Pistol

Yes - and that is exactly why IV fluids help to stop the ANS to vasoconstrict. In my case it just did not work, I had no bed effects - simply no benefit. IMO trying the low dosage more frequently sounds like a good idea for your son. Midodrine is very short-acting and I heard from other members on this forum that they had success with this regimen. I too am blessed to have a PCP like that. He has been my Rock since the start of my illness 10 years ago and has been there for me despite numerous bad specialists that were very ignorant, yet he never even heard of POTS before me. I guess that is the difference between a medical doctor and a true physician - HEARING and SEeING the patient, not just the symptoms.

@p8d - when you mention OH - do you mean orthostatic HYPOtension? In my case I used to get palpitations with either scenario but the chest pain is usually with the hypertension ( I have Prinzmetal angina which causes spasms of the coronary arteries leading to chest pain ). This is due to the severe general vasoconstriction caused by the ANS dumping norepinephrine. I do get Hypotensive at times as well - this being caused by sympathetic withdrawal ( as I understand it ). Palpitations in my case mean the sympathetic system is in overdrive - but I am on such high doses of Carvelidol that I barely get them anymore. ( Thankfully so! ).

@p8d - yes, I have had many episodes of witnessed supine hypertension. Once it happened after anesthesia and they gave me IV Labetalol to bring it down. Mostly my Hypertension occurs when triggered and I usually get more symptomatic when upright, but I have been so unstable that it occurred even when lying down. It is when my general autonomic tone is hyper - nothing stops the vasoconstriction, not even my normal meds or rest. That means I let it go too far - that is why I have to very carefully listen to my body's signals and adjust my activity level ( or stress level ) around them. Often I have to stop immediately whatever I am doing and go lie down or I get so bad that even rest will no longer help. ----- However - if I get that bad IV fluids ALWAYS - without fail - normalize my Vital signs and symptoms.

@Jwarrior77- I am very familiar with what you are experiencing. I used to get like this often and when it happened my PCP used to advise me to take another beta blocker and rest in a dark, quiet room, drink fluids and eat salty snacks. sometimes this helped but often it did not. Often these spells ended up in syncope or seizures for me ( don't worry - this is not a common symptom ). He then sent me to the ER if it got to where it would not stop and they gave m IV fluids, 1 l over 2-4 hours. This helped. I now get infusions at home, weekly and prn, and that has really helped greatly. The weekly infusions seem to prevent the episodes and if something triggers them I can take another infusion. I have been seizure-free for 14 months and only faint occaisionally. No ER visits for POTS in 14 months, either ( I used to be in ER or hospital for fluids every 6-8 weeks ). Here is an article about this: https://www.researchgate.net/publication/313506555_Effects_of_intermittent_intravenous_saline_infusions_in_patients_with_medication-refractory_postural_tachycardia_syndrome Many doctors did not understand why they should give me infusions when my BP was HIGH ( normally it is a treatment for LOW BP ) but every time they gave in and did what my PCP suggested it worked - the episode ( shaking, cold hands and feet, dizziness, hypertension, chest pain, palpitations, feeling cold etc ) stopped really soon after initiating the infusion, and often this lasted until it got triggered again. Do you see an autonomic specialist? He/She should be made aware of this for treatment recommendations. It is extremely difficult to stop this on your own, like making a U-turn in an ocean liner. best wishes - I hope you will get through this soon!!!

@Overpots - As far as I know POTS does not cause bipolar disease - so do you mean POTS CONTRIBUTES to developing Bipolar? @Miraclemaker11 I have hyperadrenergic POTS with both high AND low BP. I also get frequent adrenergic storms as you describe. I faint when my BP drops from vasodilation and take seizures when it rises from vasoconstriction. This is extremely difficult to treat. In my case it is a result of sympathetic withdrawal resulting in sympathetic overcompensation AND VICE VERSA. I have tried almost every med used in dysautonomia over the years, including several beta blockers. The beta blocker most able to stabilize these swings was Carvelidol, which is both beta and alpha - active. In addition to this I take Diltiazem, a calcium channel blocker which has helped prevent the extreme vasoconstriction and has also helped with the adrenergic surges. I have found that the symptoms your son experiences ( that you mention above ) happen to me when I have sympathetic overcompensation and in my case if I become so unstable that the meds are no longer help I need IV fluids to stop the constriction which then stops the adrenaline dump. This ALWAYS has stopped the surges for me. I have a port and use IV fluids at home as needed. Of course I am not implying your son should get IV fluids when he is in a rage ( this would be almost impossible I imagine ) but rather I am trying to explain the mechanism by which these symptoms happen for me. I am very sorry for your son for I completely know what it is like and also how scary it is to be in a surge. It makes me very anxious ( a result of the Fight-and-Flight ) every time and I am very vulnerable during these attacks. Not to have an understanding of these feelings or a way to calm down - I think this could easily cause rage in an autistic individual. I have also tried midodrine and it was not effective for me but I wonder: considering the above mechanism that happens in me if it could be that the midodrine simply prevents the adrenaline dump that without it would be triggered? I can imagine just how frustrating it is to see your son suffer like that yet getting the door slammed in your face by the specialist who is supposed to be able to help. There are autonomic specialists listed on our physician site, maybe there is another physician who you could try to see???? Best of Luck to you - please keep us posted!!!!

@chronic-tea this is unfortunately exactly what POTS does to us and I am so disappointed that your docs need to be persuaded to test for POTS. I went through the same thing until I saw someone specialized in POTS - 5 cardiologists and a neurologist told me that it was anxiety or hysteria, despite the debilitating symptoms, proven severe tachycardia and hypertension when upright and frequent syncope. When I finally saw the specialist and he WAS NOT PERPLEXED by my symptoms but rather expected these and said they are all common for POTS - it was like the gates of heaven opened! It was such a relief to be understood and to finally know what is wrong. And to have a name to put to it is really important! Because this is an invisible illness and we do not look sick many people think we make it up but now we have a word that tells people that it is something real. Sad but true. I was not aware that Sjogren's causes dysautonomia. Would you mind sharing the article or source of this information? I would be very interested in that since my M-I-L has it. I hope all goes well with the move and the TTT. Best wishes!!!!

@p8d - same here. I get a certain uneasiness with high BP and another with low BP. Swaying from side to side can happen - for me - from either scenario but I usually also get chest pain with high BP, which helps me to differentiate.

@chronic-tea - Welcome to our forum!!! I totally get your concerns about the TTT. But I just want to remind you that you do not have to have a super-high HR - it just has to go up 30 beats within 3 minutes and stay there. So - if your HR is 60 and jumps up to 90 AND STAYS THERE then you are positive for POTS. Having said that - I had my first TTT showing NCS due to syncope and my second one ( done by a dysautonomia-illiterate EP ) was interpreted as normal but when the autonomic specialist that diagnosed me later saw the TTT he said it was clearly positive for POTS. He explained to me that some less informed cardiologists do not necessarily take the symptoms in consideration but only want to go by numbers. I also had been to a famous autonomic clinic at the beginning of my illness who did extensive testing but told I was fine and prescribed me salt tablets. My specialist later ordered neurotransmitter testing and diagnosed me with hyperadrenergic POTS. He knew I had it after talking to me and looking over my records but had to proove that I had it. He said to me : " Your levels are elevated - here are the numbers they want". When I had my TTT's I was already on betablockers and they told me to hold them 3 days before the test ( which was very scary ). So I guess going back to normal salt intake might be OK but I would not hold the fluids or stop exercising. It might be difficult for you to move the day before if you change your home treatment for the test. Since you are clearly struggling with OI I think your test will be positive and it appears that the interpreting physician is experienced in POTS so he will be able to see what is going on. Remember - standing completely still during a TTT is much harder for POTS patients than regular standing. I also suffer from dry mouth and eyes ( which oddly is the opposite every morning when getting up b/c the sympathetic ANS kicks in and causes tears ) I was seen by a rheumatologist this summer and he checked every possible lab test for AI causes including Sjogren's and all is completely negative. He also did a tear test to see how many tears I produce and it was OK. So if your rheumatologist does not find anything I would be thankful and assured that you do not have Sjogrens. My M-I-L has it and it is a terrible disease. Best of luck with your testing and please let us know how your TTT went!!!!

I know from experience that when we relax our skin may not make contact with the muscle - therefore electrical conductivity testing can be interrupted. Since you mention falling asleep it is possible that the contact between the skin sensor and your muscle was interrupted and this is one of the explanations for artifact. It is usually because the skin does not have contact with the muscle or the muscle is too contracted ( like a spasm ).

@Derek1987 - I sway back an forth like that when my orthostatic intolerance gets the best of me. It is also a symptom of presyncope for me. I believe it can happen when you are dizzy - without being aware of the dizziness ( most likely because you are so accustomed to it ).

@Amyschi - I do not know if the paleo diet is helpful, I never tried it. When I referred to dietary changes for IC it is a different diet. I avoid all acidic foods ( i.e. tomatoes, citrus, vinegar etc ) as well as food that cause higher acid during digestion ( all raw veggies, fruits or yeasty breads ). So when I mention dietary changes I do not mean any specific diet other than low acid. I just wanted to clarify.

@Y.Alice.D I also just had surgery that required general anesthesia. I did super-well, had IV fluids the day before and during surgery as well as the next day. No major POTS related problems, just as with you. I am glad you did well!!!!!

Update for anyone who is interested: allergy season is officially over, I am off antihistamine and I am feeling GREAT!!!! I am able to cut down infusions from 3 x a week to twice a week and hope to be able to go back to once a week. So yes - allergies definitely made my POTS much worse and now I know why I have been very sick every spring and fall for the last 10 years!!!!!

I have Interstitial Cystitis ( IC ) which is not uncommon in dysautonomia sufferers. Diet can greatly improve this and also aid in less urination, leading to retaining more of the fluid you ingest. I am curious why your neuro would consider stopping the Lexapro? Yes - ANY infection could cause POTS symptoms to worsen but the mechanism of Lexapro in POTS treatment is quite different. Could you elaborate?

@POTSius - a combination of Carvelidol. Diltiazem and Guanfacine has helped me with those symptoms.

@Jwarrior77 yes, I have this happen at times. I am not sure exactly what the cause is but in my case it gets relieved with bedrest.

Hi @MTRJ75. I take Lexapro and was told that it takes about 6 weeks to kick in. This can be the culprit. Whenever I have an infection my POTS flares with palpitations, high and low BP, fainting, tremors etc. It is just a real blow to the system and in dysautonomia patients can truly worsen all of our symptoms. I hope the antibiotics help. You mentioned IV fluids - not a bad idea. In my case I have to have fluids anytime I get even the sniffles or I become very ill.

@Ida - sorry you are going through that. Using diapers is not usually recommended because they can cause skin breakdown. How about a potty chair? That way you can just scooch from bed to potty and back. Why are you bedridden and for how long? Often they can send nurses or PT to your home. PT is a good idea because they can help you with exercises to improve orthostatic intolerance, circulation and general muscle wasting from prolonged inactivity. Keep in mind that inactivity can cause but also worsens dysautonomia symptoms.

Hi @Scout - I am allergic to electrodes as well and they usually use pediatric stickers on me. They are smaller and have less glue on them. In the past, when I broke out, I used hydrocortisone cream for the rash. Sorry you have to experience that! At least it is only 24 hours!

You hang in there too, @MeganMN!!! I am sorry you still do not have enough answers but I am glad you are still doing better ( as per your last post ). Yes - POTS diagnosis seems to be a well kept secret in the medical community for many of us!!! Sending well-wishes your way!!!!

Hi @WarpedTrekker - yes, I experience similar hearing episodes. I have hyperPOTS and have both hyper- and hypotension. When I get up too fast from sitting or lying my BP can drop very fast and I become pre-syncopal. At times this includes hearing changes, like as if I hear through a metal tube. I was told that this is caused by circulation changes in the head - which would be from the drop in BP. Sometimes it is brief and sometimes it can result in ringing in the ear for a while. I cannot comment on your drop in SPO2 - I do not know anything about that. Personally I would not worry as long as it goes back up right away. I am wondering if it could be that your fingers get cold and pale when this happens? Maybe the pressure changes in the cabin of the plane cause brief vasoconstriction and your oximeter has trouble reading it because of the cold fingers? This is just an idea. I hope you feel better soon!!!

@brainchild - I have hyperPOTS and when the symptoms first started 10 years ago generalized joint pain was the first thing I noticed. I had complete AI work-up by rheumatologist and it was negative. Whenever my POTS flares the joint pains return, so I do believe it is related. Literature does mention joint pain as a symptom of POTS but I am not sure what the mechanism is. The pain you describe does sound odd - Fibromyalgia usually is a certain type of muscle ache that sufferers often can recognize and can be reproduced by trigger points. My personal thought is that it could be related to dysautonomia. The orthostatic intolerance and post-exertional fatigue in my case are definitely from POTS and I believe is due to the constant stress of the body trying to adapt to orthostasis. Theoretically the body might respond with pain as well. I am aware of several members on this forum that deal with pain in addition to the many symptoms of dysautonomia. I hope you find some relief once your POTS is controlled. I got better once the right medication combo was found ( I am on 12 meds and it took years to get them right ). Best of Luck - be well!!!!

Supernice cathouse - and cute kittens!!!

@outofadream I know that when I get bad and my BP and HR soar in all directions I also get very anxious and feel extremely vulnerable. I have gotten so bad that I called ALL of my docs asking for them to respond IMMEDIATELY b/c I had a surge. People who have not ever experienced this will not be able to relate or understand - but it truly is a scary state-of-being. And yes - the aftermath of this makes me often feel like there is not ever going to be a way out. ( There is though - it passes every time!!! 😉 )

@brainchild - I am so sorry you had to go through this. I also had a similarly bad experience at an autonomic specialty clinic. They did testing - just like with you - and I had a long interview with an intern. Then the doctor ( not a specialist in dysautonomia but a neurologist who is PART of the autonomic outpatient clinic ) saw me and reviewed the info collected by the intern. I was told I did not have POTS, to increase salt intake and for the joint pains I mentioned was told to "get xrays". REALLY! I said: "You want me to xray all of my joints?" and they said "Yes". I followed up 2 months later and was told to take salt tablets ( which made me throw up and I stopped them ). Finally I went to another autonomic specialist who was not part of a research clinic and I was not only diagnosed but also have been successfully ( and respectfully ) treated for many years. I agree - we all hope to get answers when we see physicians who are supposedly experienced in dysautonomia but just because a doctor is interested in that field does not mean that they know how to handle dysautonomia patients. So - coming out of the appointment with a diagnosis but no answers is very disappointing - and I am sorry. I hope you can find another specialist who is more interested in your well-being rather than just labeling you with dysautonomia. Hang in there - unfortunately your story is not unusual.