrating for both physicians as well as patients and most docs will not touch us for that reason. So - keep looking. I was fortunate to have an extremely compassionate and good PCP who stood by me when the cardiologists sent me away. You just need ONE good one to make it through this ordeal - so keep looking!!!!

@Stark - I was tested for MCAS and was negative. I was told the runny nose stems from the ANS being stimulated.

@StayAtHomeMom - to answer your question: yes, every one affected has hyper-POTS with syncope and BP fluctuations up to hypertensive crisis. I am the only one that takes seizures from the high BP. We all are taking the same meds ( Carvelidol and diltiazem ) for BP but I take a lot of other POTS meds as well. My nieces ( between 20 and 29 ) do not yet have the severe hypertension but they have the syncope, fatigue, orthostatic intolerance etc. They all started in their teens, as did I. Also - my mother and sisters became severely symptomatic in their early 50´s and I at 42. It seems to be tolrable until then, not sure why. In my case it was not related to menopause but with the others it could be. We are all unable to work witout restrictions ( I am disabled ) and we all are very much limited in what we are able to do in a day. I have 2 brothers and 2 nephews, neither of them have it, seems to only affect the females.

@sunflower15 yes, I had these spikes in the past. This needs to be brought to your doctor,s attention right away since it can be serious if not controlled. I was put on medication that helped. Do you have any meds prescribed for these situations, on an as needed basis? If not please contact your doctor and make him/her aware.

@aljanny - I suffer from BOTH hyper - and hypotension. Problem is that I feel great with a low BP ( even as low as 80/40 ) but really mind high BP ( often become symptomatic at 140/100 and pass out or have autonomic seizures anything over 156/110 ). This has been documented all over my medical record. Most of my family has hyper-POTS and we all have these fluctuating BP`s although I am the only one with seizures from high BP. I am currently well controlled with meds and IV fluids and my BP's have been regulated in the mostly 110/70 range with just occaisional spikes with activity. I have also noted that when I was not regulated my BP's would fluctuate from one minute to the other, I used to have them measured several times at the doctors office, like 4 times in one visit, and all were completely different. Today they are pretty stable.

@Meemee - I have hyper-POTS and also struggle with temperature intolerance and fluctuations. When it is cold outside ( I live in the north east ) I have to stay indoors or immediately turn freezing, with ice ocld feet and hands that are difficult to heat back up. If it is warm outside I can only tolerate a few minutes until I feel like passing out and need to go inside. Cooling supplies such as cooling packs or collars have been helpful in those times. I also do not usually sweat at all unless i am close to passing out or have hypoglycemia. My temperature also fluctuates and sometimes I feel exactly like I have a fever but I have no elevated temperature. Go figure! I have not yet found a way to improve this symptom except to avoid heat/ cold.

POTS runs amok in my family - all women have it, 3 generations. My now 14 year old daughter has been showing strong signs of it ( tachycardia, presyncope, low energy at times ) and I had her seen by a pediatric cardiologist as well ( who said she was fine ) and a halter monitor showed "just tachycardia". I have had hyperPOTS for 10 years and mine also "only" shows tachycardia. The trick is that they need to take into consideration that the "just tachycardia" occurs simply when standing. I am going to have to wait until she becomes more symptomatic until I can have her seen by an experienced specialist. Good for you to keep at it!!! I have found that in my family the earlier my nieces and sisters got specialized care the better was their chnace of leading a less limited life. In my case I was already older and had severe POTS symptoms and also had had symptoms in my teenage years that were never addressed. My opinion is that if Teens get diagnosed early and get into specialized care right away ( and with the minor advancement in POTS treatments ) they most likely have a good chance of being less affected by it than we. At least that is my hope and theory. I wish you and your son(s) the very best!

Yes - discard the first urine on the morning of the day you start the collection. Then collect everything INCLUDING the urine of that morning until the time you initially started the collection.

@joiedevivre - I was on Medicaid and tried to get my out-of-state specialist covered because there was no specialist for POTS in my state but they refused and I had to pay out-of-pocket.

Hello @CallieAndToby22 - I also have IC and hyper-POTS. Whenever I overdo things and get as bad as you describe the only thing that turns things around are IV fluids. I used to go to the ER when I would be that bad or my doctor would give me standing order and I could get them at an infusion center. Some walk-in clinics can also administer IV fluids. Recommended per literature is 1 l NSS over 2 hours or slower.

Dear @Conrad_hemsley I am so sorry that you are doing this poorly. First of all: do you see an autonomic specialist? I would call him as soon as possible and inform him how bad your symptoms are. Second: why are you hesitant to take your medications? I would take the propranolol or Ivabradine as directed by your doctor. It is important to take the medications exactly as prescribed. Dysautonomia is an imbalance and the goal of the medications is to establish balance - but you have to take them. If your doctor ordered to take them as needed then this certainly is a time when you need them. If your doctor ordered them daily then the fact that you do not take them may be a reason why you are this bad? When I was this bad I was always given IV fluids and that helps me greatly to stop the surges and to normalize HR and BP. Also make sure you increase your fluid intake and salt intake. But - again - please see your physician ASAP so you do not have to suffer like this any longer. Best of luck to you!!!!

I am sorry that you feel that way. Yes - dysautonomia is not curable but the symptoms of it can be relieved in many cases. My doctor and I address each symptom as it appears, may it be GI related or pain or BP/ HR. I also suggest to see your doctor about this problem. Best wishes!!!!!

Update: just survived the flu ( type A ) without a major flare … just my weekly fluids and rest. In the past this would have landed me in the hospital FOR SURE … and then I would have to spend weeks to recondition. Another win for long term fluid therapy for POTS!!!!!!

I used to get readings of up to 160/110 when standing up with HR 120. I also frequently would pass out or have seizures when my BP and HR went up like that. Beta blockers ( particularly Carvelidol ) and a calcium channel blocker ( in my case Diltiazem ) helped a lot, The Carvelidol seems to control the HR and the Diltiazem controls my BP by dilating the blood vessels. I have hyperadrenergic POTS which causes the blood vessels to constrict. Most POTS is caused by the opposite - excessive vasodilation and this case needs different medications. I have a type of POTS that causes both high AND low BP but the many meds I take seem to control things pretty well. Since I started weekly IV fluids oddly ( but thankfully ) my BP and HR have been stable.

Bloating can cause shortness of breath by confining the diaphragm and therefore making it hard to take a deep breath. I get short of breath when my POTS gets worse and I was told that this is part of the body trying to raise the O2 levels - I also yawn a lot when this happens ( another attempt by the body to raise oxygenation ).

@Derek1987 - I drove 9 hours one way to see someone in Vanderbilt and now drive 8 hours one way the other direction to see my current specialist. I truly would go for referral as soon as possible to get checked out by them, especially since you have only tried one med and especially if you are trying to eventually get SSDI. You have to prove to them that you tried everything to get better. The autonomic clinic at Vandy sees people like us all day long and know what they are doing. There is a big chance they could improve your life greatly with proper medication. Best of luck!!! BTW - has your doctor considered Modafinil ( Provigil ) for your fatigue? This is a commonly prescribed medication for POTS and has helped many with the symptoms, especially the fatigue. It was prescribed for me but I could not afford it so I take Ritalin with good results.