Supine Hypertension, Pulse Pressure, Med Questions

[lumpchp]

ok, so I have felt real bad lately. I have the "normal" pots episodes, followed by weird almost seizure like feelings, followed by really high blood pressure when its all over, and I sit down. Heres how it goes:

My normal bp is around 112/70, often though, gets really high when Im sitting, or lying down, around 138/96

normal heart rate around 60

standing, bp goes to 76/68 or so

heart rate goes around 150's

at around 1 minute, it literally feels like ALL the blood has left my body, vision goes black or white, its almost like my brain feels frozen, like im in slow motion, and my body decides its had enough and begins the shaky, Im going to turn myself off now thing.

If I can snap out of it in time, (which by now I usually can) I get down low, and wait it out.

After this kind of episode, my blood pressure immediately shoots up to around 176/138 or so, and my heart rate goes back to a nice 60.

So the thing is, Im extremely symptomatic lately. I feel like crap every day.

I had a bad reaction to fludrocortisone, and dont think I could do midrodrine either due to already having supine hypertension.

My cardio has mentioned adderall as a possibility, due to the blood vasoconstriction effect. Does anyone have experience on this? How does it affect your bp/hr? Something has to give here, I feel like there is no light at the end of my tunnel...

For those of you who also have narrow pulse pressure-

I definately see correlation between symptoms and pulse pressure being narrow. My question is, mine gets as low as 7 or 8! And this happens OFTEN. I do believe for us potsies it has to do with the blood pooling issue, and not actually being in shock, but this can't be good, right?? And why is it that the doctors either arent concerned, or they say, well your machine must have been wrong...

I know i've got a lot here, but if anyone has any input please reply...

[Mytwogirlsrox]

Gosh I don't know. Does your Dr think this is just POTS? Seems like you have a whole lot going on.. Have you looked into barcode flex failure?

http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4793

[lumpchp]

Have not had formal dysautonomic testing. After pheochromocytoma was ruled out, a neurologist did a poor man's ttt at my local ER, and gave diagnosis of dysautonomia. After seing a cardiologist who did the same ( not very thorough ) poor mans tilt, he told me I had POTS, but that I needed further autonomic testing due to many symptoms involving heart, GI tract, joint hypermobility, and basically all my bodily functions are out of whack right now.

I'll be hopefully getting scheduled at a teaching hospital soon that has QSART, and lots of other ANS studies available... But I've been waiting for 2 months now just for them to tell me that they can schedule me, I have Tricare insurance, and it is a huge ordeal to get authorization for such an extensive workup.

[Chaos]

Sorry to hear you are having such a tough time of it. Hopefully you can get in with a good autonomic doc soon.

I've had those narrow pulse pressures of 8 or 12 and it makes me feel terrible. And I love the way the docs say "your machine must be wrong". When I did my autonomic testing, the cardiologist insisted my BP couldn't have been 38/24 without me passing out..."had to be machine error." Then she did another TTT a couple days later and had very similar results and then her response was "you really should be passing out with numbers like that!" Ok, I'll try harder to pass out, yeesh! LOL

Are you able to do the compression stockings and abdominal binders or spanx type compression? Since you mention extreme chemical sensitivity and also mention the hypermobility and pooling issues, maybe those non-pharmocological types of interventions might help...especially until you can get in to see a specialist?

Personally I've found a very low dose of propanalol helpful to keep my HR down and then a moderate dose of midodrine helpful to keep my BP up.

Hope you can get some answers soon!! Sending you hugs!

[lumpchp]

Just did a search for the stockings, there are so many different ones! What do the numbers mean? Do I start with the smaller number?

[lumpchp]

I should add, I have times with bp and hr very low too. cardiologist doesn't want to try anything that may lower it either... A rock and a hard place :-)

[HyperPOTS8]

Lump, a narrow pulse pressure most often means your blood volume is too low, which is very common in dysautonomia.. This is likely contributing to your orthostatic tachycardia and low bp which can then activate the sympathetic nervous system and cause the high BP. Have you tried pushing your salt intake to 10 gm daily and pushing fluids? Also a graded exercise program like Dr Levine's?

[lumpchp]

I've just been doing lots of water, and extra salt on food, and drinking gatorade. maybe I need to start the salt tabs...

I have been trying so hard to just keep up with kids, I really haven't been able to focus on me. Looks like its time to do that.

[Chaos]

The numbers reflect the amount of pressure exerted by the stockings. The lower the number, the less amount of compression they will give. The general rule of thumb is that waist high are better than thigh high and thigh high are better than knee high. That being said, I can't tolerate the waist high so I went for a combo effect. Another member here had mentioned the Dr. Leonard's web site and I found that they had a really good deal on compression socks there. Much cheaper than anything I was finding elsewhere and they worked well for me. So, I got knee high socks there (they also have thigh high I think) and then I went to Ross/Marshalls/TJMaxx type places and got compression garments that go from thighs or hips to shoulders. (Spanx type stuff.) Personally, I tend to pool more in my lower abdomen (splanchnic vessels) than I do in my feet, so I have found the torso compression to be more helpful in general.

Like hyperPots said, the salt and water loading may be really helpful too. I know it's hard when you have little kids to keep up with and you aren't feeling well, but on the other hand, if you can put some effort into taking care of yourself, you might start feeling better and it'll be easier to take care of them.

The jumping between low and high BPs/HRs are not uncommon with dysautonomia...all part of the joy of trying to sort this picture out. But, if you've at least tried some of these things, it'll be helpful to be able to report that to the specialist when you see them as well.

[lumpchp]

thanks so much for the info. I ordered the knee high and waist high ones in the lower number to start... On the bright side, I got the call today from OHSU dysautonomia department and they were able to see me this Friday!I was so relieved, its just an initial consult, but its a good start. I'll keep you all posted :-)