Sporadic episodes

[ram100]

After reading a lot of the posts on here, I can identify with the symptoms that a lot of people are describing. I'd just like to ask people though, what kind of pattern their symptoms take, as i don't understand from their posts whether they are feeling like this all the time or whether there is an episodic nature to their symptoms.
I have been experiencing these types of symptoms for over a year now. I can have periods of 3-5 weeks when I feel pretty much perfectly fine (i can feel it more than I used to if I 'push' myself though, eg by having a very stressful week or doing a lot of physical activity). Then I will have a period of a few days, and sometimes even a couple of weeks when I just feel like death. When I stand up my body goes into tremours, my jaw shivers uncontrollably, my knees buckle and my breathing goes all weird (like hyperventilating, but really slowly).
My cardiologist says I have a possible POTS, but wants to check for pheochromocytoma before he gives an official diagnosis.
My question, then is to those of you who have been diagnosed with POTS. Do you experience your symptoms most of the time? Or are there periods where you feel ok and can live your life pretty normally?

[lfreem02]

Sorry to hear you are having a rough time.  I don't feel right complaining about my own symptoms when I see all you have had to go through.  Hopefully you will get some relief soon.

[lfreem02]

Oh, almost forgot to address the tremors.  I started having fine tremors within 12 hours of starting on Pindolol.  I would have head to toe tremors almost like a seizure when I was getting out of bed in the morning.  I stopped taking Pindolol a few weeks ago, which has helped.  I am still dropping things, and my hands are shaking a little now, but nothing like I was experiencing before.

[lfreem02]

I am fairly new to my symptoms, so I have been wondering the same thing.  My lightheadedness and blurred vision just started one morning about five months ago when I was driving into work.  My resting heart rate went from 70 to 90, and has been up since (120 or higher without medication).  I was very active, and exercised almost daily.  My blood pressure always appears normal, but it was 80/60 with a heart rate of 50 when I was given nitroglycerin during a tilt table test.  I have also have blood pressure changes during the standing, sitting, laying down tests.  I have experienced left jaw pain, flushing on the left side of my face, burning in my left eye lid, feeling of cold fluid running under my skin on my left arm, Raynaud’s, dry eyes, fatigue, lightheadedness, rocking vision when I walk, pain and burning in my calves, and blurred vision in my left eye due to my pupil dilating for now real reason.  Some symptoms have stopped, but the lightheadedness is there to some degree from the time I get up in the morning, until I go to bed.  Also, the rocking vision that makes me feel like I am watching a home movie is always there when I am walking.  I haven’t had a good day in five months. The cardiologist told me something was triggering my vagus nerve, my GP told me it is an autonomic issue, and the Rheumatologist suggested POTS based on two young women she had seen within a month before I met with her.  The GP said POTS is a possibility.  I have noticed that there are some symptoms that occur for most people, but not everyone has the same ones, or has all of them.  I haven’t determined a trigger, and am still trying to find a treatment that will allow me to shop or drive without fearing that I will pass out for the first time.  I am one of the fortunate ones who have not passed out.  I also can exercise daily, which actually makes me feel better (while I am exercising, and for a short period afterwards).  I work at a university with a research hospital on campus, so I started going to doctors immediately, and have had a lot of tests done in a short period of time.  All of my doctors are familiar with orthostatic hypotension, and the treatments, but no one specializes in autonomic dysfunctions.  I think there used to be one doctor who passed away over the past few years.  Hopefully you will experience more good days than bad, and will be one of the lucky ones who eventually stops having symptoms altogether.  I have been told that people can go back to 100%, but I don’t know if that is just an urban legend.

[oldtrout466]

Hi - I am in the UK too - have been having a variety of health problems so it has kind of confused and delayed identifying what symptoms are caused by what BUT - my cardiologist thought i might have IST, then considered POTS but before we got round to a TTT I had a sudden flare of high blood pressure -after a massage - Basically it was like my sympathetic nervous system had gone into overdrive - flushing, high BP, burning pain in chest and arms, vasoconstriction in legs and arms and accompanying cold and shaking, slow heart rate and breathing (despite various dr's trying to tell me it was a 'panic attack!'). This has been happening episodically for the last year -but never as bad as after the massage. Symptoms of extreme fatigue, cognitive fuzz, Tends to be triggered by doing too much -like trying to go back to work!
Like you- cardiologist thought about pheochromocytoma and I had urine tests and MRI last Friday. One thing that strikes me about your post is that you say you are taking Beta blockers -If there is a suspicion of pheochromocytoma then it can be dangerous to take beta blockers on their own with an alpha blocking agent as it can trigger a hypertensive crisis. You might want to check that with someone??
I have noticed the pheochromocytoma posts are on the cancer forum for more info. Hope you find out something soon.

[Heiferly]

Hey,

Saw I'd been "summoned."  :-D  Very rough spell myself at the moment but trying to get around to everyone who has posted lately to say "I see you" and I will be back within the next few days as I'm able, answering everyone's questions.  I'll do my best.  Sorry for the delay, just bear with me as I try to muddle through.

Thanks so much for your patience!!
Welcome to the community!
-Heiferly.

[MeaganM8124]

Hi Ram,
     The shakiness for me is more like a pre-faint (low sugar) kind of feeling where I suddenly feel like I'm outside my body and might faint.  Others here actually do faint but luckily, I don't have that happen to me.  As far as the tremors you describe, I don't have that and I haven't read of anyone on here who does but according to Dinet, 37% of patients with POTS do have tremors.  I don't know how to say this and I could be wrong but I think the tilt-table test is a definitive diagnosis of POTS.  That doesn't mean that you don't have another form of dysautonomia but POTS is defined as an increase in heart rate of 30bpm or up to 120bpm upon standing.  There is another member (Heirfly sp.) on here who is very knowledgeable on the different dysautonomias.  Maybe she will reply or maybe you could try to send her a message.
     When I say I have good days and bad days, I mean that on the good days, my blood pressure is not so low and I can somewhat function.  My heart rate always increases upon standing even on beta blockers but instead of 180bpm pre-beta blockers, it's around 125bpm now.  If I am dehydrated or stressed, I have the "bad" days.  I also always have bad days around that time of the month.  On the bad days, I have fatigue, headaches, dizziness, nausea, rapid heart beat, chest pressure, shakiness, and it's hard for me to function outside the home.  On the good days, I can go places but I try not to go too far from home because it can hit at any time especially after eating a big meal at a restaurant or something (it always increases my heart rate).  So technically, the POTS for me is always around but I have just learned to control some of the symptoms with vitamins, hydration, relaxation, and little exertion.
     With that in mind, before the POTS started, I had something else going on.  Like you described, I would get sick for a few weeks for no apparent reason and than it would go away.  During this illness, I would get severe muscle/joint pain, fevers, stomach problems, weakness, dizziness, nausea, tingling/numbness in hands and feet, and headaches.  I had many, many tests and everything came back normal.  I didn't have tremors like you described but my leg muscles would twitch (not jerk but small twitches) and sometimes it felt like my body was vibrating to the point where I thought we were having an earthquake.  These episodes would go away and come back just like you described.  This started about 5 yrs ago and then the POTS came about a year ago.  I am still trying to find answers because since the POTS, my muscle pain has never gone away.  The pain now is so severe that when I'm having a bad POTS day, it adds to the misery.  I have seen many doctors and have had many tests but nothing.  My doctor has now diagnosed me with Chronic Fatigue Syndrome and apparently, POTS is very common for people who have this.  I'm still having more tests though.
     Sorry this is so long but I got the impression that you wanted more details so I wanted to give them to you.  I just had my adrenals checked and I read that adrenal problems or deficiency can cause tremors and is common with dysautonomias.  Maybe this could be an option for you if you get nowhere with the POTS.  At the least, I think you should go see a specialist who specializes and tests for dysautonomia (like a Neurologist or the Mayo clinic) so you can know for sure which one you have.  My Cardio did the tilt-table and then referred me elsewhere because apparently, they don't specialize in dysautonomia because it's pat of the nervous system.  They have autonomic testing facilities in some states mentioned on this website.  One thing we have all learned here is that we have to be our own health advocates and we have done lots of research.  I know how much it ***** to be sick and not know what's going on.  Below is a link to a great dysautonomia sight that explains all the symptoms of POTS and other dysautonomias.  I hope it helps and I really hope you get answers soon.  Feel better and feel free to ask more questions.  I'm not sure if I'm much help but it's always great to have someone to talk to.   :)

Meagan

http://www.dinet.org/symptoms.htm

[ram100]

Hi Meagan, thanks so much for your reply, its so great to finally speak to someone who has POTS so I can find out a bit about it! My tilt table test was negative, but the cardiologist said it didn't necessarily rule POTS out, and I had a very low blood pressure result on it, which he said could indicate POTS. I've been on betablockers for the past 4 weeks and really thought they were helping, but i'v been ill again for the past week, so maybe not! Going to keep taking them though, because I've had longer runs of good health since taking them.
So when you say you have good days and bad days.... on the 'good' days do you feel pretty much normal and can do things that normal people can do? Like go shopping, etc (I know a 5 mile run is pretty much always out of the question when you have POTS!). And do your good days come in runs of more than a couple? Like, can you have 'good' weeks and be pretty fine for weeks on end (as long as you don't push yourself too much?) and then a few days to a week (especially around time of the month) when you are just completely wrecked for no reason at all (ie you haven't done anything strenuous)? and go weird everytime you try to stand up?
you say you do go shaky when standing, i think thats what i mean by tremours, just usually in my arms or legs. either big twitches like sudden jerking movements, like those you get as you're dropping off to sleep, or rocking kind of ones as though a nerve is trapped or something and my arm will just twitch back and forth involuntarily, or my leg will act like its on a washing machine or something, like rhythmically trembling. does this sound like what you experience when you say 'shaky' or do you mean more like that kind of low blood sugar kind of shaky? do you get a tremour in your jaw? like you are shivering like crazy, but you're not cold?
sorry for all the questions! just really need to get to the bottom of this!
thanks very much
ram x

[MeaganM8124]

I have POTS and I have good days and bad days.  I have learned that there are certain things that make it worse.  Weather, dehydration, overexertion and stress are a few.  I have learned to relax when I am stressed, try not to do too much, and take in more salt and fluids when I am dehydrated.  Did your Cardio give you the tilt-table test?  Is that why he thinks it's POTS?  I don't have tremors and haven't heard of that with POTS (doesn't mean it's not a symptom, I just haven't heard of it), but I do get shaky and nauseous when I stand up sometimes.  The beta blockers do help as well.  Are you taking those?  I hope this helps.  Good luck.