Pistol

I have no great advice regarding your symptoms but I know of several people in your age group that experienced similar things. A neighbor's daughter had Lymes disease right after graduating High school and she had POTS because of it she had to take a year of, recovered (for the most part) and is now fine ( 6 years later). I also know of a young woman who just graduated nursing school and has a lot of problems with syncope and was diagnosed with POTS. She began having symptoms during school but was able to graduate. Maybe your Doctor could be helpful in determining what is realistic to expect in your current condition? I hope you find guidance and answers. I can relate - probably most on this forum can. If you have a good doctor that understands what you are going through is real - that is so important. If it is dysautonomia then it often takes a long time of trial-and-error before the right meds for your symptoms are found. 

I do not ever pay attention to my HR when exercising because the goal is to get your HR up. When I am well I exercise daily (mild aerobics) and to whatever degree I can tolerate that day. When I have bad days then I just do exercises laying down or sitting. I think your cardiologist is right to recommend you to go by how you feel. It is also important to not overdo it but to start very slow and set achievable goals (if any - you may just want to see how much you can do in the beginning). Don't be scared - it is good for you and a way to fight your POTS symptoms! Good luck, keep us posted!

Hi - I am on Lexapro for years and - along with many other meds - it does help. My specialist has also recommended SNRI's for some patients since it works on Serotonin and Norepinephrine. I could not tolerate that one but many people do. 

I have high and low BP and used to have terrible palpitations and tachy. Betablocker helped but Diltiazem and Betablocker together helped the best. Also SSRI helped. I am on loads of meds for my POTS but these helped best.  Hope you find the right med soon. I also know that Fiorinef can cause high BP.  

Hi Jessica - I had 2 TTT, one showed NCS and one was "inconclusive". Then I saw my specialist who ordered the blood work. But he said that in most cases of hyperadrenergic POTS you cannot count on the TTT and that they are not the golden standard. I also had complete autonomic work-up by Vanderbilt early on and they said I did not have POTS! That is such a common dilemma and I think it is because the medical community wants there to be a clear way to diagnose this but there is not one. The invisible illness when the Doctor has to actually LISTEN to the patient, carefully do an assessment and do testing but also realize that ( although we share many symptoms) the illness is patient-specific. This is difficult for many MD's. At least that is what I have encountered since I first got sick. ---- Exercise helps me when I am well and usually increases my energy but when I get bad I have to stop it completely. 

I have hyperadrenergic POTS and - in addition to TTS - was diagnosed with a blood test for norepinephrine levels. If they are elevated while standing (over 600) then it is positive for hyperadrenergic POTS. However - my specialist is able to recognize it just based on the symptoms and history of patients. I guess you would have to see  very experienced Doc to be told for sure what you have

I know from my own experience that meds are so very different from everybody. I am blessed with good doctors that work with me. After many trials of meds with various responses I now have been on the same combination of meds for over a year and am better controlled than ever. However , I also have to note that - at least in my case - there has never been  a time without flare-ups or bad days. I have accepted that dysautonomia is a CHRONIC condition and it is rare to find meds that will cure all of the symptoms. I feel lucky that I can do things now that I could not do before these meds but it was a long, frustrating process. And I have to put up with side-effects but usually they are affecting my quality of life less than the POTS symptoms they were prescribed for.  

Thank you all for your response. I am on a lot of meds: cardiac meds, Ritalin, SSRI, GI meds, etc... was on seizure med (Keppra) foe a whiie, too. I had an episode while hooked up to telemetry and EEG while in a epilepsy -monitoring-unit (for 4 days) and it showed no circulation to my brain while heart was OK.  I also had many recorded seizures during surgeries and procedures that were monitored and witnessed. I keep being told that this very rare but I am sure there are others experiencing the same thing?   

Hi - I am wondering if anyone else here experiences seizures from POTS? With the type of POTS I have I pass out when my BP drops and I get seizures when my BP goes up. This is (so I am told) because when the blood vessels dilate the BP drops and the circulation to the brain stops and when the autonomic system overcompensates all the blood vessels constrict and there is no oxygenation to the brain and that's when I get seizures. It would help to know if others experience this too? 

I sooo relate! To me the funniest thing is that I have to do thing s as my body allows. For example: drop everything because feel suddenly enough energy to vacuum the living room or change sheets and then I am so proud of myself that I tell my husband or call my girlfriend about it! Or - on the opposite - my daughter has to explain that her mom can't make it to a school meeting because "she cleaned the bathroom:!!! How ridiculous is that? --- If I feel good enough to be in a store at all I always know where all the benches are in case I give out. And sometimes I have to sit on the floor and act like I am sooooo interested in the canned asparagus or laxatives on the bottom shelf!  --- Do you ever experience that things that should relax you - like talking on the phone or even listening to music - is like a chore? --- And yes - it all sounds worse than it is because this is our normal and the rewards are there. There are little successes and even records we set, small goals we achieve and at the end of the day we did a lot of smiling. I no longer think about all the things I can no longer do but have learned to celebrate the things I can do. And my family has learned to take it as it goes and that is a big blessing!

I get fluids as needed at my local hospital. When I feel that I am getting bad I get one bag over 2 hours. If that's not good enough than I get 3 bags over 24 hours ( in hospital ) and that always does the trick. One bag lasts 48 hours. 3 bags help for a long time, sometimes weeks or even 2 months!!!! I crawl in like a pile of pity and come out like wonderwoman!!!  -- I also notice that I pee a lot when I am bad and within the first 10 minutes of fluids it stops!!! also - normally IV fluids raise the BP in mormal people but with me it drops!! !60/98 before and 118/68 after bag 1! -- I heard of someone wrapping the bag in an electric heating pad and then sticking it in an insulated bag and hanging it bottom-up on the pole, apparently that works but I haven't tried it. Best of luck!!!!

I also am new to this forum but had POTS for 8 years. In my case I started passing out early on and still do at times but I was told by my specialist that POTS symptoms change over time.  That is one reason why it is so frustrating - you never can be sure that you are "stabilized".  My symptoms change often and triggers are plentiful, like Missy M experienced. I find that a new onset of syncope should be evaluated right away. Have you told your Dr about the pasing out? If she knows she might want to see you sooner? 

Could it be that maybe your meds could have something to do with it? If you take any medications that influence HR or BP? I know that I had spikes of BP at certain times of the day and when the times of  meds were changed (or they were changed to extended - release doses) the spikes improved.  

That is true - I also was at some point evaluated by a neuro-psychologist and anxiety was ruled out. 

My local homecare needs a permanent access to do home infusions, they will not do sticks. I never looked into IV companies but I have a list of national IV suppliers covered by my insurance. I can check with them. Unfortunately I live in a very rural area so they probably don't come out here. I will check into a PICC line though, maybe my PCP would agree to that. Thanks!!!

I do not know what your poor daughter has but I can only suggest you NOT to go the anxiety route yet. That is usually the diagnosis of choice when they don't know what else to do, especially with teens.  Is it possible for you to see another Doctor? Does she have a pediatrician? My PCP did not know anything about POTS but never dismissed my symptoms. I also have a teenage daughter and know that they go through a lot of psychological changes at this age but the symptoms and findings in her case should be investigated. I wish you good luck - just keep fighting!!!!!!

I had the exact same symptoms and was diagnosed with hyperadrenergic POTS . I had to go through 5 cardiologists until someone finally told me that I have POTS. But I had to be seen by a specialist for POTS that checked my adrenalin levels (which were extremely high upon standing) before I was finally diagnosed. Since then I have had many trials of meds but am a lot better controlled as long as I am living within my limited abilities. When you see the Dr Monday make sure you mention " hyperadrenergic POTS". It has a different mechanism than the more common form of POTS as it increases the BP as well as the HR upon standing and is caused by abnormal adrenalin-surges ( do you get shaky, cold, clammy, weak ... ?) I also pass out a lot, maybe your "sleeping" is actually syncope (passing out)?

I can relate to some of your symptoms but not all of them. I have hyperadrenergic POTS and my BP fluctuates between high and low. I also have the problems with tears (dry or abundant), dizziness, nausea off and on, breathing problems, balance disturbances. The other problems you describe I do not have. But everyone is different. Hve you been evaluated for Dysautonomia? 

Unfortunately I am treatment resistant. I am on a lot of meds for 8 years and can usually manage as long as I live within my (ever changing) limits. When my symptoms get triggered there is no real Alternative other than fluids. But yes - a port requires minor surgery and in addition may cause blood clots or infection anytime it is accessed, therefore the PCP's cautioned approach. However - I am aware of this and feel that my life would be so much easier to maintain a certain level of balance over if I could do IV fluids at home as soon as I can sense that I need them instead of waiting when I can get ahold of my PCP.   

Hi - this is my first message. I am trying to convince my PCP to allow me to have a port for IV fluids. I need them often and need to travel one hour each time (one way). I have given him articles and a list of pros and cons but he still is not sure if the benefit outweighs the risk. I explained to him how much it would increase my quality of life (I cannot drive due to syncope, am disabled from POTS and getting fluids at home would give me some control over my symptoms). In addition when he is not in the office and I need fluids I have to go to the ER and many MD's there do not understand why I need fluids when I am not dehydrated and can drink. (Answer is my BP and HR normalize, syncope and seizures stop and I can actually walk!!!!) Does anyone have any advise on what else I can tell him?  Has anyone else been in this situation? I would really appreciate any comment. Thanks!