Sudden onset of High Blood Pressure

Has anyone elsse had a very sudden onset of high blood pressure? I am usually low normal (105/65)/, but am now high-- 140/95. My BP has been going up over the last 6 months. I feel it in my head and eyes. I have many NF issues -- optic glioma, shunt, rods in back. I have appointments lined up with the endocrinologist, neurosurgeon, neuroopthalmologist. I know that NF can come with pheocromocytoma and renal stenosis. I have wondered if the tumor in my right leg might be putting pressure on a vessel.

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I wonder the same thing too. My blood pressure has been going up. Sometimes I use the machine at the supermarket
if I am not feeling well in the store. It is as high as 170 over 110 sometimes. his suggestion was for me to buy a bp monitor and randomly test myself. I think I will ask him if I can get one of those 24 hour heart monitors and have them monitor me correctly.
Sometimes I feel very weak and exhausted with cold sweats as my heart pounds hard. This happens several times every day. I am not sure if my bp problems are related to nf or the pain and all the doctors appointments spread out.

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Sorry to hear you are having problems. I hope things will get better soon

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I was dx with a pheochromocytoma some years ago after my BP went up, along with my resting heart weight. I also was sweating a lot, felt really anxious, and lost a lot of weight. The doctor had me do a 24 hour urine test. It showed I had a pheo, so I was prepped for surgery...had it removed, now all is well.
NOT saying that you have one, but if you're having other symptoms, it's a simple test. It's always good to get things checked with your doc....

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I have had blood pressure problems on and off for a few years if is only high at the Doctors office it could be Whit coat syndrom you ar nervus at the Dr office and the Bp goesa up just a thought or medical advise I am not a medical person

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Hi Tresham --
How high did your BP get? Was systolic or diastolic especially high? Or both? My diastolic is causing me more problems. Also, was it constantly high? Or variable?
I am always hot. I do sweat a lot at night. I have not been losing weight though.

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both went very high! I'm normally low - normal. At one point the diastolic was up at 95 when I was usually at 60/70. The systolic was at 150-170 when I was usually at 110-120.
At one point they thought that maybe I had an overactive thyroid because of the rapid weight loss. I was shaky, sweated heaps, cranky, anxious.... not a good place to be.

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my b/p was at 151/93. this was found by my neurologist as opposed to my primary care physician. he called my p.c.p. immediately while i was still in the office, and had me set up an appt. what the neurologist told me was it can be caused by renovascular - hypertension which can be nf related. he put me on blood pressure medication, toprol, which helped my pressure come down to 120/70, my normal level.

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Amber's blood pressure is normal but when her she had the hydrocephalus...her blood pressure was high. Is your shunt working properly? I know that sometimes they can stop working. Are you having any balance issues or issues with your hearing? Those were my daughter's symptoms when the hydrocephalus was at it's worst....just before her third ventriculostomy surgery. Although if you're in pain...your blood pressure will be higher as well. It's certainly something to look into. Good luck and God bless. xo

~Sue

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I was diagnosed with NF as a result of high BP. Turned out to be a fibroma pushing against a renal artery. Something similar might be happening with you.

Good luck

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Hi,

Get checked out for pheo ASAP.(you too Cardsharp) I had a bilateral adrenalectomy last April for bilateral pheochromocytoma.

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there is a test for artery blockage: a digital video subtraction angiography (d.v.s.a. for short) worth looking into with your primary care physician.

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thanks deb123. I'll tell my doctor. I was trying to tell him last time to check for it but I couldn't remember the name pheochromocytoma. I kept saying it's called pheo-something or pheyotosis-something. He didn't understand and never heard of it.
He also told me that neurofibromatosis is too much for him to learn and that I need to tell my neurologist when I see him instead.

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Definitely tell your endocrinologist about it. The adrenals are part of the endocrine system so he or she should be very familiar with pheochromocytoma.. If he or she is not.. find a new endo.

Deb

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The doctors just put in orders for blood and urine test. I'm also scheduled for MRI under anathesia (I don't do well being trapped) for them to look at the tumors on my ribs, and they said they will check out my adrenal glands at the same time. (scheduled in about 2 weeks from today)

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Hi cardsharp and Morris. Definitely sounds like a pheochromocytoma could be the cause - especially with the rapid heart beat sudden high blodd pressure, weight loss, etc. I had one during my pregnancy (and boy did that cause a rise in my doctor's blood pressure) 25 years ago which they could only treat with meds until after they took the baby a month early and then removed my right adrenal. Had all the same symptoms plus mood swings but within a couple of weeks of the surgery my bp went right back to normal and stayed there. Definitely get checked out by an endroconolgist since they handle that and find asurgeon experienced in this type of surgery. Renal stenosis could also be a cause but with the other symptoms, my guess is a pheo. Remember, I'm not a doc just speaking from experience. They never would have found it if I hadn't been pregnant, and they always take your bp,so my son actually saved me. Easy to find with lood and 24 hour urine. Good luck to you both. On a side note, there is a lot more research being done on NF and pheos so that is great news for all of us.

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