hypertension, not hypo

[taniaaust1]

I agree with what Sherlock said.. dysautonomia thou it causes sooo many of the ME/CFS symptoms eg IBS, headaches, tiredness, etc.. things like abnormal immune stuff can help one to tell one dont "just" have dysautonomia.. eg swollen glands, sore throats help point to ME. Thou I do have very bad dysautonomina.. its obvious I have more then that due to all the rest of the symptoms I get... in my case my white blood cells are only just within normal range and never really raise (many ME/CFS specialists would say that points to chronic infection). I also have a history of severe EBV (also did have FM at the start of my ME). I also have abnormally low cortisol etc.. a lot of things which point to me having more then just dysautonomia. Developing many food intollerances would point to ME.

Dysautonomia thou can cause some PEM as sometimes the effects of blood not getting to the brain enough can end up leaving one with after affects depending on how bad the dysautonomia was affecting one at the time (thou yeah usually recovering from a dysautonomia crash is far faster then ME crash recovery).

Im not sure if one could use alcohol intollerance to help distinguish between those who just have dysautonomia and those who have ME and dysautonomia.. as I think many people who just have dysautonomia have issues with alcohol too. (does alcohol affect the autonomic system?)

Without dysautonomia testing, I dont think most doctors would be able to tell a severe dysautonomia case with that alone.. apart from ME/CFS .. its the kind of thing only a good specialist with good understanding of dysautonomia could distinguish. .. There would be many people in the ME/CFS communities with a CFS diagnoses which in fact ONLY have dysautonomia which has gone undiagnosed (which is a real pity as many of those people otherwise may be able to be being treated and doing much better).
Same wrong diagnosing goes with FM..some with only FM have been wrongly given a ME/CFS diagnoses due to so much overlap in the symptoms eg FM people are more prone to migraines, IBS, sleep issues, fibro fog and fatigue...

If someone lives in England and has both dysautonomia and ME.. probably would be a good idea to get focus on the dysautonomia causing most of your symptoms as far as diagnoses goes and try to get the ME/CFS diagnoses wiped so you get treated better by doctors.

 

[Shell]

That sounds hormonal....

Regarding: do you have ME? Do you have perpetually swollen lymph nodes? Alcohol intolerance? PEM?

Who you calling hormonal!
I hadn't considered that very long word dx. Not even heard of it until now. But, like you say, it seems unlikely.
One thing with my bizarre BP is that when I was in hospital in July it was normal all the time. I am sure that's because I was on bed rest. Even though I had an infectio, I felt reasonably ok for that day.

I don't have "perpetually" swollen lymph nodes. They are sore all the time but the swelling varies from nothing to what I call my Frankinstein-plague nodes when my neck is so swollen and my armpits and under my clavicals are swollen and hurt like hell. Never have much problems with other lymph nodes though.
Yep, alcohol is bad- it seems to trigger my inability to control body temperature so I either start shivering or burning. One glass of wine is enough.
PEM - oh yes!! One of the most upsetting times I've had was doing the flowers for a friend's wedding and being so ill the next day I couldn't attend! If researchers could find how to stop PEM I'd kiss'em on all four cheeks.

 

[dannybex]

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.

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.

That makes sense to me as well. My bloood pressure was always lowish, then low normal, but during the last 2-3 years it's inched up slowly but surely to where I now had to cave in and was prescribed lostartan, as my BP was 170/90-somthing. (10 minutes later it was 145/80-something, but still too high). I hate taking meds, but also don't want to have a stroke, and in hindsight, especially over the last 6 months to a year, I can hear and feel the blood being 'forced'...pumped really hard to get to my brain -- at certain times of the day.

As for Cheney, I think it's important to keep in mind that he typically sees the sickest of the sick...typically bedridden. That may account for his statistics...?

 

[Sherlock]

That makes sense to me as well. My bloood pressure was always lowish, then low normal, but during the last 2-3 years it's inched up slowly but surely to where I now had to cave in and was prescribed lostartan, as my BP was 170/90-somthing. (10 minutes later it was 145/80-something, but still too high). I hate taking meds, but also don't want to have a stroke, and in hindsight, especially over the last 6 months to a year, I can hear and feel the blood being 'forced'...pumped really hard to get to my brain -- at certain times of the day.

As for Cheney, I think it's important to keep in mind that he typically sees the sickest of the sick...typically bedridden. That may account for his statistics...?

Your mention of losartan reminds me of the use of olmesartan/Benicar in the Marshall Protocol. Whether Dr. Marshall's protocol is good or bad, I don't know. But here's a "concerned" comment from Cheney (2007) on use of an ARB in CFS:
http://www.natmedtalk.com/f50/1643-marshall-protocol-stay-away-one.html

Danny, have you noticed that you "get sick" more or less often since being on losartan?

Oh wait, here is Marshall in 2012:

Losartan is a VDR antagonist. It will not induce recovery, and it will displace Olmesartan from the VDR, stopping Olmesartan from doing its job properly

When people are weaning off the MP we suggest Valsartan, which is well documented in the MPKB

http://www.marshallprotocol.com/forum39/11829-11.html

He's saying that while olmesartan is a Vitamin d Receptor (VDR) agonist, losartan is an antagonist. So according to that thinking, a dampening of immune response via losartan might give symptomatic relief but also lets the intracellular pathogens go undefeated.

 

[dannybex]

I've only been on it for 3 days, and got very uncomfortable 'restless legs' when I increased the dose -- to the "regular" dose on the 2nd day. So I'm down to half a dose, and may try to go off of it and treat it more directly/naturally, if possible.

My "good" cholesterol -- the HDL -- has been low for about 3 years as well, but the doc called w/test results yesterday, and it was even lower (about 1/3rd of what it should be). I'm hoping (guessing) that perhaps that may explain why my BP has gone up (and also why I can't tolerate much fat in my diet) -- because the HDL is so low that it isn't removing the LDL cholesterol from my bloodstream -- resulting in narrowed arteries, and thus higher BP?

Time to get some high quality fish oil, even if it makes my gums bleed (which is why I avoided using it in the past).

 

[MeSci]

Just seen this thread and want to comment on several people's postings - excuse me for not quoting but it might get too complicated! I too get inexplicably damp feet - but cold. It only seems to happen when I am wearing my trainers, maybe because they don't let my feet breathe.

Previously normal BP, then discovered to be sky-high (systolic over 200!). I wasn't taking any drugs that could have caused it. I am now taking ACE inhibitor which works well and seems to be well-tolerated, but have been able to stop a couple of times for a few weeks or months, then BP went up again so started taking again. BP fluctuates wildly, and pulse pressure tends to be high. No hypotension as far as I know.

I seem to have POTS in reverse! I get tachycardia when I lie down at bedtime. It has decreased significantly since reducing carbs and taking some supplements, and was completely absent for a while until I accidentally increased carbs again for a while. It does seem to be adrenaline-related, as I get an instinctive anxious reaction, which I have learned to dispel quickly, and the diet/supplements have also resulted in a generally calmer mood, which is really novel for me as I have been anxious for as long as I can remember - maybe I was just on the wrong diet for my phenotype all along. I spent a lot of time trying to figure out whether the tachycardia was caused by anxiety or whether the anxiety was caused by tachycardia, and I think it was the bedtime episodes that clinched my conclusion that it was the latter. The tachycardia often happened when I was at my most relaxed, about to fall asleep. Re what Alex says about antihistamines, they don't seem to have an effect on my bedtime tachycardia.

Taniaaust1 - I had severe Parkinson's-like tremor on two occasions, along with other ghastly symptoms including dizziness, nausea, muscle spasms, visual impairment, inability to speak, stand or hold things properly, etc. The first episode was dismissed by my GP (over the phone) and then the paramedics (after I called them in desperation) as a panic attack. It turned out to be due to dangerously-low blood sodium. A bit lower and I could have died, and I bet they wouldn't have mentioned ME on my death certificate. The second time I spent 4 days in hospital, which is when the severe hyponatraemia was discovered - 3 years after the first episode. I increased my sodium intake after learning this, and it has not increased my BP at all.

I found that a good immediate treatment for the tremor and muscle spasms was sedating antihistamines diphenhydramine and chlorphenamine, probably due not to their anti-histamine properties but to their anticholinergic ones. They also reduce nausea.

Cholesterol - mine is pretty good. HDL nice and high.

 

[taniaaust1]

Taniaaust1 - I had severe Parkinson's-like tremor on two occasions, along with other ghastly symptoms including dizziness, nausea, muscle spasms, visual impairment, inability to speak, stand or hold things properly, etc. The first episode was dismissed by my GP (over the phone) and then the paramedics (after I called them in desperation) as a panic attack. It turned out to be due to dangerously-low blood sodium. A bit lower and I could have died, and I bet they wouldn't have mentioned ME on my death certificate. The second time I spent 4 days in hospital, which is when the severe hyponatraemia was discovered - 3 years after the first episode. I increased my sodium intake after learning this, and it has not increased my BP at all.

I had those other symptoms you mentioned at that time too. That is quite a worry what you said there as I have had abnormally low sodium one time come back on one of my blood tests (but doctor didnt worry cause it wasnt out of range a lot).

Its like the time when my glucose was low enough to put some people into unconciousness and I was mostly bedridden at the time..but a doctor ignored my abnormal readings and didnt even tell me I had hypoglycemia.. I only found out years later when I got copies of all my test results

 

[MeSci]

Doctors can be very poor at diagnosing the cause of hyponatraemia, and mine insisted that I was overusing desmopressin and/or drinking too much water, despite my protestations that I was not doing either. Despite the fact that I was dehydrated (I was clearly losing fluid and sodium together in urine) they put me on fluid restriction, so that I left hospital with severe constipation which was so bad it caused hallucinations. They refused to prescribe a laxative, so I had to do some rapid research into what herbs might help, and fortunately found that there was one in my garden that did the trick effectively and without adverse effects - feverfew.

There is some info on hyponatraemia here:

http://www.patient.co.uk/doctor/Hyponatremia.htm?oo=0

I also had acute (but not severe) hypoglycaemia when admitted to hospital, but didn't find out until weeks or months later when my long battle for copies of my test results was finally successful. (The hospital had twice referred me to their LEGAL department when I asked them for copies!)

So I guess I was also losing glucose in urine (glycosuria).

After numerous bad experiences with doctors, this one was the final straw and I lost what little faith I had in them, and avoid them as much as I can.

 

[taniaaust1]

I also had acute (but not severe) hypoglycaemia when admitted to hospital, but didn't find out until weeks or months later when my long battle for copies of my test results was finally successful. (The hospital had twice referred me to their LEGAL department when I asked them for copies!)

So I guess I was also losing glucose in urine (glycosuria).

After numerous bad experiences with doctors, this one was the final straw and I lost what little faith I had in them, and avoid them as much as I can.

Hypoglycemia can be caused by a person having high insulin or abnormal insulin spikes (a prediabetic state, progresses to diabetes.. and the high insulin can actually give a person symptoms thou most doctors will tell you it doesnt). I have hyperinsulinemia. I suggest you to see if you can get a 2hr Glucose tollerance test with the INSULIN included to make sure you havent got your insulin causing you issues. (5 of my ME symptoms improved with one entirely vanishing after I started treating the high insulin issue once I found out mine was abnormal)

 

[taniaaust1]

I've only been on it for 3 days, and got very uncomfortable 'restless legs' when I increased the dose -- to the "regular" dose on the 2nd day. So I'm down to half a dose, and may try to go off of it and treat it more directly/naturally, if possible.

If you have issues with your BP drug consider clonidine, that's what I started taking both for my high BP spikes (up to 170/136) and dr gave me for my hyper POTS as this drug lowers nonadrenaline/adrenaline... so can be good for hyper POTS (thou it isnt helping my POTS)... it can help anxiety and issues like that too. It is also being used off label for insomnia, neuropathic pain and migraines. (It has helped my sleep.. I used to get adrenaline rushes during the night.. I also now are able to get up earlier due to it).

Anyway..ive found it a handy drug as it is treating other things then what I started taking it for http://en.wikipedia.org/wiki/Clonidine

 

[MeSci]

Hypoglycemia can be caused by a person having high insulin or abnormal insulin spikes (a prediabetic state, progresses to diabetes.. and the high insulin can actually give a person symptoms thou most doctors will tell you it doesnt). I have hyperinsulinemia. I suggest you to see if you can get a 2hr Glucose tollerance test with the INSULIN included to make sure you havent got your insulin causing you issues. (5 of my ME symptoms improved with one entirely vanishing after I started treating the high insulin issue once I found out mine was abnormal)

As far as I know the hypo was just an acute episode. Since I've been on a low-carb diet my blood glucose has been pretty normal, although I did have hypo-type symptoms when I briefly tried taking Coenzyme Q10 100 mg. I didn't have the glucose monitor before going low-carb so don't know what it was normally like then, and the battery was flat when I had the hypo symptoms associated with Co-Q10, but I am fairly sure it was that as my BP was normal. As my father had Type 2 diabetes it's something I am always aware of.

How are you treating your high insulin?

 

[dannybex]

If you have issues with your BP drug consider clonidine, that's what I started taking both for my high BP spikes (up to 170/136) and dr gave me for my hyper POTS as this drug lowers nonadrenaline/adrenaline... so can be good for hyper POTS (thou it isnt helping my POTS)... it can help anxiety and issues like that too. It is also being used off label for insomnia, neuropathic pain and migraines. (It has helped my sleep.. I used to get adrenaline rushes during the night.. I also now are able to get up earlier due to it).

Anyway..ive found it a handy drug as it is treating other things then what I started taking it for http://en.wikipedia.org/wiki/Clonidine

Thanks for the info, I appreciate it. My BP does tend to fluctuate -- it dropped 25 points (systolic) about 15 minutes after the nurse first took it, so some of it is definitely adrenaline related. I noticed on wiki that side effects were 'dry mouth' and 'fatigue' -- so was wondering if you've experienced a worsening of your overall "fatigue"?