hypertension, not hypo
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SOC
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No anxiety here, either. I have wondered, though, if some anxiety associated with tachycardia is not true anxiety in the neurochemical sense so much as the person's interpretation of the sensation of a pounding heart. Or maybe the pounding heart can make a person anxious about their health -- so an effect rather than a parallel independent symptom. Or maybe not.
Just kinda wonderin'...
I wonder if this is why I get such a pain in my head when I have a head rush after standing. I always thought that was a normal part of head rushes for everybody, but my husband looked at me like I was nuts when I mentioned it in passing.
I think it's very possible to get better, though in my experience better or worse was pretty much dependent on how much I was overdoing it at the time (or how taxed by various things my body was in total - viruses, activity, stress, etc.). I have learned that I just can't push close to my limits without getting progressively worse. And my actual limits were WAY lower than what I thought they were. Doing more = getting worse. Doing less = getting better. I know that I'm the queen of saying that here, but it was a huge revelation for me, and really turned things around. ...Unfortunately, the recovery tends to happen much less quickly than the damage does.
If you're getting slowly worse, I would urge you to find ways to cut down the activity and stress in your life if you can, to give you more rest and recovery time. I know that's really hard in practice (understatement of the century), especially when you probably already feel like so much is missing, but I wish that I had done it earlier and stopped things from getting so low. Preventing the decline would have been a lot easier than it has been living with the consequences of having tried to keep going. It is NOT fun being bedridden, and that final slide can happen surprisingly fast.
Sherlock
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That's a good point. Once every one or two weeks my heart misses a beat, then the following beat comes very strongly. I do feel instant alarm then. (At that point, breathing in a certain way affects my vagus nerve and things settle down quickly.)No anxiety here, either. I have wondered, though, if some anxiety associated with tachycardia is not true anxiety in the neurochemical sense so much as the person's interpretation of the sensation of a pounding heart. Or maybe the pounding heart can make a person anxious about their health -- so an effect rather than a parallel independent symptom. Or maybe not.
Sherlock
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I recently had a period with a mild headache for several days. I thought that might be the typical low BP symptom, but when I checked myself with my cuff, I actually was a little high at 140 SBP. Maybe there's some second factor going on that sensitizes the arteries to feel pain from the hypertension. Come to think of it, magnesium can help relieve headaches in some. Magnesium can strengthen the collagen in/around arteries. I did start taking Mg several times per day and the headache is gone - though the SBP is the same.I wonder if this is why I get such a pain in my head when I have a head rush after standing. I always thought that was a normal part of head rushes for everybody, but my husband looked at me like I was nuts when I mentioned it in passing.
Hey, Sparrow: you talk in another post in this thread about not overdoing things and getting overwhelmed. I posted in too many threads and now am overwhelmed in keeping up with reading and replying
So that works in more ways than one P.S. I personally am much better than at my worst. I have found steady though slow improvement, the opposite of sliding inexorably downhill.
taniaaust1
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Thou I dont tend to go a lot of anxiety when my nor adrenaline goes right up (thou I can feel it do so).. I do get a lot of anxiety if I know Im about to collapse. The anxiety happens over that I KNOW I have to find a place to sit and lay and do it very fast, its an urgent desperation in needing to lay down.
(and I get very embarrassed when I collapse in public in places so that concerns me too. Its horrid to come too and find a crowd of people standing over you, wanting to ring an ambulance or someone already gone to call one.. and knowing that the hospital would just throw you out the door once you were there). Im suprised I dont get far more anxiety with the experiences Ive had.
(and I get very embarrassed when I collapse in public in places so that concerns me too. Its horrid to come too and find a crowd of people standing over you, wanting to ring an ambulance or someone already gone to call one.. and knowing that the hospital would just throw you out the door once you were there). Im suprised I dont get far more anxiety with the experiences Ive had.
SOC - that's a good insight I think. Bearing in mind that most of us will never get a dx of POTs, OI or Dysautonomia (particularly those of us in the UK under the useless NHS) a lot of people may simply have no idea what is happening to them. That must be pretty scary. Anxiety would be a reasonable response to that.
But then the quacks would say "it's anxiety" rather than work through that the anxiety was a reponse to the horrible symptoms.
Sparrow: I think you and others who have said "You are doing too much," are probably right. I am trying to work through how to do less - without feeling horribly guilty and utterly useless - but so far I'm not sure what to do; or rather what not to do. I'm working on this.
Thanks for the heads up on being bed ridden. Knowing that has kicked me to more motivation to finding a way to stop the decline.
SOC
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Shell -- here's another anecdote to help your motivation to rest. My 20yo daughter and I both have ME/CFS, but I was clearly symptomatic several years before she was. I did not rest enough largely because I didn't know how important it is and partly because I've always been a tough, independent, on-the-go person and rest was beyond my comprehension. However, by the time my daughter became continuously symptomatic, I had already learned a lot about the critical importance of rest. My husband and I insisted that our daughter cut back hugely and rest far more than she thought necessary (at first).
Now, after identical treatment, she is in remission while I'm improved but still substantially impaired. There are probably a number of reasons for this, but we are convinced that a large part of it is that she got sufficient (which is a LOT with this illness) rest from fairly early on and during treatment.
My husband and I often comment on how we wish I had just gone to bed (essentially) early on. It would have been tough on him at the time, but less so than the years and years of having me only minimally functional.
My 20yo daughter and I both have ME/CFS, but I was clearly symptomatic several years before she was. I did not rest enough largely because I didn't know how important it is and partly because I've always been a tough, independent, on-the-go person and rest was beyond my comprehension. However, by the time my daughter became continuously symptomatic, I had already learned a lot about the critical importance of rest. My husband and I insisted that our daughter cut back hugely and rest far more than she thought necessary (at first).Now, after identical treatment, she is in remission while I'm improved but still substantially impaired. There are probably a number of reasons for this, but we are convinced that a large part of it is that she got sufficient (which is a LOT with this illness) rest from fairly early on and during treatment.
My husband and I often comment on how we wish I had just gone to bed (essentially) early on. It would have been tough on him at the time, but less so than the years and years of having me only minimally functional.
xks201
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High blood pressure in a CFS/FM patient does not surprise me considering close to 80% of CFS patients had elevated levels of angiotensin converting enzyme. This is also seen in some other diseases like sarcoidosis.
In fact I even know of a doctor who treats CFS with Losartan (angiotensin receptor blocker) at 100mg/day. And he has had a good success rate. They have found brain diseases like alzheimers show high levels of ACE as well. I take Losartan and it has almost a nootropic effect. It is actually proven to improve memory. Excessive angiotensin stimulation partially inhibits acetylcholine release and dopamine levels are lowered as well.
I would try Losartan. It controls my BP. I was hospitalized with 210/130 BP and it was the only thing that brought my pressure down. A beta blocker could also work but that will just make you more tired unless you have POTS/OI then it might work with something fludrocortisone if you need it.
In fact I even know of a doctor who treats CFS with Losartan (angiotensin receptor blocker) at 100mg/day. And he has had a good success rate. They have found brain diseases like alzheimers show high levels of ACE as well. I take Losartan and it has almost a nootropic effect. It is actually proven to improve memory. Excessive angiotensin stimulation partially inhibits acetylcholine release and dopamine levels are lowered as well.
I would try Losartan. It controls my BP. I was hospitalized with 210/130 BP and it was the only thing that brought my pressure down. A beta blocker could also work but that will just make you more tired unless you have POTS/OI then it might work with something fludrocortisone if you need it.
Sherlock
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Well, if you do too much and then crash, you really become useless. So the only way to be unselfishly useful is to take it easy and be more selfish
taniaaust1
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Thanks for that info. All the blood vessels in my eye bursted one day causing me a completely red eye look, Ive no idea why. Is that the kind of thing which is being refered too? (if that was caused by high blood pressure, wouldnt the vessels in both eyes all burst?)
No i havent had a CT scan but have had MRIs and stuff (no idea if stuff like that shows up on those).
My doctors hadnt given me any advice at all about high BP eposides as they themselves dont notice them as they dont take my BP WHEN STANDING. (except one who did and saw it go up to 170/110 with a minute of standing to at which point i then had to sit. That one refered me onto an autonomic specialist.. who still didnt tilt table test me and didnt know anything about POTS with hypertension, so just told me it wasnt possible what he was being told and ignored the Dr David Bell info I'd taken in with me about all this).
If you have a good doctor to do orthostatic tests for this stuff and treat, you are very fortunate.
My latest CFS specialist is listening (thou he too hasnt sent me for tilt table testing so I can prove to everyone else it is going on, all the other doctors of mine who ignored what I was saying and didnt test).. and today gave me Clonidine to trial. This drug works differently then other hypertension drugs. Clonidine is a drug used in high blood pressure and for hyper POTS (high noradrenaline kind of POTS) and is supposed to help balance the BP. ***fingers crossed this will help**
Sherlock
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Hi, that sounds like subconjunctival hemorrhage; but I'd look at pictures online to compare.AFAIK, the weakest spots burst, and could be all in one eye or a single spot in one eye, or both eyes all or spotty.
http://www.bing.com/images/search?q=Subconjunctival+hemorrhage&FORM=HDRSC2
That's mostly harmless, but a retinal bleed could be very bad.
About the scan, I'd meant the brain - and infarcts do show up, though more quickly in an MRI than a CT. Bleeds show up instantly in either, so suspected stroke patients get a quick CT to rule out bleeding before anti-clotting drugs are given - else you kill the bleeding patient with the anti-clotting drugs..
I don't have insurance, hence also have no doctors. From hearing some stories here, maybe that's a good thing
Nielk
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If you have had low blood pressure throughout your illness and suddenly find an increase in your readings. I would look into the possibility that it is a reaction to a medications you are taking.
I had low blood pressure until this year when it started to rise. It turned out that this was a sign that I had developed a tolerance to Klonopin and was actually experiencing withdrawal symptoms while remaining on my dose.
I had low blood pressure until this year when it started to rise. It turned out that this was a sign that I had developed a tolerance to Klonopin and was actually experiencing withdrawal symptoms while remaining on my dose.
Sherlock
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taniaaust1
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Sherlock.. one ME specialist (it may of Cheney?) used to say that if a person has hypertension it is highly unlikely that they have ME/CFS as this illness tends to lead towards low BP
I think what is more known now is that some of us due to the illness can develop things like orthostatic hypertension eg ME specialist Dr David Bell used to find this in his patients,this dysfunction is caused by the ME. It can be just one of a range of dysautonomia things ME can cause.
(and I guess the rare odd person who if they didnt have ME/CFS would have even higher hypertension then they have now.. may still have hypertension... it has to manifest past the BP lowering affect of ME).
But yeah if someone has high BP (which isnt due to BP dysregulation .. high and low BP which ME can cause) , one does then need to strongly consider that one may have something else instead of ME.
I think what is more known now is that some of us due to the illness can develop things like orthostatic hypertension eg ME specialist Dr David Bell used to find this in his patients,this dysfunction is caused by the ME. It can be just one of a range of dysautonomia things ME can cause.
(and I guess the rare odd person who if they didnt have ME/CFS would have even higher hypertension then they have now.. may still have hypertension... it has to manifest past the BP lowering affect of ME).
But yeah if someone has high BP (which isnt due to BP dysregulation .. high and low BP which ME can cause) , one does then need to strongly consider that one may have something else instead of ME.
taniaaust1
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Thanks for that..I wish I'd got a photo when I had it.. It was quite bad, worst then half the pictures at that page but yeah that's what it must of been. Im glad I nowdays have a camera to take photos of things I get.
Sherlock
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Yes, you're right that it is Cheney who said your point #1. he also said your point #3, though I had normal BP before my original bad cold that started things off, then had sudden onset hypertension with orthostatic hypotension. As I write this my BP is normal - though when I get a cold or some other flareup, my BP goes high temporarily again. For the record, in case someone similar reads this in the future: it has to do with diminished NO generation.
Thanks, Tania, for the pointer to Bell. A page on Bell and BP: http://www.ncf-net.org/forum/restheory.html says "Thus far, in his large patient population, he has only seen 1 or 2 that have been completely normal [in BP] upon testing."
The orthostatic diastolic hypertension he mentions seemed counterintuitive - until realizing that with low blood volume, the body tries greater pumping force and frequency to get blood up to the brain, and when that doesn't work it has no other recourse but to tighten up blood vessels systemically to overcome the low blood volume. I did start out with mainly high DBP, but now when my BP goes high it is isolated SBP. Weird, I must be in some different phase. Still, the temperature dysregulation, swollen nodes and insomnia never go away - and I get headaches very often now.
C'est la vie.
I was dx with hypertension 2 years ago when I accidentally discovered it. I was teaching my oldest son how to take BPs when it showed mine was shockingly high.
Docs were unconvinced I had hypertension because I don't tick the right NHS boxes for it (don't smoke, don't abuse alcohol, eat healthy, blah blah). Nevertheless my present GP sent me for further tests and after a 24hr Sphig I was dx hypertensive.
Before putting me on Candersarten the doc tried to get me off the Amitrip which he thought may have been the culprit.
Unfortunately I was just coming out of a seriously major flare and coming off any pain relief was more than I could cope with. I ended up with cyclical vomiting and after a long day in A&E I went home with a months antiemetic and went back on the Amitrip to get the pain under control. In A&E I was wired to a sphig that took BP every 15mins. This was pointless as no one checked it, but I saw it going high and dropping like a stone every so often even though I was lying down.
Anyway, upshot is I am still on Amitrip which can cause hypertension but it doesn't explain the sudden drops in BP and the basic higgle-de;piggeldyness of my BP along with POTS.
So do I have ME? Or do I have Dysautonomia? Or, as some researchers are now saying, the fact that I have dx of Fibromyalgia and ME and now POTS, - is all that Dysautonomia really?
And if it's and ANS disorder (and I am leaning to that view at present) surely patients BPs could be hypo, hyper or (like mine and Tania's) all over the darned place.
Wondering??
Sherlock
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That sounds hormonal. I suppose you've considered the very rare and unlikely pheochromocytoma for a DDx. Though that'd more be in line with having sudden sharp rises, rather than being usually high with sudden drops.Anyway, upshot is I am still on Amitrip which can cause hypertension but it doesn't explain the sudden drops in BP and the basic higgle-de;piggeldyness of my BP along with POTS.
So do I have ME? Or do I have Dysautonomia? Or, as some researchers are now saying, the fact that I have dx of Fibromyalgia and ME and now POTS, - is all that Dysautonomia really?
And if it's and ANS disorder (and I am leaning to that view at present) surely patients BPs could be hypo, hyper or (like mine and Tania's) all over the darned place.
There's also that ACE angle, as regarding your ARB Candesartan, which I usually forget about.
I know that my BP goes up when I get sick, and I also lose my usually good exercise-induced vasodilation, which would be from NO. One time, early on in this disease, I was afraid that my arteries had lost their ability to dilate, as if from some super fast onset of atherosclerosis. So I got hold of a nitroglycerin tablet - my BP dropped like a rock, wow. Niacin flushing also results in a BP drop. If the niacin causes great pain in my stomach, then BP also drops a lot.
Today, my BP is normal again. When I get sick again, it'll most likely go back up.
Regarding: do you have ME? Do you have perpetually swollen lymph nodes? Alcohol intolerance? PEM?