Any Advice? Bp78/66

[Roselover]

I can't stand up more than 2-3 min. I get flushed, chest tightness and my BP drops - I measured it once at 78/66 and today at 86/73. I've been on Cymbalta for three weeks. I just am at a loss at what to do if anything. Anyone have advice? My doctor has no idea. Can't do florinef, midrodine, Provogil, Wellbutrin... Maybe I just have to wait it out, but I thought I'd check to see if there is something someone else has found helpful.

~Roselover

[taylortotmom]

Have you talked with your doctor about Afrin? Some dysautonomia patients are using the nose spray with positive results to raise blood pressure. Again, iv fluids are what work best for me so is this an option for you? Sorry you are having such a rough time.

Carmen

[Ernie]

Hi,

Have you tries compression hose and/or Mestinon?

[briarrose]

At this point where I was having severe low blood pressure and unable to tolerate medications, Dr. Grubb recommended the IV Iron and Epogen injections. It took a couple of months before I felt better but today it seems like a different life time. That's not to say that I don't get fatigued or that warn down feeling. I also still battle low blood pressure but I can compensate better now.

You may want to call Dr. Grubb's office and ask them about pursuing this next.

[Poohbear]

Are you able to get your Dr to consult with Dr. Grubb or one of the other Dr's you've seen in the past?

Meanwhile, what about trying the techniques that Mayo and Vandy outline for times when you know you need to stand a litte--which is drinking 1-2 bottles of 16.9 oz each of water within a 10-20 minute time period and making sure your sodium intake is between 8,000 -10,000 mg a day.

Other than that, sometimes when my blood pressure gets really low a little caffeine will bring it up

I know how miserable you probably feel!! Hope you get some resolution soon.

Hugs

[Guest Mary from OH]

I was thinking maybe your electrolytes or iron are low, I think others may have eluded to that. Your BP is pretty close to what my normal is... around 80/60ish. What is your "normal"? Is that low for you?

You might try some Gatorade? and possibly adding salt? checking magnesium levels?

Just some ideas, but lots of {{{{HUGS}}}}}

[Roselover]

Thanks everyone. Your care means so much to me. As so many others have said - it's nice to know I'm not alone. Most of your ideas I've tried, but a few are new and I thank you all for your suggestions.

I talked to my PCP last night - she doesn't have any idea - but she is going to try to contact Dr. Grubbs office since I saw him last Jan.

Anyone have experience with Adderall increasing BP? Actually, I think the Epogen injections are next, but I don't look forward to all that it involves.

Thanks for all your support!

~Roselover

[gwen]

sorry to hear your feeling so bad. I have been on adderall for about 3 months. Istarted on 15 mg and I just didn't have the mental accuity I thought I should have. 20 mg gave me the mental but made me clench my jaw and I had some leg twitching so I went back to 15mg last week and I can say my blood pressure is still better. My dr was very pleased with it. I still have the drop when I stand up but over all it is up 10 to 15 pts. She mentioned I could still go back on straterra which was fab for mental acuity but I just haven't made up my mind if I want to go on yet another pill. I jiggle when I walk now.:-)

[persephone]

Have you tried any MAOI antidepressants? They are known to raise blood pressure; mine has gone from 100/40 to 119/88 in just 7 days. I'm also steadier and more able to stand, too.

[DancingLight]

Oooh Roselover,

I wish I knew what to say. Sometimes you remind me so much of me when you talk about all the med failures.

I was not able to tolerate the Cymbalta either...do you feel worse than before on it? I felt MUCH worse on it and it did not help my BP. I do better with Effexor XR or Celexa.

Waiting out anti-depressants for a bit (at least three weeks if you can tolerate it is good, but then you have to decide how long it's worth it...when the docs aren't helpful on this for me I usually ask the pharmacist b/c they know the drugs better). Did you taper up? Like, I know that as I increased I just felt worse and worse and more POTSy.

I have tried over 50 meds since I got sick and I feel so much for you the hope, the pain, the disappointment, the wondering when something will work...

Other folks had good tips about other things that might be going on. Do IVs help you?

Sending HUGS across the country to you!

Emily

[dianaD]

Hi roselover,

I was just on the phone to Mayo, and she said they were having the most luck by combining Mestinon and Midodrine. Have you tried that? It may be tough to get the dosages figured out, but I'm a big believer in needing something else to try!!

There is ALWAYS something else to try!!

[lthomas521]

Hi Roselover:

Sorry to hear that your bp is so low. The really bad thing is that your pulse pressure is so low. You have to have more than around 10 or 15 mm Hg difference between the systolic and diastolic pressure in order to get blood to your brain. What you are describing is what my nephrologist called "decapitation" (i.e., the blood supply to the brain is essentially being cut off).

Has your blood volume been measured? There are highly accurate ways of measuring blood volume now. If oral fluid loading and Florinef, etc. is not doing the job, you might ask for some transfusions of albumin or some other colloid. A colloid will stay in your vasculature longer. There's at least one woman with POTS who is doing much better after she started albumin infusions.

I haven't had the problems with pressure that low since I started taking the huge doses of B vitamins. I started to feel better within a day after starting the thiamine (500 mg/day). If your red blood cell mass is low, you will probably need to take extra B vitamins and iron in order to make more blood, even if you start taking Epogen. You might ask about trying the B vitamins and iron before you start Epogen.

Best of luck.

[Roselover]

Diana, I had a bad reaction to Midrodine, so can't do that. But thanks for the info.

lthomas, thanks that's very good info. I knew the real problem was the pulse pressure - it's no wonder I can hardly function. I will talk to my doc about what you said.

~Roselover