Narrow Pulse Pressure, Low Bp, And Low Heart Rate Surprisingly

[Maxine]

Is my POTS taking a dump on me? I feel my heart thumping harder when I'm trying to do a bit a physical activity while staning----.i.e.-----> loading diswasher, folding clothes/towels, cooking a lite meal, or just trying to walk around the mall a bit. I do get the usual switch going off bit as I always do when I have been upright too long----even sitting without changing position. This is different. It's seems to come on more quickly, and I feel like I'm in heart failure-----------but I'm obviously not according to my last cardiac ECHO. My heart rate is unusually low when I'm not upright too-----low 60s. This is unusual for me as I tend to hover around low 70s to mid 80s on my beta blockers. I also get the flu like feeling on and off. It gets to the point of making me paranoid on weather or not I'm getting the beginnings of H1N1. This scares the heck out of me. I can not imagine getting that on top of this.

My mid spine is so on fire, and I still have the usual problems with my neck----you have heard about this already, so I won't rehash this. I'm wondering if the stess on my upper and mid spine is causing these other problems secondarily.

This is so far over my PCPs head, and I haven't seen Dr. Grubb in quite a while. I called his office for a prescription refill, but still have not made an appt. I really do need to see him. However, I also need to see my geneticist next week on Friday the 6th first. He can write up a clinical report for Dr. Grubb that may be of some help to him.

I'm wondering if I should just call Dr. Grubb's office to get the appt. set up?

Wondering why these pulse pressures are so narrow. The pain in my mid pack gets so intense it takes my breath away.

Maxine :0)

[sue1234]

Yea, I think it might be time for an Dr. Grubb appointment. It is hard when all of this dys. stuff goes along with other conditions. Let us know what he says. As far as pulse pressure, I had that this past weekend when I tried the clonidine patch. I looked it up and two causes are aortic stenosis and low blood volume(surprise, surprise!!!). I just had probably $15,000 worth of heart tests and I don't have aortic stenosis, so I'm thinking low blood volume for me--AND I HAVE BEEN ALMOST SCREAMING TO EVERY DOCTOR THAT I FEEL LIKE I DON'T HAVE ENOUGH BLOOD VOLUME! I would really like to have one of those nuclear tests that measures blood volume. I live only 3 hours away from a Texas health area that does this, I wish someone would order it!

[busymom]

I went to my cardiologist for the very same reason yesterday. My hr was dropping into the low 50's when supine and I was becoming very short of breath and had a tight sinking feeling in my chest. My doc did an ekg, talked with me, and did an exam. He told me everything looked good but he has me using a holter monitor for two days just to be sure he's not missing anything. Then he asked me if I had been exposed to anyone who had been sick. Well unfortunately my kids have been sick with the flu. He is positive that my dysfunctional autonomic system is yet again causing me problems...this time because of the stress of the flu on my body. Today I woke up and I had head conjestion and that general sick feeling.

As far as H1N1...my kids have been diagnosed with the flu. The best thing I can say as both a mom of 5 kids and a nurse is take care of yourself...Don't wait until your sick. Get as much rest as possible, stay well hydrated(provided your not on fluid restriction), and wash wash wash. Also try not to stress about what could happen and just focus on the good...we all know we have enough to stress about with whats already taking place in our bodies.

Also I would make an appointment asap. We all know it takes forever to get seen when you really feel bad, and even if he doesn't change your treatment sometimes it just helps to be reassured when your feeling so bad.

God Bless!

busymom

[goldicedance]

M,

Sorry you are going to feel rotten.

My former (i.e., I moved from Washington and she has since retired) called me this Saturday to see how I was doing. Can you believe that? That's more than virtually any other doctor would do.

She retired not only because she wanted to spend more time with her family but she was then experiencing health problems. She had horrible neck pains, headaches, double vison, lightheadedness, and rapid heart rate. It turned out she has a chronic spinal fluid leak. She had a "patch" procedure done in California (she traveled to have it done by this specialist) and is now doing much better.

She thinks I should have that checked out.

Have you been evaluated for a CSF leak? All that neck surgery makes me think some of that may be going on.

Feel better!

Lois

[Maxine]

Thanks for your replies and support!

I thought about bringing a possible spinal fluid leak up to my neurologist at the Cleveland Clinic. Hmmmmm, it will probably be dismissed though, even though I have so many problems at the cervical/cranial junction, and this weird left vertebral artery missing in my brain, but not in my neck going on. I also have the other problems mentioned in my signature line. I'm trying to be brief because it's late. I'm so wiped out, and can't begin to tell you the day I had today-----I'm basically down to shuffling like an old lady lady, and have such weird pain on the right side of my head I'm wondering if i'll wake up mornings.

The swelling on the right side of my neck near clavicle---(looks like edema) has been there since may, and of couse this unexplained mastoid fluid, but never had a middle ear infection. What is this fluid? My friend from Calf. who has a very simular problem, but more advanced has done a lot of research, and she found out she has high CSF pressure, and one surgeon mentioned a shunt needs to be put in, but when she went to a big university hospital in Calf. they blew her off. You won't believe all the things that go wrong with pannus growth on the odontoid bone---as it presses on the brain stem, crowds the posterior fossa--(the opening that connect brain stem to spine), and it can also irritate the vagus nerve.

My vision is getting so blurry, my speech is slurring--------ugggg, I can go on, but I won't.

I have only had one cervical spine surgery in June 2002. I have been diagnosed with all this other stuff since, including partially blocked CSF flow posteriorly.

I complained about one surgeon at the clevelan clinic to the ombudsman who was a woman. They sent me a letter of apology, as the orthopedic surgeon suggested aerobics as a therapy, and completely blew me off otherwise. Can you imagine with my EDS and spine instability? Not to mention my other joint instability that I don't discuss as much becuase everything else is so overwhelming.

Thanks again for your kindness and support--- I'm still trying to get someone to listen to me, and also trying to get into see Dr. Grubb. Pulse pressures are still low, and heart rate seems low for me still.

Maxine :0)

[Jen2533]

I'm so sorry you are going through all this. I have been on short term disability due to not being able to walk 50 feet without a break, double vision, extreme weakness, unexplained weightloss, and fatigue so bad I can't get out of bed for 2 hours after I wake up. It is extra rotten when it feels like the medical establishment won't listen. When this all came to a head and I ended up in the hospital in June for three days it had looked like I had a stroke. My left side of my body didn't work, my right side of my face fell, and I couldn't open my left eye. My the time they had discharged me, they had ruled out a stroke but I still couldn't walk unassisted, I fainted in the hospital on morning three, I couldn't tie my hair in a ponytail or cut my own food b/c my left hand was so weak. When they discharged me can you believe that they said I could drive and go back to work the next day and said it was likely due to anxiety or a migraine (even though I had no head pain which is rare for me as a real migraine sufferer). I left feeling crushed and deflated. I felt like no one except my husband was taking me seriously. Thankfully when I followed up with my GP he realized something was very wrong and made a promise to stick with me to get this mystery solved. He is the only reason I even subject myself to more doctor's appointments. I have shed so many tears after being treated like a whiner or someone who wants to milk the system. Excuse me, I worked full time from home with one hand that could type and one eye that could see for 4 weeks. After they put me on oxygen I went back to the office, so humiliating having to carry my air around with me at the age of 32 but I did it, I didn't want to end up on disability but months later when they still had no dx or treatment and I was chronically late getting to work I told my GP I needed some time off. He was surprised I didn't ask sooner. I guess my point in this for you is two-fold, 1 - you are not alone in your pain and frustration and 2 - there are doctor's out there who actually went into medicine out of compassion instead of ego (thought they are few and far between), find one that can be your anchor and go from there.

On a side note, about the narrow pulse pressure - this intrigues me b/c when I was hospitalized my bp remained low which has been the norm for me. One night it went down to 78/49. The nurse came in and wanted to restart the IV, I really didn't want that b/c they had already over hydrated me and I was still all swollen from that. I mentioned that I skipped my adderall dose and asked if she could bring me that and recheck me 5 minutes later. Instead she paged a doctor and 10 minutes later came back and said they didn't treat low bp with adderall (in the amount of time it took her to do that she could have given me my dose which was over due anyway but whatever). They pushed the fluids and got it up to 90/65, then finally agreed to give me my medicine. The next time the cuff inflated the machine read 110/65 which is my normal bp. I was so mad. After i saw my GP it was 90/80, he thought that was strange and got another cuff - same reading, he had me come back the next day and it was normal.

My question is what does it mean when the pp is narrow? I have had a handful of similar readings at various appointments.

Jen

[potsgirl]

Hi Maxine,

I know how scary it can be when your BP is low and you have a narrow pulse pressure. I usually only have about 10-15 (ie: 75/62) points between my systolic and diastolic readings, and it makes you feel pretty nasty. I wish I had some great knowledge to give you, but all I can offer is support, prayers, and positive thoughts that you'll be feeling better soon. And get in to Dr. G!

Cheers,

Jana

[Maxine]

Thanks Jen and potsgirl--

I'm just not believing this OI is getting so bad lately. I should understand that with my other issues getting worse, my OI/POTS usually follows. I'm not even wanting to see Dr. Grubb. He's a great doc, but it's just the point of seeing ANOTHER doctor. Fortunately he's in the same town as I am, so this is one doctor I don't have to travel to see. I know so many of you have to travel to see him, and I do know how it feels to travel to see different doctors----It's not fun.

Another symptom I'm getting is very clumsey hands, and my spine is buzzing when I over do things----i.e.----->trying to run a couple errands, walk a bit in the mall, or make some dinner. I always tell my husband how I feel lucky to have "steady eddie" hands, because his shake from familial tremors when he tries to do fine hand movements. I can put on mascara in a moving car! I can still do that, but I'm having trouble gripping the mascara. Another thing I have trouble with is putting my hand around a large cup to drink whatever is in it-----------I most definately will drop it. I have to put my other hand under it. sometimes I drop things that are feather light---(I don't understand this). It's like a sensory thing or something. Once I have an object in my hand that I can handle, my hand is steady. Another thing is my vision when I try to focus. It gets so blurry, and sometimes the words move around.

Anyway, things are not going very well, and the narrow pulse pressures concern me------------however, I'm plugging along.

Thanks again for all your support and understanding.

Maxine :0)