Blood pressure spikes

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When I was healthy my BP was always like 125/68. Since I’ve been sick I can have BP spikes of like 155/90 sometimes. It feels like because of anxiety from being sick and tired. Anyone have any idea about this? Is it because of anxiety? So many times I’m tired but wired as they say.
Another awesome symptom to go with the rest.
 

alex3619

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Forget anxiety. It wont help, but its not the cause in all cases. I have heard of BP spikes pushing toward 300 in ME patients. I might be starting to have spikes myself. Its some kind of dysregulation, and we literally do not have the investigatory science to be sure about what causes it. Its likely to be many different things, not one issue.

As a general precaution keeping calm is a good idea, as is avoiding stimulants.

I am hopeful that a general ME treatment, when it arrives, will fix many of these issues even if we still do not know the mechanisms.
 

Judee

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Are you taking any supplements? My mom gets horrible blood pressure spikes when taking b12 and folate. We corrected some things in her gut and she was able to add a bit back in from a multiple but could only handle 1/6th of the dose. She had to start on an antibiotic recently and she started getting the spikes again so had to stop the multiple again.
This might not be your situation but you could look at any things you are taking and see if there is a correlation by keeping a log or diary of when the spikes happen.
Also for her, we've found taking coq10, carnitine, and esp. NAC gets the bp to more manageable levels but she is just taking pinches of each of those a day and only doubles up when she gets a spike.
Of course, keep in mind that everyone is different so these may not work for your issue.
 
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No I don’t take anything. Like Alex said it’s some dysregulation probably that we know nothing about. My BP today is 121/71. Tomorrow it could be 149/91 or something.
It just feels like so many times I’ve got this unhealthy wired feeling. Feels like my anxiety gets cranked sometimes since I’ve gotten sick. I wonder if that is somehow related to insomnia and cognitive issues and weakness and muscle, joint pains and nausea and etc....
Man it just creates so many potential issues as you all know.
 

gregh286

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No I don’t take anything. Like Alex said it’s some dysregulation probably that we know nothing about. My BP today is 121/71. Tomorrow it could be 149/91 or something.
It just feels like so many times I’ve got this unhealthy wired feeling. Feels like my anxiety gets cranked sometimes since I’ve gotten sick. I wonder if that is somehow related to insomnia and cognitive issues and weakness and muscle, joint pains and nausea and etc....
Man it just creates so many potential issues as you all know.
wouldnt get too hung up on it. most people blood pressure varies quite a lot.
i see mine at 250/100 during exercise.
seen it at 120/80 sitting about.
but yea CFS can make it sway about a bit, i think its vessel receptors or something, you can tell when its "running" high
 

ryan31337

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Do you have any other signs of orthostatic intolerance @JBoneske?

I would consider looking into POTS (specifically the hyperadrenergic component) as anxiety, wired sensation & labile/orthostatic hypertension go hand-in-hand with that. Treatments can really help improve QoL.

Edit to add: the histamine issues Andy mention also overlap with HyperPOTS.
 

Countrygirl

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Forget anxiety. It wont help, but its not the cause in all cases. I have heard of BP spikes pushing toward 300 in ME patients. I might be starting to have spikes myself. Its some kind of dysregulation, and we literally do not have the investigatory science to be sure about what causes it. Its likely to be many different things, not one issue.

As a general precaution keeping calm is a good idea, as is avoiding stimulants.

I am hopeful that a general ME treatment, when it arrives, will fix many of these issues even if we still do not know the mechanisms.
This is of particular relevance to me as I have a diagnosis of malignant hypertension which is causing organ damage. It started when I was very hypotensive and my BP abruptly tripled. It has caused Meniere's, many hours of unconsciousness and has triggered angina.

My decades of ME hypotension has abruptly become stage 3 hypertension and persistent tachycardia with spikes of 250/140 plus. It used to be about 75/60 and I would black out even sitting up in bed.

Last week I was diagnosed with Acute Coronary Syndrome after losing consciousness a couple of times, with no pulse.

A well-known ME consultant in the UK...............is there more than one???.................said he finds his long- term ME patients are also developing abrupt high spikes.

I recently consulted Dr Byron Hydes encyclopaedia of ME, written about 25 years ago, and he writes that ME patients can eventually develop malignant hypertension (now known as hypertensive emergencies). He also says this: Transient hypotension was occasionally followed by an exaggerated overshoot of blood pressure to higher levels. These observations are similar to those described in patients with pheochromocytoma."

He also makes reference to hypervolaemic hypertension. In this case the patient needs an urgent infusion of saline which would reduce the blood pressure. This recommendation would appall a cardiologist, of course, as they do not understand ME and its impact on the cardiovascular system.
 
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Similar to the OP my BP was normal (around 120/70) when I was healthy. Around the onset of my other symptoms I also developed high blood pressure which fluctuates without any significant triggers. Now I typically am around ~150/90 but can be as low as 120/80 or as high as 170/95 at times. Mild exertion (something like standing and washing dishes) will lead to heart pounding and often my BP will be at the high end of the range mentioned above. I also find that I am usually on the high end later in the day (typically between 4-8) and on the lower end early in the AM.

I have been on several different medications (beta blocker, calcium-channel blocker, urinary retention, and diuretics) but none have seemed to help keep a constantly controlled medication and I am not longer on the calcium-channel blocker due to substantial edema. Right now I am still trying to find a medication/treatment that will help as I worry about developing some other issue as a result of the high blood pressure, but have found that relaxing and exerting myself minimally as the best way of coping.

EDIT: I have tested high for urinary normetanephrine twice on 24-hour urine tests and believe that my high blood pressure may be linked to this hormone production. My endocrinologist has done CT and MIBG scans for pheos but have come back clear, so she has reached out to Mayo Clinic for hopefully more insight on what testing can/should be done.
 
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I have been having trouble with my blood pressure spiking for some years now. I've even been tested for a pheochromocytoma, twice. I've been to 4 different cardiologists who do a bunch of tests and say nothing is wrong, but here take this pill. And when the pill doesn't work, they raise the dose to max or I get a new one.

Is anyone else on blood pressure meds? Which ones? Do they work?
 
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Similar to the OP my BP was normal (around 120/70) when I was healthy. Around the onset of my other symptoms I also developed high blood pressure which fluctuates without any significant triggers. Now I typically am around ~150/90 but can be as low as 120/80 or as high as 170/95 at times. Mild exertion (something like standing and washing dishes) will lead to heart pounding and often my BP will be at the high end of the range mentioned above. I also find that I am usually on the high end later in the day (typically between 4-8) and on the lower end early in the AM.
You just described how mine is! Even the afternoon spike. My dr had me take the meds at 3 in the afternoon but my BP would go even higher 2 hours after meds.

Strange how hearing someone else have the same strange experience as yours makes you feel normal. If only briefly.
 
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You just described how mine is! Even the afternoon spike. My dr had me take the meds at 3 in the afternoon but my BP would go even higher 2 hours after meds.

Strange how hearing someone else have the same strange experience as yours makes you feel normal. If only briefly.
I completely know what you mean! Especially when hypertension isn't exactly a common symptom of CFS, many reporting low BP. I'll try and keep you updated as I work to find something to help control my BP.
 

Sing

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I have had an occasional spike noted while at the doctor’s, though normally my bp ranges from normal—of course (when sitting or lying down) to so low I would faint if I have to continue upright. The occasional spikes in a medical setting I attribute to my anxiety being in this situation. I react like a pet usually does at the vet’s. My repeated experience is that medical people don’t understand my condition—they look at and test mostly irrelevant things in mostly irrelevant ways for my real condition, and keep ignoring what I need to be looked at and tested. I am so tired of this, though I understand why it happens.

Once while on the operating table for a small surgery requiring general anaesthesia, my bp measured at 300, which the surgeon ignored as if it were a result of faulty equipment. It had never been abnormally high in her outpatient office for a routine visit and she wanted to get on with the surgery, so she brushed it off and went ahead, with no adverse outcome.

Yesterday I had a tiny procedure at a hospital and clocked in at 173 over 103 or 113, don’t recall. Since they were concerned, I convinced them to take it after I had stood for 2 minutes and of course it was much lower.

There is no way I would take medicine for rare spikes when what I need is as much support as I can get for my daily experiences of lows to extreme lows. I agree with the idea that autonomic dysregulation in our cases might go either way irregularly.

It seems to me that medical people regard high bp as serious but very low bp either not somehow serious or real since this issue is more uncommon to them. It annoys me that they brush off so many of our common symptoms in the same way, when the reality is that these symptoms together, if not always separately are truly disabling. We all know this....