Hi everyone, i haven't been here for a while, i am almost 8 years post treatment and so far 8 years cancer free, i am seeing lots of new problems related to treatment and figured this is the best place to come in a world i find has little to no knowledge of my struggles.

It started 11th November 2011, while i was sitting down talking to my daughters teacher....i got very hot, flushing sensation pressure in my head and very dizzy...bp was 245/140 and it has bounced between 68/40 to 245/145 since.

For the last 3 years i have been having these blood pressure issues, it came on one day and has not changed i have been in hospital twice, urgent care so much so they know me by first name i have had soooo many tests i cant even write them all down, eventually i think i have discovered the issue....Baroreflex Failure due to neck radiation....getting an official diagnosis is near impossible.

anyone else experienced this? did you get a diagnosis if so is yours under control yet? any help would be greatly appreciated as i recently had a TIA in my left eye due to prolonged high BP .

Thanks Debz

I have fluctuating blood pressure the past few years, last month normal, more recently high, 193/130, and in that range. I have to see a doctor, as advised by HBOT, so I did some blood work, and going to my PCP on Monday. It was having othostatic hypotension a few months ago when my pressure would drop 20-30 points upon standing. I thought it was high BP, which it was, but tested myself with a home BP wrist cuff to see it suddenly drop. No place ever tested me for that. Before chemo in December, my oncologist wanted me to get cardiac clearance, which I did, but was supposed to have a follow-up with a chemically induced stress test, which I never did. I also seen a neurologist this week for my shoulder condition, possible brachial Plexopathy, and the doctor said it may be more than just that, and have to do an EMG, and EEG test.

Anyway, I don't know where I'll find time for all this testing. I do think it's related to all my radiation, and neck surgeries, who knows what else like my carotid artery, vagus nerve, CKD, and others, but currently have no definite answers. I just hope to get BP medication to continue HBOT, have oral surgery by the end of the month. I'm already at risk for ishemic events with my carotid artery removed, blind in one eye from optic ishemic neuropathy and Neovascular glaucoma, related to chemo Tx, and don't need any other complications.

I hope you find answers, and get the high BP under control ASAP!

Unfortunately this is fairly common. Blood pressure swings from too high to low can be pretty scary. I think its called baro-reflex disfunction. Its not something doctors can regulate easily. I wish I had an idea of something that could help you with this. Brian may have more info.

Thank you for your responses sometimes its just nice to know your not the only one.

I did get very hopeful when i learned about the Rheos System, but if you've had neck radiation you don't qualify for the study, fingers crossed someone will be able to help.

Being in NY, have you been to some of the top cardiac centers in the country like NY Presbyterian, Mt. Sinai, NYU, Lenox Hill...that are here? Also, I see in your timeline you're waiting on surgery? I would be surprised if they would do surgery if the BP is so high. That's what I'm afraid of, so may have to see the cardiologist sooner also, and may need their clearance anyway.

Even before any type of treatment, intervention, like Rheos System, a proper diagnosis would be a start.

Good luck.

Hi Paul, thanks for responding,
Yes i have been to most of those, i have seen so many specialists i have had a full cardiac work up i am on my final cardiac test right now i have been wearing a cardiac monitor for two weeks its sent direct every day to my dr...i have done stress tests been tested for pheochromocytoma 3 times mri's mra's all negative so far, i have no permanent damage from the BP but i know after my TIA that i'm just playing for time, i currently see a specialist in NYC hes a published hypertension specialist hes currently not sure what to do, i have to wear a BP cuff for 24 hours again just to prove that when im not stressed out my bp is too low...i'm running around 80/50 for the last two days...very hard to function.

Yeah the problem i have right now is the dead bone in my mouth is at a stage they hope can be shaved down if we leave it too long i will end up loosing my jaw....it's early days for me i have to hope a plan can be drawn up some how they can help me

crazy old life

Debz, well I'm glad for all that, follow-up that is, and I need to follow in your footsteps! Mine might also be kidney disease related, as nephrologist once said was the reason for the high BP a while back, but been so involved cancer wise, and now with the HBOT for the ORN prevention, teeth extractions soon, time is difficult to find, so I prioritize most of the time.

Thanks for sharing, and your knowledge is beneficial to others, including myself.

Debz, I've been going through that since around 2009 and even including almost all functions of the autonomic nervous system going completely haywire. Blood pressure and heart rate have been the most difficult to manage on an ongoing basis. Mine can go from 220/160 to almost nothing instantly. My heart rate started spiking with the blood pressure increases up to 160 bpms. It also has affected about every hormone loop.

After years of tying to stay on top of it, I don't think it is going to just repair itself and there really isn't a pill to fix it. In order to strengthen blood veins and the cardiovascular system, in general, I'm biking in the gym. Because body temps, heart rate and about everything in the body can be affected, it's a real hit and miss approach and even once the label is attached, there isn't a lot of successful treatment options.

It's important to understand what triggers the "episodes' and how to see them in advance and developing strategies that help before it's an ER event, as they have no clue and could make things much worse. I've chosen a different approach to all this and hopefully a successful one.