What to do after POTS Dx

[Ragnar]

Hi,

I'm new here having been diagnosed with POTS a couple of months ago. Where I live I'm only afforded a ten to twelve minute appointment every eight weeks, sometimes longer with the secondary care GP here, not a consultant.

Weirdly the diagnosis was most welcome as I've been suffering for over ten years but I've been told I've been depressed, anxious and many other misdiagnosis that we have to go through. I've also been told I have trigeminal neauralgia which is a real PITA when trying to cope with the symptoms of POTS.

I've been prescribed Bramox, couldn't urinate so stopped and been given compression stockings, I was asked to consume huge amounts of sodium which only served to push my BP up to dangerous levels. I'm now trying Mirtrazapine, 15mg at night. I've also been given a prescription for fluoxocortisone (I think that's what it's called, I have trouble deciphering the GP's writing)

I'm wondering, in the absence of timely visits to a Doctor, what was the single most non-medical action that altered the course of your POTS. I'm making sure I'm hydrated, 'clenching' when I transition from supine to standing and wearing my compression stockings but I'm struggling to manage to change anything. 

Thanks in advance,

Ragnar

[Pistol]

I am sorry - I do not know any treatment other than medications or IV fluids, since you already do conservative measures. For some people Gatorade helps since it has the right amount of salt and potassium. If your BP goes up that much from salt then you MIGHT have hyper-adrenergic POTS. That would need to be treated with medication. When I have times when symptoms get bad I have to rest but also do very mild exercises to prevent deconditioning. And by rest I mean bed and as little stimulation as possible. Since that is almost impossible in my house I often have to go to the hospital for 24 hours for absolute rest and IV fluids. The next day I am well, my BP is down and all other symptoms are gone. I know that is not what you asked since it is a medical intervention but it is ALL that helps me in addition to my meds. Also - I have to use a wheel chair when my BP goes up because the standing makes it worse. --- I am very sorry that you have to go through this, I wish you the very best. 

[WinterSown]

An eight+ week schedule is not that bad for visits, really. Most of my doctors are three or six months between visits but should I call that I need to come in they fit me in the next day or next week, never longer. My cardiologist took me off of all supplements  including sports/hydration beverages,and told me I was to get all my nutrients, from everything I eat and drink. I was a little bewildered where to begin so I joined Weight Watchers for their nutritional tools. I started feeling a lot better withing 72 hours. I was stunned by the speed of the turnaround--eating a balanced diet again has been a big plus. I must also exercise and walk daily or my circulation worsens. The EP has slowly been cutting my drugs down and I am now off a couple and the others cut down to half or less. And, the neuro, has me doing creative arts,, reading non-fiction, and studying to get me out of the fog. Overall I am way better than I was diagnosed fifteen months ago. There are many things you can do to lift yourself up and feel better though it can be a matter of time before you discover what works best for you. Keep trying.

 

 

[Clb75]

Have you tried exercising on a recumbent bike? This has been really helpful for me. I am housebound currently but was bedridden for several months when I first got sick. I think the bike is what helped me to be able to get out of bed. Swimming is also supposed to be helpful since the force of gravity is less while in the water. 

[Ragnar]

Hi,

thanks all for your replies. 

Pistol: I've read about I.V. fluids but that's not available to me, at least not from a medical practitioner. I have tried a drink by SIS, just an electrolyte mix, I even set my alarm at 0300 so I could take on extra fluids. I think it may of made a slight difference.

Wintersown; The thing that frustrates me is that I can't talk to my Doctor in between apps. So if I find a medicine is causing me grief, normally after a week, I have to stop and then wait until my next app. This is why I'm keen to find things that I can try between.

Clb75; I haven't tried a recumbent bike but I was given a rowing machine which I've been using. I find I can tolerate exercise much easier on the rowing machine than other forms.

For me it seems that if I keep myself stress and pain free, from the neuralgia, then things are so much better. 

Cheers,

Ragnar

 

[WinterSown]

On ‎5‎/‎26‎/‎2018 at 10:45 AM, Ragnar said:

Wintersown; The thing that frustrates me is that I can't talk to my Doctor in between apps. So if I find a medicine is causing me grief, normally after a week, I have to stop and then wait until my next app. This is why I'm keen to find things that I can try between.

 

Why can't you talk to your doctor? They don't call you back when you've phoned in that you are having adverse drug reactions? If that's the case you need to immediately start keeping a phone log and record your calls.. Call their office again today, and again after the weekend. If you do not receive a callback by end of the week you may want to consider getting another doctor because you need the right drugs to heal.

You also should be treated with the same professional courtesy and respect that anyone expects when they pay for professional services. Do not forget that you have a fiduciary relationship with the doctor and if you are not satisfied or the work is sub-par you can report them to the state, your insurance company, the better business bureau, Yelp, review sites, and whatever hospital they are attached to. You can get your money back for your copays and tell the insurance company that the doctor's office is not returning your calls about your drug reactions.  It's your life and the doctor is not aware that he/his staff is treating you with low professionalism. 

[Pistol]

Hi - just a thing I realized a while ago: many of us are afraid of trying meds because we are so sensitive to them. So if we start a new med we pay extra attention to see how it affects us. But we need to be aware that ANY med will initially mess with your body, that is why we take them. Most medications take quite a while before our bodies get used to them and adjust to their influence so that we can feel better. Beta blockers in particular - they can make us feel groggy, almost drugged, for several weeks until we adjust to them and feel better. So - it may be helpful to keep taking new meds a little while longer than a week. I have seen terrible side effects in the initial phase of new meds and GREAT benefits it I stuck with them. But - albeit my own experience - in the end listen to your own body ( but be patient with yourself! ) 

[Ragnar]

Hi all. Sorry for not replying in a timely manner, things went better for a while there! I was trying Florinef and things took a turn for the worse, high levels of anxiety, increased dizziness, generally quite a miserable time. My Doctor has told me its nothing to do with the Florinef. I've stopped it and asked for a second opinion.

[GasconAlex]

If you can get it hydrotherapy is great exercise. Up until January I had hydrotherapy with physiotherapy and found that in the water my pulse was steady even when exercising vertically. Unfortunately due to rent issues my physio had to leave the health centre, so now I don't have the hydrotherapy. (The pool is still there unused at my gp's and my gp thinks it would be good to continue but the next closest pool is 40km away and the transport costs would be large, it's very annoying)

[Ragnar]

@GasconAlex I've not looked into that but I will now. I live very near the sea and I was thinking about taking some light swimming exercise there. All I need is to find someone else prepared to get in with me, from a safety point of view!

[StayAtHomeMom]

I sounds like you are doing what you can. Personally I don't like Gatorade but I will occasionally use the vitamin water Revive fruit punch. It doesn't work right away but I usually feel better the next day. 

Sleeping on a schedule seems to help as well. I usually give myself 12 hours and go to bed and get up around the same time. I have noticed the crappier my sleep my symptoms flare more. 

Sometimes it is just time. Most of my symptoms cycle so I just have to wait them out. This past week has been bad insomnia which is starting to make my body mad. It will pass in a few weeks, I just have to wait and things will get better. 

Good luck and I hope you have more good days.