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Hi @RaniNightOwl I had the simialir fear related to taking new meds because neither my doctors nor me knew how they would affect my body; I've found for myself that desperation or just being irritated at my progress was the thing that made me say 'screw it' and try different meds, I also start with much lower doses of any med just so the potential 'side effects' would be less severe, and my body is really sensitive to many meds.

As far as anxiety/ fear, similar to stayathomemom I do the meditation thing, that and over time getting used to the repeat symptoms of this condition and trying to live a normal life while applying solutions to mitigate those symptoms in my everyday life. Not everything is in my control, but I do know if I do x, y or z I will always feel bad so finding a workable solution around those is where a lot of my mental time goes to. 

I'm in Illinois, there is also Dr. Janice Gilden in the Chicago area as well as Barboi. I believe Milwaukee, Wisconsin also has some POTS knowledgeable doctors. You can also check the physicians list here: https://www.dinet.org/physicians/

I take amitriptyline as a migraine preventative on a low dose, because higher doses make orthostatic hypotension worse. I'm also on verapamil which is a migraine preventative but I take it for chest pain. For me the amitriptyline is the one medication that has worked with no side effects, though with some people it tends to cause some.

I tried Atenolol but for me it just made me feel like I was mentally cloudy all day, some of my symptoms were better but I had that similar lethargy type feeling and I think its because it lowered my BP. I think for my case, since my BP was never a problem beta blockers probably just aren't a treatment that would do me any good, though others have found benefits from them.

Hi Nan,  I was not on disability, but was able to come back to a normal job this past year. Before I was doing freelance work based around a computer so that I could work around my illness. Since coming back to a real 40 hour work week, I did have to find a job that allowed me to do what I'm capable of which means working on a computer; I would have no ability to do physical work or anything where I would have to carry stuff, get up and down a lot, or walk much. I also used a powered wheelchair when I go into the office because it is in a big building. So for me it was finding if I was capable of actually doing the job sustainable (doing as much research as I could before I took the job) and then just seeing how it went.

The worst case scenario would be that I could try it, and make any adjustments necessary to do it successfully, and if it didn't work I would just have to find a new one where I could work on a weekly basis sustainably.

Hi Jeff, similar to the above ^ I also find it occurs every time I stand, sometimes it is worse than others and doesn't matter if I'm standing up from a chair or from lying down; typically from lying down flat the heart rate jump is a bit worse. I also can get tachycardia randomly throughout the day, to me it just feels like my heart can just become tachycardia very easily - anxiety, and various types of psychological stress and I can just feel my heart rate reacting more so than the rest of my body. 

I've had this as well as WinterSown mentioned, it typically feels like sensory overload with a little bit of vertigo for me. Loud music, plus lots of people, different lighting in the room can often give me this 'out of it'/ 'drunk' feeling. It was much worse at the beginning of my illness because it would bring on a lot of anxiety but nowadays if its there it just feels like a normal reaction my brain has.

I also have depersonalization disorder as well, so that can make things feel daydream like or fake or make me feel detached from my surroundings. Often times new places or lots of stimulation (sounds, lights, people, cars, etc.) can make it a bit worse.

Hi @sheal if you can do exercise without feeling too bad afterwards then that's pretty awesome; it took me 4 years before I was able to find anything exercise related that I could do sustainable. But here's how I got started after basically doing nothing really physical for all those years. 

- Start small: as others said the stationary bike (often recommended is the recumbent) is a good starting point. I began with just 5 minutes a day, and it was important that I did it every morning. I found for me that I actually feel much better if I do a longer distance/ time so I moved it up to 15 minutes a day and began from there. After a while it just became natural to add more time, up till where I could workout on the bike for over an hour.

- Find what works for your body: I can only do cardio exercises for medium to long stretches of time, I cannot do weights and doing cardio for too little of time makes me feel horrible. Doing the exercise everyday for me is much better than if I skip days in between. - all this I had to test through an uncomfortable trail and error.

Hi @aaronh819 when I first got sick (this is way before POTS or anything autonomic was even considered) most my symptoms were cognitive and visual. My eyes were fine but the parts of my brain that deal with visual perception had the problem. I had terrible brainfog, it was extreme; it would be hard to remember what I was going to say next in a sentence, I would drop words randomly, I would just feel like I was never all the way there.

Visually I had that 'shutter' effect at times like when you move your head from left to right you feel like your seeing frames rather than a normal smooth visual, sensitivity to light, trails after moving objects, afterimages from everything, visual snow, camera flashes and certain lights get that 'burned in' afterimage effect you mentioned, tons of small visual trails when looking at the sky they kind look like little strings moving around all over, it takes my vision a longer time to adjust when going from light to dark. I can completely related to a lot of what you experience. - most of the visual stuff was more related to depersonalization disorder in my case, and same with the brain fog, though I'll get a different type of cognitive disfunction/ brain fog that is more directly related to POTS and the blood flow to my head.

Hi dizzytizzy, I'm sure that everyone's experience with be different on this one. For me personally, I haven't found any different in symptoms based around my salt intake so I no longer do it. If I am going to do exercise I will often take some salt beforehand in the form of saltwater, but on a daily basis I no longer increase the salt intake in my diet because it didn't have any affect on my symptoms.

Hi @jklass44 I would have really bad chest pressure and tightness where it almost felt like I was having a heart attack or something, and this would last for weeks on end. So I had to find a medication to stop it, and was able to get on verapamil (which has helped it a lot) and then I'll still take an aspirin or extra verapamil if I find on any given day the chest pressure is suddenly worse.

All my testing came back normal other than bicusbid aortic valve (which I've had for a long time) and a PFO (which doctors don't think is related to my symptoms); ekg, stress test, holter monitor for a month all normal.

For me I find that each symptom presents its own physical difficulty and so I might have to cope with them differently. I think the hardest thing is when my body is telling me it can't do anymore and I just have to listen to it on those days and do almost nothing actively.

- For chest pains: take an aspirine, take a second verapamil and if its still bad maybe take a xanax. I'll also rest part of the day in bed if necessary.

- Migraines: these take me about 5-6 days to feel normal again so I limit all my physical exertion, eat a lot and try and sleep as much as possible.

- Normal day and challenges: I try to limit how much I walk, and try and do exercise everyday in the way that I can, and meditate every morning.

Hi @Weary I do get some of the visual auras you mention, most times preceding a headache but the ones that are negative circular and stay put I've had a few times in my life; my doctor said their ocular migraines. I don't get a headache with them, they just block out part of my vision and may last 15 minutes or so.

@jklass44 My migraine triggers turned out to be nitrates which are in a lot of foods, but also weather, psychological stress/ overexertion and sleep changes will set of migraines for me. Basically cutting out those foods, going to be and waking up around a similar time each day, eating relativity clean, and not overdoing it on computer/ tv screen time when I feel particularly 'migrain-ish' with my vision.

Oddly the only time I can do anything physically active is when by BP is up, so I can't walk around much but I can run, swim and bike long distances. The treadmill test was the first thing that made me start to realize this, as well as an article on a POTS woman who could run long distance but then would always faint once she stopped running. I do however feel really physically sensitive to what I do after exercise, like my threshold for symptoms has been lowered, but never during the exercise itself.

I am in some ways just repeating the advice and experience that has already been shared:

- I can only compare myself to who I was yesterday; if I compare myself now to my 'old self' that was healthy, or compare myself to others I see around me that are healthy then I need to know that I am choosing to do so, and will probably only feel depressed/ self pity/ longing for the past - it is just not helpful for me, and I still do this more than I need to

- Once I accepted my physical health situation and limitations (similar to you, can only walk 10-12 steps in one go then have to pause before walking again and can only do maybe 50-60 feet in all before its too much), then I was able to accept other things into my life that would benefit me (like a powered wheelchair)

- I agree completely with Pistol's post and would also say, sometimes I ask myself if there is something I want to do that I feel like I can't "have I tried every conceivable way of doing it?" It took about 4 years of trail and error and my feeling worse before I found that I can actually run and bike for exercise as long as I keep my bp up the entire time and don't take a break during it (got this from the story of a POTS woman who could run long distances fine but once her bp got back down to normal she would pass out). I couldn't go to museums or walk my dog before, with the powered wheelchair now I can, walking is way nice to do but I just can't do that, if I'm at a friend's lake house I probably won't be doing all the water sports, but I can still spend time and talk with people, etc.

Hi @Scout I had to get a powered wheelchair because I literally can't do like any walking, which is weird because I can run a lot. I ended up getting one called light rider envy by golden technologies basically because it was the smallest simplest one I could find and it had a pretty decent battery life.

I probably partially use it everyday to allow me to do things I ordiarily can't do; walking any distances, walking my dog at the park, going into work without having to double my meds and constantly stopping during walking. Walking is still way better and if I could I would but I just can't so I do appreciated having this technology available. The only downside, as has been mentioned, is that its expensive and insurance may not pay for it. Currently I have a hitch thing on my car that can carry it and insurance does not cover anything like that.

I've only been to Mayo in Rochester, but my experience there overall has been good. The thing I liked was that since all the specialists are in the same system you can see the 1-4 doctors you need to see in a short duration of time and most of the doctors I have seen there are very good. Typically if I were to try and see an optomologist, neurologist, cardiologist etc. and get tests from all of them around where I live it would take months and I've have to go to numerous practices. That being said some of the doctors have long wait times before you can see them, for example the autonomic specialist was a 6 month wait before I could get an appointment. 

I have heard good things about Cleveland Clinic as well and have thought of going there in the past.

Hi @Haenir so for the depersonalization/ derealization and brainfog I found that amitriptyline fixed those almost completely in me, though I don't believe that is the typical case for most people. I started on the lowest dose for a month and then moved up after a month and did that four times, after 5-6 months of this I felt 'almost' normal; I always have some amount of derealization, and the brainfog is there in different ways with my POTS.

Hi @DAB19 I was on gabapentin for a short stint just to see if it would help with any of my symptoms, I believe for 3-4 weeks. I was on the 300mg dosage as my doctor wanted me to try a low dose of it first as well. For me it didn't hurt or help anything, its affects felt a little like a benzodiazepine, for me for the first week I just felt more calm almost like I was on a benzo.

While I was on it, it didn't have any negative side effects, I don't know what the long term effects on being on gabapentin are though.

Hi @Haenir I related to some of your symptoms you were describing, though I have both depersonalization disorder as well as POTS.

- "worst symptom is the brain fog, listening to anything or anyone is out of the question." - this was part of my depersonalization disorder, I had terrible brain fog and listening to a few people talking together in the same room was extremely irritating to my brain.

- Then there is anxiety, which manifests as continuous panic, delusion and sometimes hallucinations (different from normal anxiety). - I would have really bad anxiety just the full body feeling, which again was part of the depersonalization disorder, I never had any delusions or hallucinations but with the depersonalization you feel like your in a dream world where everything feels and looks a bit fake, though what your describing sounds quite different.

- I also struggle with fatigue and my senses are completely messed up. - I would have fatigue on and off that would just come and go for hours at a time, almost as though my brain was overworked even though my body was not that tired.

Hi @stooshiecat I've been on verapamil for a I believe 2-3 years now, twice a day 40mg dose I believe two times a day. As others have said verapamil can slow down your digestion, but as far as other POTS symptoms for me verapamil has not caused me to feel any better or worse overall; it just helped the chest pains and discomfort I was having. I am on a pretty low dose though. 

I don't know if this is common or not, but I pretty much can't do any distance of walking at all, however I found that I can physical stuff I typically cannot do if I get my blood pressure up enough.

So for example if you asked me to walk 50 feet slowly I would almost immediately become symptomatic after the first 10-12 steps, but if you put me on a stationary bike I can go for miles and not feel as bad afterwards, but I have to pedal the whole time without stopping and I need to keep my bp up enough but not go too high.

I usually have to sit most of the next day and not walk much, drink a lot of water, eat a lot, and take aspirin.

I did the 30 day holter, when the first cardiologist reviewed the results he stated it has having normal findings. When my cardiologist who knew of POTS saw some of the 'higher' readings he related it back to the variability of POTS rather than a stressful period at work or something like that. Overall my results were not extreme though; my heart rate although easily variable, doesn't typically have the extremes as some other POTS patients.

Hey @Pistol just wanted to add to what has already been said. Because I can find my life so limiting compared to what I was capable of doing before (and I completely relate to the feeling 'cheated' out of something) I have to ask myself what is it that I am wanting to do or wanting to accomplish?

Because there are thing I want to do (work out and go on long runs everyday) that I, unless theres some medical miracle, will never be able to do. There are however other things I'm wanting to do like taking my dog for walks or going to the art museum that I can look at and say how can I accomplish this? It may mean planning, taking additional meds, using a powered wheelchair, or having help from friends or family.

Its really easy for me to look at the sea of things I can no longer do and I can be completely frustrated by it, but instead if I look at the few activities that I really want to do, the list is usually much smaller. I can then approach those activities and try and figure out a way that I can do them.