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@POTSius - I take 5 mg Ritalin in the morning and it helps me be more alert, have less fatigue and enables me to be active and exercise. This helps with the orthostatic intolerance, helps with circulation, balances HR and BP etc. So - it does improve many of my POTS symptoms but only indirect. The direct effects from it are improved attention, increase in energy and less fatigue.

@Fujitsu - yes, alcohol can make HPOTS worse. Personally I no longer drink but used to tolerate light beer; anything stronger set off a HPOTS flare. Liquor is strong, so there is a rapid rise in alcohol, and anything rapid will set off our symptoms. If you enjoy wine you could try one glass very slowly and see what it does. Some people tolerate alcohol in small doses., others become ill right away. as with anything POTS - it's trial and error.

@Fujitsu - yes, I have Hyperadrenergic POTS and am familiar with your symptoms. First of all - have you or your doctor ever done orthostatic Vital signs ( or poor man's tilt )? You take your BP and HR lying for 10 minutes, then sitting for 1 minute and then standing after 1, 3 and 5 minutes. If the HR upon standing goes up 30 BPM or more without a drop in BP and stays up it is POTS. Here is an article on how to diagnose POTS: In HPOTS usually your BP also goes up along with the HR, and your serum norepinephrine levels are elevated upon standing. If your HR is elevated upon standing a beta blocker is usually the first resort medication, and there is no need to be afraid. Despite the fact that most POTS patients are highly sensitive to medications - we cannot improve without them. So usually any new meds are introduced at their lowest dose and then increased per tolerance. What most doctors prescribe along with a beta blocker are very important self measures you need to take if you suspect POTS: an increase of water and salt intake, mild exercise and wearing compression hose. These interventions themselves can be extremely helpful. See more here: It is good that you are on Lexapro, since SSRI's are commonly prescribed for POTS due to their effect on neurotransmitter balance. MostPOTS patients see an autonomic specialist, but an Electro-Physiologist ( type of cardiologist ) can make the initial diagnosis based on a TTT. Your PCP can refer you to one, if you do not have a PCP your psychiatrist can also refer you. The symptoms you describe can be from POTS rather than from anxiety ( although POTS symptoms can cause anxiety ), so seeing a cardiologist sounds very appropriate. Good Luck!!!!!

@WBuffett - Ritalin gives me enough energy to be active. In your wife's case it might give her enough energy to be able to do exercises that allow her to sit up rather than just supine exercises. It also really increases attention and focus. Here are a few posts from members on IVIG, I hope it helps. Here is also a link https://clinicaltrials.gov/ct2/show/NCT03919773

@Lisa C - yes, I am intimately familiar with the denial phase!!!! I think we all are. I am surprised that you are not yet on a beta blocker, since that is commonly the first med doctors prescribe for the tachycardia. I too was on Midodrine, but when my second autonomic specialist diagnosed HPOTS he said it does not help for HPOTS. I responded very well to Carvelidol ( after I had tried Metoprolol and Bystolic without good results ), and I also needed calcium channel blocker for high BP despite the Beta blocker. If your EP decides to start a BB please know that initially it will make you tires - and that is a normal side effect that will go away after the inital few first weeks. Also they get normally started on a very low dose, so it may not show significant difference in the beginning until it gets slowly increased. Huh - that will do it!!!! The up-and-down motion is extremely bad for us, I cannot even hang laundry without becoming symptomatic!!!!

Nystagmus is different from exotropia. exotropia strabismus in which there is permanent deviation of the visual axis of one eye away from that of the other, resulting in diplopia; called also walleye and divergent strabismus. adj., adj exotro´pic. Nystagmus Definition Rhythmic, oscillating motions of the eyes are called nystagmus. The to-and-fro motion is generally involuntary. Vertical nystagmus occurs much less frequently than horizontal nystagmus and is often, but not necessarily, a sign of serious brain damage. Nystagmus can be a normal physiological response or a result of a pathologic problem.

This is actually "normal" for POTS 😒 - that is why they call it Postural Orthostatic Tachycardia Syndrome. It is one of the hallmark symptoms - so don't be surprised if your watch is accurate.

@WBuffett - since your wife has autoimmune disease ( Hashimotos ) she might benefit from IgG, several members on this forum that have AI causes for their POTS ahve been helped by this. I use low dose Methylphenidate ( Ritalin ) for the same reason - it gives me energy and keeps me from getting tired too quickly, and it is gentler than Modafinil ( although my specialist prefers Modafinil ). A med like that may very well be beneficial to your wife. I always get started at half of the lowest available dose and then increase to tolerance. Ritalin has a very short half life, so it stays in the body only for a few hours, enough to get chores done and do a few exercises.

Dear @WBuffett - I used to have to go to ER often due to seizures and fainting. They would run 1 l NSS ( Normal Saline Solution ) really fast, over 1 hours. This never helped. My autonomic specialist usually gave me an order for 1 - 2 l over 2 - 4 hours. This too would not help me. Finally we figured out that 1 l over 6 - 8 hours ( 150 - 200 ml/hr ) helps fastest and longest. My 2 sisters, who also have HPOTS, get IV fluids as well and they also have found that this rate works best; anything faster gives them headaches and high BP. Considering your wife's migraines I think even slower infusions ( 125 ml/hr ) might be needed. As to how long - before getting weekly fluids I would have to be admitted for fluids overnight every 6 - 8 weeks and would get 3 l in 24 hours. This is no longer necessary - I get them weekly at home. Doctors often do not want to use IV fluids for HPOTS due to the high BP that comes with it, but in my case it is proven that the IV fluids LOWER my BP and restore balance in the ANS. The theory behind this is that in HPOTS the ANS causes sympathetic overstimulation, which means there is more norepinephrine which will cause vasoconstriction, resulting in most of our symptoms. The IV fluids restore balance by several mechanisms: they create a steady pressure within the vessels which stops the urge to constrict and in return stops the dumping of norepinephrine, they help to dilate vessels and allowing for circulation to the brain, and - obviously - they counteract hypovolemia ( low blood volume ) and therefore stop the faulty ANS response. As to where and how to get IV fluids: they are given in Infusion centers, some urgent care clinics, some doctor's offices and ambulatory surgery clinics. I live one hour away from the nearest town that offers any of those services and since I am homebound d/t POTS I qualify for home care services. Problem is that homecare agencies require a permanent IV access for IV home therapy. Since I was unable to tolerate traveling every week for IV fluids - and obviously benefitted from the therapy - my docs agreed to a port. If you live closer to a facility that offers IV fluid therapy and she can travel there a port would not be necessary. She can simply show up with a prescription in hand. I have been getting home infusions for the past 2 years and have only been hospitalized for POTS related problems ONCE!!! I also rarely pass out or have a seizure ( compared to several times a week at my worst ). The fluids have helped me to be able to be active around the house and exercise, which in turn improved the orthostatic symptoms greatly. My BP has improved to the point that I was able to stop or decrease some of my medications. If her physician is not willing to try IV fluids home PT can still improve her to a degree, however it alone would likely not give her the strength and stability that IV fluids have given me. I hope this is helpful and I hope she will improve. Good that she is on the waiting list for a specialist - it seems she is in dire need of intervention!! Best wishes - hang in there!!!

Hello @WBuffett - I am so sorry that you and your wife have to endure this!!! To answer your question: yes, I have been in that position, however for me it is only during a flare. I get so bad that if I stand up my BP either drops and I feel faint ( or actually faint ) or my BP skyrockets and I have autonomic seizures ( no circulation to the brain from blood vessels constricting ). At those times I have to crawl to the bathroom to prevent passing out. For me ( and many others, for that matter ) the ONLY thing that stops me from going to where your wife is now are IV fluids. In the past my autonomic specialist ordered IV fluids weekly for a month and it stopped the symptoms completely. Then my PCP would hospitalize me overnight for fluids whenever I got a flare and I would go in very sick, unable to walk etc - and the next morning I would leave skipping and hopping!!! Today I have a port and get IV fluids up to 3 times a week at home and am much improved ( compared to back then, of course still live within the limitations of POTS ). Here is an article that explains that IV fluids are a proven treatment for severe cases of medication refractory POTS, maybe you want to show this to your wife's doctor and explain that it is used by the leading physicians in the autonomic field: https://pubmed.ncbi.nlm.nih.gov/28185102/ It is no surprise that your wife is now bedridden - however she has to be terribly deconditioned by now, and that makes POTS much, much worse. When we spend all our time supine in bed the act of getting up and adjusting to being upright takes much, much longer, so the symptoms of presyncope and syncope become worse every time we stand up. Orthostasis ( the ANS responding to being upright ) is a very complex process and is disturbed in POTS patients. I am not sure if you live in the US but since your wife is homebound she qualifies for home therapy ( for most insurances ). What is very effective in deconditioned POTS patients is physical therapy, I have received it when I was at my worst. They come to your home, assess her abilities and then work on slowly strengthening her body to relearn how to first sit up and then stand up. They teach exercises lying down first, to strengthen her muscles, and then ( when she regained some of her strength ) graduate to other exercises. all this is done to her tolerance, so no need to be afraid. Once she has regained some of her strength and lost some of the fatigue the doctors can start working on her medications again. In her current state most meds are probably too strong, and cant help due to her deconditioning. Medications cannot make her get up and move - her body has to relearn that. If her physicians are flabbergasted they hopefully will be open to these proven treatments. Feel free to share this response and the above link with her doctor - this regimen of IV fluids and PT has helped many POTS patients, and it definitely has improved my POTS when it was at its worst. I too could not tolerate most commonly used POTS medications, so taking a more aggressive approach with IV fluids was totally appropriate. I strongly believe that these measures will help your wife - please ask her physician to consider them. Don't lose hope - the only thing that will keep her in this condition is not doing anything. Feel free to PM me anytime you have further questions or need help. Best wishes!!!!!

@Lisa C - I will send a PM.

@PotsieCrocheter I was seen by an Optometrist before and had no problems with eye dilating drops.

@TigerLily - yes, now that it is mentioned I do get a runny nose after eating, and often right after getting up in the morning. This is year-round and happens with every LARGE meal, so I don't contribute that to seasonal or food allergies. I wonder if it has to do with the ANS?

@Sam4877 - I believe that heart rate recovery is different when you have POTS. I know that for me my rate is definitely longer after exercise ( however - I stop and rest if an activity causes my HR to go up, to prevent a flare ). In POTS the ANS malfunctions - so you probably can't compare your reactions to the norm. Personally I see no concern to worry about a long HRR being a mortality indicator. Don't worry - and be well!!!!

@Wendy Ide - thanks for your response. I have heard of Cayenne pepper being very useful for cold feet but have never actually tried it. It is supposed to act as an irritant and therefore dilates the vessels. I will give it a try!

@PotsieCrocheter - Thanks for the poster - it really sums it up. They should have blood on her head to make it more real yet ( unfortunately I bumped my head quite often ... 🥴 ). Here is an article you might find helpful: Best Wishes - stay strong!!!

Hi @Lisa C - I had long term disability insurance through my employer when I could no longer work due to POTS. The requirement with mine was unable to work for 6 months and diagnosis of ongoing health problems ( HPOTS and NCS in my case ). Once I applied I had to talk to a caseworker over the phone and fill out some paper work, but it was pretty clear cut, and obvious that I was unable to work. Once they approved my case they required me to apply for SSDI ( so they did not have to keep paying me until I turned 65 ). They provided a lawyer and once SSDI was approved I had to pay them all of the lump-sum payment ( that was in the contract, once approved for SSDI I have to pay them back ). I have been disabled for 8 years and they still pay me a small amount every months.

@PotsieCrocheter - my seizures are called autonomic seizures. They look exactly like a grand mal seizures, but are not epileptic. They are caused by excessive vasoconstriction cutting off the blood supply to the brain ( this was caught in an epilepsy monitoring unit while hooked up to both EEG and heart monitor. It's essentially a severe form of fight-or-flight ... I faint "normally" too, but that is caused from excessive vasodilation and sudden drop in BP ( neuro-cardiogenic syncope ).

Here is an excerpt of my article "Hyperadrenergic POTS - an overview of a subtype": "The third major characteristic is the elevated norepinephrine and epinephrine levels in a person with hyperPOTS. Adrenaline is a neurotransmitter, a substance communicating within the nervous system and it is active in the synapse, the junction between nerves. When present, it causes activation of the sympathetic nervous system, causing an increase in HR and/or BP, commonly known as the “fight-or-flight response” which causes excitement, tremors, etc. The increase of norepinephrine can be activated by different mechanisms, the ANS produces too much adrenaline ( centrally mediated hyperadrenergic activation ), the excess adrenaline does not get cleaned out of the synapse once no longer needed ( Norepinephrine Transporter Deficiency ) or autoimmune antibodies against cholinesterase receptors. (Vanderbilt)" You can find more info on POTS on our Information page. Huh! Don't I know it 🥴! Unfortunately for me these episodes usually lead to fainting, and in my hay days I would faint or have seizures everywhere, mostly at work in a hospital. I became strangely familiar with all types of bathroom floors ( my go-to choice for peaceful fainting ) in all kind of places, restaurants, stores, offices, church, my garden ... thankfully today I don't faint unless I'm in a flare ( meds, IV fluids and operating strictly within my limitations helped me overcome them ), but since I am currently recovering from a bad flare I rested comfortably on my PCP's floor after fainting while talking to him. Thankfully he is in on my secret and has seen me pass out too many times, even caught me once or twice before hitting the floor!!!!

@Chocolate - welcome to this forum, and thank you for your informative response. How did they diagnose your condition - what tests did they do? Was it a routine eye exam???

@Jamie S - so sorry you guys have to go through this!!! I am not sure how old your daughter is but I have a neighbor whose daughter had Lymes disease in senior high and developed POTS after it. She was limited for a year but and was not able to go to college as planned, but after taking a year off, taking it easy, starting a beta blocker and following the usual treatment of salt/water/compression she improved to where she was able to become a CNA. She now is completely symptom free, except for palpitations. The most important thing she can do for herself is the above mentioned regimen, avoiding stress and prolonged periods of standing and exercising regularly to her ability. This is VERY important, especially since she is minimally affected. 30 minutes aerobic exercise 3 times a week is recommended. Also - if she gets symptoms ( such as dizziness, palpitations, racing heart etc ) - regardless of where she is or what she is doing: she must sit down and rest to avoid a flare. In younger people post-viral dysautonomia can be overcome, however often it reappears with usual triggers such as illness, pregnancy, trauma or very stressful experiences. I am so glad you state that she can function at 85% - and I hope this will improve as well. Best wishes!!!! 😉

My sisters - who have HPOTS - have severe vision problems related to the dysautonomia. They were diagnosed with a condition that causes one eye to be directed to the side rather than focusing in the middle ( sorry, I forgot the name of this condition ). It causes symptoms as you describe, mainly difficulty focusing - trying to focus on a computer for example causes an adrenaline spike for them. They tire out easily and get overwhelmed easily by fast movement around them, too.

@leminisor - this sounds scary!!!! As far as I know this is not a symptom of POTS ( at least not a common one ). The fact that you woke up gasping for air is definitely a concerning symptom that should be brought to your physicians attention at once. What IF it is related to an allergic reaction? Please seek medical treatment right away. Good Luck!!!

@PotSdealer - I am on low dose Ritalin for POTS and never had any withdrawal when I stopped. It stays in the bloodstream for only a few hours, so unless you take it several times a day it should not be a problem. Nicotine is out of your system in 72 hours and I am not sure if marijuana causes withdrawal. But the Caffeine can definitely wreak havoc with you if you are used to a lot of it every day!!!

@Sam4877 - I agree with what @KNF recommends. This Forum is designed to share experiences and is not capable of interpreting tests. Please direct any questions to your doctor. Good luck!!!!