Pistol

When I get this bad I do exercises in bed until I can sit up, then I do them sitting ( light weights nd leg exercises ) and then start walking inch by inch, every time more. I also benefit from IV fluids. My PCP puts me in the hospital for 24 hours fluids and I am as good as new the next day! Hope you feel better soon.

It almost sounds like pre-syncope. I experience sometimes episodes close to what you describe and that's what they explain them as. Do you have a cardiologist? Maybe he would do orthostatic VS or a holter monitor to rule out arrhythmias?

Dropping to the floor to avoid passing out created some quite memorable and embarrassing moments. Also - my warning to others that I am about to go down is "Timber".

Hi greyhound - I too had to deal with cardiologists that did not understand my findings ( I have hyper-POTS ). I had 2 TTT, one showed NCS, the second was interptreted as normal by cardio but when I finally got in with POTS specialist he said they both were clearly positive for POTS. But he also says that - especially with hyperPOTS ) the TTS is not the gold standard. The BP and HR you showed are very close to how mine were during both of my TTS, except I passed out during the first one. But you don't have to pass out to have POTS, some people only display pre-syncope (feeling like passing out). I went through 5 cardios - only the POTS specialist was able to help. Plus - my sister lives in Germany and also has POTS. She could not get answers there at all so she came here ( USA ) to see my specialist and he diagnosed her right away with hyperPOTS. From other posts on this Forum I read that there are good specialists in UK - check on the physicians list on this site, they have some listed. Good Luck!!!

Thank you all so much for your compassionate and wise advice. It is one thing to share this with "normal moms" and moms like you who share the same situation and handicaps. I appreciate it and take it to heart!

Hi - I am wondering if anyone here is familiar with this situation: I am a Mom and disabled due to POTS. I try to keep up with the housework but do so barely - that makes me feel guilty. When I have a good day I can do stuff in the morning but then am wiped out in the evening or even the next day - that makes me feel guilty. I cannot attend my daughters events ( school. sports or hobbies ), often am not able to join my family in going to church or shopping or eating-out - that makes me feel guilty. In the winter I can't go out due to the cold and in the summer due to the heat - that makes me feel guilty. My daughter's BFF's mom takes her shopping and to the movies - that makes me feel guilty. And when I decide I am well enough to go somewhere my family sometimes asks me not to because if I give out they have to leave early. If I rest before an event to be able to go - I feel guilty. And if I last minute get too scared to go because I might pass out - I feel guilty. I know I should not feel this way but I do anyway. How do you all deal with these feelings and what do you tell yourselves to "snap out of it"?

My specialist advised me to not ever take steroids unless I am in a monitored environment because it would " cause my BP to sky-rocket ". I have been avoiding them at all cost.

Hi - I too had the same issue when I was a teenager, leg discoloration (I think it is called livedo reticularis ), dizziness, shakiness etc. I also passed out a lot. Only much later in life became this a serious issue. I am diagnosed with hyper POTS. Back then the doctors also did not know what it was.

I had an implanted heartmonitor for 3 years and in the beginning of my POTS I had palpitations as bad as you describe them, pVC's and PAC's, atrial flutter, bigeminy, trigemini ... Toprol, bistolic, Norvasc (betablockers and calcium channel blocker) did not imrove them much until I started Carvelidol, Diltiazem and Lexapro. This combination almost got rid of them completely! I only get Palps when I get bad and my cardiologist says I should look at them as a warning sign that the ANS is getting irritable, which means I have to take it easy, rest, increase fluid intake and if that does not help even get an IV.

Hi - I am hoping to find someone who needs more than 1 bag of IV fluids to get better with a flare-up of POTS. When I get bad with POTS symptoms and start passing out I usually get a IV bolus at our local hospital as an Outpatient. I have a standing order for this. However sometimes - it depends on the trigger that caused the flare - my BP and HR go up so much and I can no longer stand up or even sit without syncope or seizures. Then my PCP puts me in the hospital over night and I receive 3-4 liters and between the fluids and the rest I improve greatly and it lasts, its like as if the longer time of infusions breaks the dysfunctional response, my BP goes down, I stop peeing as much, dizziness, palpitations and CP go away. After just 1 bag I am often just good for a day (if that) and after 3 bags I can be good for weeks. Does anybodu else experience this? Many of you report getting fluids but I am hoping to find out if other POTsies also require several bags? Any response would be appreciated - Thanks!

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.