Blood Pressure Spikes

[hisshulamite]

Hello everyone.  I have been having these episodes and the doctors don't know what is wrong.  I have many of the symptoms of MVPS/Dysautonomia and found this site...so hoping someone here can answer this one question:  Do any of you experience episodes where your blood pressure spikes up for a few minutes and then returns to normal?  I see that many folks with MVPS/Dysautonomia have problems with low blood pressure...but I do not have that and take meds to keep my BP low and also take beta-blockers to help control high BP and for palpitations.  I have so many of the other symptoms that match...but this one thing seems so be counter indicative to the MVPS/Dysautonomia.  I live in the Tampa Bay area and don't see any docs around here on your lists...so thought maybe someone on here could help me out with figuring this out.  Thanks and hope everyone has a good 4th tomorrow.

[Heiferly]

I fell ill while uninsured as well.  My experience with insurance and dysautonomia now only spans Medicaid and Medicare.  There's a lag between when you get approved for SSDI (social security disability) and when you start getting Medicare for the disabled, so I had solely Medicaid for a while.  Now I have both.  In my opinion, Medicaid has better coverage than Medicare; in fact, I'd go so far as to say you're better off having just Medicaid than having Medicare AND Medicaid, because as soon as you have Medicare it becomes your primary insurer and starts making you jump through hoops and paying for things that you didn't pay for when you only had Medicaid (makes NO sense to have more insurance and end up paying for more, but that's how it works).  So yeah, that's my two cents on Medicare and Medicaid.  Others can probably tell you a lot more about private insurers.  

Oh, and if you're planning on applying for Social Security, Medicaid, etc., let us know and we can throw up some links here for you to find where we've posted tips elsewhere about how to navigate that stuff.  

If you want info on how I started getting medical treatment *before* I got SSDI/Medicare/Medicaid, let me know and I can explain that either here or by sending you a private message (like email but through the messaging system here on MedHelp).  All of my bills were eventually retroactively covered once I got approved for SSDI and Medicaid, so in the long run I didn't end up paying for any of it ... which is a good thing because I didn't have tens of thousands of dollars lying around, LOL.

Congratulations on your grandbaby!!!
-heiferly.

[doshee]

I have spikes of very high and troughs of very low. right now I'm trying to find a way to stop the occasional cardiac arrhythmias without lowering my BP. Oxygen helps. I am with Kaiser Permanente, on their Senior Advantage plan, and I have great rapport with several doctors, all of whom are doing their best with the symptoms in their respective specialties. Tests and referrals are readily available to me, which helps let me know what's going on, and helps them feel they are helping me! I don't think they're in FL, though, so not much help.

My sympathies......

[hisshulamite]

Thank you everyone for your helpful answers.  I am just at the beginning of all of this.  I don't have health insurance, so can't really get any testing anywhere.  I figured out what was going on by doing research on the web.  I am not really sure what to do at this point.  

On a more joyful note...my second granddaughter decided that she wants to be born a month early and is arriving sometime today.  So here's to baby Sophie who will need your prayers because older sister Bella (who is 3) thinks that she is the 'Queen of the Best of Everything' so little Sophie is in for a rough ride!  

Does anyone know of any particular health insurance that is better than others for getting the testing/treatment needed with these issues?

Thanks for all of your help...you are a wonderful group.

Happy Day,
Kim

[LA1989]

My son has the same problem. Today he was feeling really weak and looked pale so I took his bp and it was 133/113. 3 minutes later (still standing) it was much lower but his heart rate had gone up 30 bpm. We've had readings like 156/126 and 147/53.His blood pressure hits both ends of the spectrum every day. Our cardiologist finds my reports of his blood pressure to be "unlikely" yet in the next sentence says he believes those are true readings. He also finds it "unlikely" that Nick could have such narrow blood pressure. Frustrating.
He is also on Florinef for his low bp and the cardiologist wants to start him on atenolol for his tachycardia and high blood pressure as soon as we get the results from his 24-urine test back. I have found fewer instances of very low blood pressure since he started the Florinef, I must say.

[evo123]

I have POTS and have BP spikes also.  It can jump really high and then settle after a little while.  Mine also can drop low, mostly when I am laying flat.  I stand and it increases.

Dysautonomia in general can see fluctuations in BP both ways as can specific forms like POTS.  A drop in BP is not needed for several forms of Dysautonomia.  What other symptoms do you have and what makes them worse?

What testing have you had done?

[Audrey5512]

Hi
I live in Tampa as well. I had a test at Mayo where the BP is monitored every 15 minutes over 24 hours and 1/3 time it was very high, 1/3 normal, and 1/3 very low.  I have autonomic neuropathy. I too take beta blockers for palpatations/high BP but I also take Florinef to keep my BP elevated. Seems counter productive, but it works for me. I was told that dysautonomia causes erratic BP (high as well as low) but the low BP is the one that causes up problems (syncopy). My cardiologist is Dany Sayad from Florida Cardiovascular Institute.  I went to Vanderbilt and Mayo for the diagnosis of autonomic neuropathy. Hope this is helpful.