Narrow Pulse Pressure, Low Bp, And Low Heart Rate Surprisingly
Posted 29 October 2009 - 05:09 PM
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.
Posted 29 October 2009 - 06:36 PM
Posted 29 October 2009 - 06:46 PM
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.
Posted 30 October 2009 - 12:47 PM
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.
Posted 30 October 2009 - 11:50 PM
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.
Posted 31 October 2009 - 12:26 PM
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.
Posted 31 October 2009 - 01:19 PM
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!
Posted 01 November 2009 - 10:53 PM
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.