Pistol

After a few years of stability today I was hit with a flare because I missed one of my weekly infusions. Everything was fine until .. well, until I hit a brick wall. Palpitations, shortness-of-breath, no energy, can't get off the couch and can't even read or watch TV. I had to cancel a dinner. The friend asked "Well, what is wrong?" I answered "It is my chronic illness". You can imagine the response. So I am trying to put it simple but just could not. Is it the brain? Then I am crazy. Is is the heart? Then I should see a better cardiologist. Is it a BP problem? Then I need to eat less salt. Is it my nerves? Then I should see a therapist. UUUGGGH! Even after soooo many years of dealing with this, and having conquered a lot, I am still hitting a wall when I have to tell people why I cannot function when in a flare.

@Tdg4 welcome to the forum! You have an interesting question about PTSD, Trauma and dysautonomia. I have HPOTS ( thought to be genetic since it affects women in three generations in my family ) as well as PTSD and ADHD. I have underwent extensive neuro-psychologic testing, am currently and have been in counseling for the PTSD. I also was positively diagnosed for POTS with lab tests and TTT. The neuro-psychologist states that my symptoms are NOT related to anxiety or trauma. I went through a rough time emotionally a year and a half ago but it has not affected my POTS, or worsened the symptoms in any way, neither has the therapy. However - therapy for PTSD can be very scary and stressful since the goal is to have you come to terms with the trauma and learn healthy ways to deal with it. This will trigger the trauma recall and the pure stress of this can potentially trigger an abnormal autonomic response, as ANY stress can. What is always best when going through a flare is ample rest, mild exercise and lots of fluids, as well as good self care and diet. To most breathing exercises can be helpful, your therapist may be able to teach you some. Be gentle with yourself, and talk to your therapist about your symptoms as well as your doctor. Let us know how you are getting along - be well!

@Sea otter Sadly many of us here have been in your shoes. IMO some docs dont "believe" in POTS - or other dysautonomias - because it challenges all science they were taught. My first diagnosis was NCS - and even after passing out during my firstt TTT the cardiologists were very dismissive. " Its called the common faint" is what I was told. Drink more. Despite me having tons of witnessed ( at work in a hospital ) syncopal episodes and even seizures I was sometimes told that I am "making it up to get attention". Even after some of these were caught on halter monitors and my HR and BP were taken right away, often both sky-high. When they caught an event on EEG and telemetry while hospitalized in an Epilepsy monitoring Unit and it showed seizure from decreased cerebral perfusion due to vaso-constriction still some docs said that they do not believe in POTS. I was eventually diagnosed by an autonomic Specialist who even did blood work to check Norepinephrine levels and proved the diagnosis of HPOTS. Still - there are sceptics. So what I learned is - fire the ones that do not know what they are talking about, and the ones that don't know how to help - and keep the ones that understand your symptoms and are willing to take on the frustrating ordeal of finding the right treatment. Just because it is called an invisible illness does not mean it is not real.

@KristieL Welcome to this forum! I am reading your post and am wondering about you mentioning low BP and high HR - in order to meet POTS criteria there has to be a sustained increase in HR WITHOUT a drop in BP. Here is an excerpt from this article https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8920526/#:~:text=To diagnose excessive orthostatic tachycardia,the readings taken when standing. To diagnose excessive orthostatic tachycardia (required for POTS), patients should have a sustained heart rate increase of at least 30 beats/min (for adults) or at least 40 beats/min (for patients aged 12–19 yr) on at least 2 of the readings taken when standing. The systolic blood pressure should not fall by more than 20 mm Hg. If your BP falls more than 20 mmHg upon standing you may be affected by orthostatic hypotension instead of POTS. Have you had a TTT?

Research, venting and good self care!

@Sarah Tee No, I started on 200 mg and did very well with it. I never had any issues with it at all. I did suffer from joint pains ( but Plaquenil was not prescribed for these, it was ordered for POTS ) and I noticed improvement of those after about three months. Which is supposedly the time it takes for it to take effect anyway. I think we need to build up a therapeutic level of it before it starts working. Strangely - I stopped the Plaquenil a year ago and the joint pains never returned!

@MaineDoug That is medical negligence, for sure! Even if the finding was incidental ( since they did not really test for it ) - any abnormal result or new diagnosis MUST be addressed in the discharge instructions, whether it is a follow-up with your PCP, a referral to a specialist or further testing. The doctor also HAS to make you aware of the result. I am furious that you were so badly treated, and that your health suffered from it. Gladly the new med may give you some improvement.

😊🤗🥳 So happy to hear! Best wishes to you!

@Sarah Tee Reduced cerebral circulation can be caused by several reasons: it can be that the blood flow to the brain slows due to vaso-constriction, too low BP from vaso-dilation or low blood volume. IV fluids usually help in all of these scenarios, albeit sometimes only temporarily. For me HPOTS causes the blood vessels to constrict and more pressure is needed to pump the blood to the brain. IV fluids help in that by creating an even pressure within the vessels and this reduces the ANS to produce Norepinephrine to constrict. For example: if I go into a crisis with high HR, high BP and tremors it is caused from adrenaline. IV fluids counteract by creating an even pressure which in turn reduces the sympathetic over-compensation and things calm down. If the blood vessels are too dilated ( often in EDS ) then the ANS tries to counteract by increasing HR to pump more blood to the vital organs, and may dump adrenaline to constrict the vessels. IV fluids will help by creating an increase in the pressure within the vessels. And if there is low blood volume of course the ANS will need to increase constriction of the vessels and increase HR and pressure to pump enough to the organs. IV fluids here can help simply by increasing the volume within the vessels.

@Caterpilly I have heard that sooo many times! I even had an EP once tell me ( after he did my second TTT ) he thinks POTS is a fashion diagnosis and because it is so new and the symptoms so vague everyone wants to have it now. Another Doc told me he does not believe in IV fluids for POTS because POTS is a psychological condition. I think that some doctors simply dont want to admit that with dysautonomia they have to rethink everything they learned in med school!

@MaineDoug I am glad everyone was watching out for you, and I hope the new med will finally bring you some improvement!

@KateN I did more research and found this article So https://pubmed.ncbi.nlm.nih.gov/20055263/#:~:text=Pineal cysts usually have no,oculomotor disturbances%2C and obstructive hydrocephalus. Here it mentions this: "Pineal cysts usually have no clinical implications and remain asymptomatic for years. The most common symptoms include headache, vertigo, visual and oculomotor disturbances, and obstructive hydrocephalus." So, IMO the symptoms caused by the cyst can mimic Dysautonomia, since headaches, vertigo and visual disturbances have all been reported in dysautonomias. However, I will have to look into it further to make sure my theory is correct!

@KateN Welcome to the Forum! I have not heard of pineal cysts being connected to dysautonomia, but I would assume that the discomfort from it could cause you enough stress to have a flare-up of symptoms if you already have dysautonomia. There are many factors that can cause us to flare - pain and discomfort are one of them.

@Sarah Tee Good for you for staying the course so far. I took Plaquenil for a year ( 200 mg ) and never had any side effects, luckily, despite being extremely medication sensitive. It is not supposed to really kick in until about three months after you start it, so hopefully ( especially since you started at such a sub-clinical dose ) it will not negatively affect you. Stay the course, you may not realize the benefits for a while!

Hello @Neomorph. I have HPOTS, Raynauds and Prinz metal angina. They are all related according to my cardiologist, because they all are caused by excessive vaso-constriction. The sympathetic overcompensation from HPOTS causes blood vessels to constrict - with Raynaud's in the feet ( I dont have it in the hands ) and with Prinz Metal angina in the heart ( diagnosed by heart cath ). I also used to take seizures when the vessels in the brain suddenly and severely constricted, causing cerebral hypoperfusion. I dont believe it has been proven through studies yet but I know that for a few years now there is a theory about POTS being caused by ( or triggered by ) immune response. They used to think it was auto-immune but now they are leaning more towards the innate immune system. As you may well know, POTS frequently is preceeded by viral infections ( i.e. Long-COVID ). My autonomic specialist as well as my local cardiologist told me years ago that Fludrocortisone is not to be taken with Raynauds syndrome or Prinz metal angina due to it causing vasoconstriction. At least ti is that way in my case because the vaso-constriction causes high BP, and Florinef would worsen that.

Hello @Clorato - welcome to this forum! Yes, I have heard of people becoming more symptomatic on birth control. But I am wondering about the above statement - POTS is usually diagnosed by an increase in HR WITHOUT a drop in BP. I have NCS ( same as vaso-vagal syncope ) as well as HPOTS. With NCS the HR briefly jumps up and then both HR and BP drop rapidly, causing syncope. Does your HR stay elevated when standing, or does it drop after a few minutes? You mention taking benzos to control HR - has your doctor ever prescribed a beta blocker of florinef? These are often prescribed in certain types of POTS, as well as NCS.

@MikeO 😉 Yup! You will stink for a while, but it's all worth it!

@Sarah Tee Here is a wonderful and easy recipe for Hummus: 1 1/2 cups cooked garbanzo beans 1/4 cup lemon juice 1/4 cup tahini 1 clove minced garlic 2 tblsp EVOO 1/2 tsp cumin, salt to taste, dash of paprika 2-3 tblsp water ( I use the liquid the beans were in ) Whip Tahini and lemon juice in Food processor, add EVOO, garlic and spices, add 1/2 cup beans at a time and whip then add more, add water if too thick until desired consistency.

@CharlieJacks POTS - and similar dysautonomias - often are brought following a viral infection ( as Long-COVID, for example ) They used to call it post-exertional malaise.

@MikeO when using dry beans I rinse them over and over and over, and then rinse them after cooking over again. This removes most of the outer skins. Removing them prevents the bloating, too!

@Sarah Tee yes, you are right. However - this can backfire on us, the patients! For example - a few times in the ER I told them I needed IV fluids to stop the syncope and then i could be on my way. They refused. I asked them to call my PCP - they refused ( I assume because THEY are the big ER doc and HE is "only" a PCP ). I begged them to contact my cardiologist and they refused - Stating my symptoms were not serious enough to make a call to the big guy. Another example: I had begged my PCP for a long time to order a port for home infusions to avoid the trips to ER. He was uncomfortable because of the risks involved. My cardiologist agreed that a port would be appropriate in my case. I asked him to order one but he said he could not go against my PCP's opinion. But he DID send my PCP a note mentioning why he felt a port would be good in my case. Not long after that, after another refusal of fluids in the ER, my PCP allowed the port and I have been mostly stable since then.

@CharlieJacks welcome to our forum! The list of symptoms you posted does sound like you may have dysautonomia. All the tests they recommended and the cardiology referral are appropriate but it is usually by Tilt table test ( TTT ) a diagnosis of POTS is confirmed. A PCP can order one but most likely the cardiologist would want it. If your PCP is open to it they might order one so you could get it done prior to your cardiology appointment. You can also ask your PCP to do orthostatic vitals in the office, meaning they take your HR and BP while lying down, sitting up and standing. This you can also do at home if you have a BP cuff. Here is a guide to how to do it https://www.cdc.gov/steadi/pdf/STEADI-Assessment-MeasuringBP-508.pdf It is important that the BP gets taken after you stand up for over a minute and again after 3 minutes of standing. This may be helpful to you

@MikeO I add the chickpeas slowly to the food processor while it is running, and if too thick i add a bit of the liquid the beans were in.

@little_blue_jay I have never heard of someone having a heart attack from POTS alone. Of course someone with POTS CAN have a heart attack, but probably not from the dysautonomia. Since your cardiac enzymes and EKGs were normal you should not get too worried. However - I know how scary and uncomfortable the symptoms are, I too have had a few trips to the ER thinking I was having a heart attack in the beginning of this illness. Since then I am so used to the symptoms that I can definitely tell if it is "just POTS" . Having said that - if you are not sure its always better to get it checked out, like you did.

Amen to that!