haugr

Hey Kat, so sorry you are dealing with this. I had a ton of vision and dizziness problems when my hyper POTS kicked in. I stopped driving too. It was hard to explain, but it kind of felt like my brain couldn't visually process information like it used to. I have the ace2 deficiency form of hyper pots which has low blood volume. I found that the dizziness / visual issues resolved through increased sodium intake to increase blood volume to get more blood to my brain. I basically drink a few gatorades, propels, nuun tablets, or sodium chloride pills every day. I dont need to take nearly as much as those with the other form of pots do, but 4-5 propels in addition to my regular diet seems to be enough to keep me stable. It is somewhat counter intuitive because of the high blood pressure that accompanies hyper pots and I have found that I have to be careful not to take too much sodium because my blood pressure has spiked to scary levels when I was taking an extra 3 grams of sodium per day. Mind if I ask what you have tried to manage this so far?

Exaccerbated symptoms from pure beta blockers like propranolol for those that are hyperadrenergic is consistent with Dr Blair Grubb's 2008 article. The norepinephrine ends up binding to more alpha receptors as a result of the blocked beta receptors. In that article, he recommends alpha-beta blockers like labetolol instead of pure beta blockers. http://circ.ahajournals.org/content/117/21/2814

So sorry KDUB. I had bradycardia when I was trying to get stable. In my case it was a side effect of taking too much clonidine. Once I cut back a bit my heart rate leveled out. By the way, I know exactly how you feel. I was also debilitated and visiting doctors and ERs multuple times a week, but I did eventually learn how to manage it. Hang in there.

That sounds similar to me as well during my adrenaline rushes. The PVCs showed up on my holtor monitor and on the EKG during my trips to the ER and was told not to worry too much about them since the rest of the results were normal. I was terrified about the PVCs, chest pressure, blood pressure, and the heart rate issues. My adrenaline rushes were absolute torture. The norepinephrine highs created a vicious self perpetuating anxiety cycle that I just couldn't get under control and my blood pressure would spike to really high levels during my episodes. It took me several months to get things under control, but I eventually did and I am mostly back to normal now. Does your blood pressure get high during your attacks? I am also curious if your lying down vs standing blood pressure is noticeably different when you are not having attacks?

I was bedridden for a few months last year when i got hit with hyper pots and I ended up losing my job over it. I eventually figured out how to treat it to the point where it is now barely affecting me. I was really lucky that I just happened to pick a doctor that treats dysautonomia, but it took several months of me playing around with different losartan, clonidine, and sodium dosages to get me stable enough where I could go back to work. I am pretty sure that my root cause is an ace2 deficiency.

I get frequent PVCs during my attacks of high norepinephrine levels. They really terrified me at first. Do you mind if I ask what other symptoms you are having?

I have the hyperadrenergic version and my diastolic blood pressure is high too. 90-100 is where mine normally was while lying down and would rise by about 10 while standing. I would have spikes a few times a week where my diastolic blood pressure would get to 115-125. I take losartan and clonidine now and they keep things mostly under control, but I did have a spike this last week where my diastolic bp was 119.

Thanks again everyone for helping me get to the bottom of this. I did get tested for MCAD this last week and it came back negative. I just had my clonidine dosage increased since I posted this topic and it seems to have made a difference. Thanks for the aspirin suggestion. I will try it next time it comes on.

Thank you DG, that is very interesting. I will give the aspirin test a try next time it flares up. I feel so bad by the way for your daughter. I am glad you got some answers.

I have that too. The pins and needles sensation were very intense when my POTS was triggered, but has been minor over the last few weeks. I get it in the bottom of both feet, and then it kind of moves around a bit in my arms and hands, but it seems to be more prominent in my left side. I also occasionally get it in my scalp.

Wow LoLinda, that is awesome information. Thank you for posting.

Thanks DG and Amy, I appreciate the responses. I can't imagine watching my child go through what yours is going through DG. That sounds really rough. I did speak to my doc about it this week and next time my ear flairs up I'll be doing a urine test for MCAD. It will be interesting to see what comes from it. Thanks again!

I was diagnosed with H POTS a few weeks ago. One odd symptom that I have is that my ears can turn red and are warm to the touch. This has happened 4 or 5 times. It isn't consistent which ear turns red either. Sometimes it will be just one of them, sometimes both. It seems to be related to my adrenaline spikes as I have noticed that my blood pressure has gotten really when I've measured it after this happens. Has anyone else ever had this?