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I had spikes, not that high but they were worrisome to me and my PT. In the end I increased methyldopa and lowered my fludricortisone dose and salt. All of these helped. I think lowering the fludricortisone helped most. My neurologist and cardiologist said not to worry/go to the ER until it hit 180/110 but I prefer it 130s-140s/80s. It took me about three or four months to figure it all out.

@Sam123 I get something like 4 or more gms of salt per day and take fludricortisone which helps your body retain blood volume. I have never fainted but get more symptoms, including dizziness and shakiness the longer I am upright. I'm very disabled and housebound so not a good comparison. After three years of trying various drugs I seem to have some that help being upright somewhat now. I've also been going to physical therapy for a year and on a good day, maybe once a month, I can stand and walk for around an hour. I ride a stationary bike and use a rowing machine three times a week and do strength training most others. I get severe sensory overstimulation whenever I go out, moving vehicles, Dr offices, the PT place. My neurologist told me it's a marathon and will take years to see improvement but I will never be like I was before. I was a professor and traveled the world but I have accepted and adjusted to my new life.

I usually feel better in the evenings likely because I have had so much fluid during the day that things stabilize somewhat. Are you drinking several liters of water (I drink about 4) and seriously increasing salt intake? Those are standard treatments for getting blood pressure elevated and heart rate better controlled. I find if I quickly drink about 750mls of cold herbal tea quickly a few minutes before standing I'm not so dizzy and heart rate and blood pressure are better, at least for awhile.

My understanding is that stress may be a result but not cause of POTS. Hopefully your cardiologist will do a "poor man's tilt table test" when you are not taking propranolol which, as Yogini states regulates heart rate and blood pressure. If, after laying down for several minutes when you stand upright your heart rate increases greater than 30 beats you likely have POTS. Usually my cardiologist will test my heart rate after immediately standing then 2 minutes, 5 minutes and 10 minutes. Blood pressure can drop significantly or for some people it actually rises. If you check the information section on the main page of this site there is a lot of information that should be helpful.

Yeah s, very frustrating when you find something that helps and then it stops working. For me it's usually right after I get a 90 supply! I tried four different beta blockers before I found Bystolic. That definitely cut the palpitations, but again, it took messing with the dose. Too much made them worse, too little didn't do enough for the tachycardia.

I sincerely hope that the cardiologist can help you. Having a knowledgeable, caring specialist is so important. Catecholamines are: "are hormones made mostly by your adrenal glands as a reaction to stress. When you feel stressed, these hormones increase heart rate, blood pressure, breathing rate, muscle strength, and mental alertness." According to this site https://www.webmd.com/heart-disease/catecholamines-14697#1 I had a blood test and a urine test. I take methyldopa for norepinephrine surges and it works very well.

Have you been checked for hyperadregenic POTS? Some of what you describe sounds like it. You would need a laying and standing 10 minute catecholamines test. Are you seeing a POTS specialist? They generally do this testing.

I can't explain why it isn't helping the palpitations but in my case the longer I was on it and increasing the dose helped norepinephrine surges and palpitations. I started with 250mg once per day and increased to twice per day after about a month. Keep track of all your bp/hr and other symptoms and then discuss with your Dr. I too found it more tolerable than clonidine.

Methyldopa works for some. I found it "smoother" than clonidine. It's very effective for me.

I take it for norepinephrine surges. It works very well for that. I find it more smooth than clonidine. I don't know about it helping with tachycardia.

My beloved, knowledgeable PCP has left his practice and I am struggling to find a new one. I have fantastic POTS care from a neurologist and a cardiologist but would like a PCP who has experience/knowledge of POTS. Thanks.

That's so wonderful and in such a small city too. It's such a relief to find a knowledgeable Dr. I'm happy for you all.

Oh yeah. Once I couldn't get out anymore a large number of friends disappeared. I don't even get many emails anymore unless I email first. I try to remember that they are all busy people dealing with their own lives. It doesn't really bother me much anymore. Those that stick around are worth their weight in gold. I also have my dogs which are good company and the best husband ever so I know I am lucky.

Thanks so much clb75. I will look into it asap. Psalm23, I tried Ritalin and something else in the same class and they both gave me tachycardia and diarrhea. I believe there is something else out there in a different class but I can't recall the name right now (brain fog today). It's been three years now and I really want to go see friends and go anywhere other than Dr appointments and PT appointments. What have you tried?

Yogini, can you please post your experience? I too have coat hanger pain, a bulging disc in my neck and can't take NSAIDs. Thanks!

Psalm23, Interesting about Imuran being more aggressive, I didn't know that. My rheumatologist was considering it when I was having digestive issues which Plaquenil made worse. My gastroenterologist said to take Imodium if that works and allows me to take my meds. She said retaining the meds was the most important thing. Rheumy agreed so that's what I do. Next time I see the rheumatologist I'll ask about Imuran again. Do you think that the IVIG helps with the overstimulation? I'm housebound because of that and the fatigue. I haven't found anything that helps with the overstimulation. PCP prescribed transdermal scopolamine but I haven't tried it yet. It's nice to find someone with such similar issues, although I wish neither of us were so afflicated. Thanks so much for the info!

You sound quite similar to me Psalm 23 except for the bp. Mine fluctuates too much but I am hyperadregenic too. After my positive ANA for mixed connective tissue disease I was put on Plaquenil which has helped the most with fatigue and pain in my joints but the fatigue is still overwhelming. Thank you so much for responding.

I'm curious if those of you who have difficulty with moving/swooping cameras on t.v.have issues with moving vehicles too? Anyone else?

Has anyone discussed Florinef to help you retain blood volume? It raises bp and can be used instead of, or in addition to mestinon or midodrine. I too tried several beta blockers before I found Bystolic which doesn't make me so fatigued but I think that it's starting to wear off which seems to happen to many of us. I don't know that anyone knows why. Side effects are always the bug bear. I can take Florinef but not mestinon or midodrine (severe diarrhea). Unfortunately it's trial and error because we are all so very different.

Thanks Psalm23. Does it help? If so, what symptoms? I really, really struggle with fatigue, overstimulation and of course hr/bp. I will have the Celltrend test soon, nothing showed up on the Mayo panel but my cardiologist and neurologist are both pretty positive it's autoimmune given positive ANA. Thanks.

Thanks, clb. I will do as you suggest.

Has anyone on Medicare gotten IVIG covered?

I'm on Bystolic and have tried taking a half dose after exercise but it tanks my bp too much.

Oh the PEM is horrible if I overdo anything. I'm very slowly learning my limits but it all seems so random. I have managed to increase my aerobic and strength training to multiple times per week with the help of a PT but I have days and weeks of set backs. Even short visits here at home or the house cleaners coming in for an hour every couple of weeks causes PEM. The tachy stuff seems to be for several hours after aerobic exercise and going up stairs. Thanks for the responses. I see my cardiologist next week and will ask him and post his reply, if there is one.

Hi. Does anyone else stay tachy for much of the day after doing light aerobic exercise? I either do the stationary bike or rowing machine but it seems those days my heart rate stays high for several hours. I'm on a beta blocker which usually keeps it pretty stable along with lots of water and salt. Thanks.