Autonomic dysfunction

[heapsreal]

I have been looking into OI as i get alot of brain fog/fatigue if standing or sitting for along time and find if i lie down for 10min i feel better, i have experimented with sudafed which has helped.The last few days i havent had any sudafed etc but have had hypertensive, tachycardic episodes, i didnt feel anxious and have had these feeling in the past whre i get the sweats and head has a pressure in it etc but they go after an hour(never worried about taking BP then) or so, but the last 2 days it hasnt stopped. One time my bp was 160/120 P-110, after this i started to become concerned as it didnt pass and kept going. My cfs doc is on holidays at the moment so couldnt see him, so saw our old family doc who my wife still sees and i havent seen for years. I stopped seeing him as he didnt have much to offer for cfs, so today when i saw him he dodged the whole autonomic dysfunction with cfs stuff in a nice way, probably because it was over his head and said it was anxiety related etc. I didnt mind this i was just after something to manage the symptoms, beta blocker would have been nice but think that was asking too much but did give me some valium, if its anxiety or autonomic dysfunction i suppose treatments can be similar. I can see how some people can have problems getting help from a doctor when they arent upto date on cfs matters.

Whats a concern for me is that now i have my viral stuff in check, it seems this autonomic crap is playing up. Im going to keep an eye on my BP as i havent checked it and seen it low, maybe its always borderline high when i feel strange in the past, maybe its poor cerebral circulation. I dont feel like its a panic attack, maybe it is, i just dont know. Im not sure what to do now, do i walk around with some valium in my pocket all the time?? I know my adrenal hormones are low, maybe its a sign there starting to wake up.

I felt abit lost without my cfs doc, i was thinking of going to the hospital but know its not great there either.

Appreciate any tips for this type of autonomic dysfunction.

cheers!!!

 

[taniaaust1]

Hi there heaps. wow your post could of been written by myself

I havent checked yet to see if you saw my blog post which I did the other day, (Ive been really struggling so havent been able to do much online either) but it sounds as if you have now developed the same kind of issue I have. And yes it is dangerous.. In the past Ive spoken to a couple of people who were young and have now got heart failure throu having that and doctors ignoring the issue... long term this issue can do a lot of harm.
(I personally think that is why I suddenly have two leaky heart valves recently show up on my tests which didnt show before... as my orthostatic hypertension I know Ive had for the past 4 years or so was all ignored, I should of been sent to a specialist for it).

My BP can shoot up high very suddenly (certainly not due to anxiety as its done that simply when Ive been standing up and asking my sister if she wanted a cold drink as I was making one for myself.. before that I'd been laying on lounge relaxed watching her TV.. no anxiety was there). Before it started doing this so suddenly and instantly on standing (I think its happening faster now due to some kind of further damage which has happened).. it used to do a creeping up thing over 1-2 hrs if I was on my feet and remain high or continous climbing till I rested.

I also went throu a period of 8mths (it may of been longer) where my BP was much higher then it normally is and constantly in the prehypertensive to hypertensive range when I was even just sitting... A doctor was thinking about treating me for high BP at the time due to that (but from being involved in a CFS study I knew it was going down very low at night and hypotension so didnt want this doctor to treat it due to him not really understanding what was going on at all).

I strongly suggest you to get a 24hr BP testing done (for myself it was taken every half an hr) if you arent sure what is going on with your BP at night while you are asleep as you could have hypotension then... and hence not what one can call essential hypertension but rather something else going on and hypertension of a uncommon form eg autonomic dysfunction.

The following may interest you http://hyper.ahajournals.org/content/28/1/42.full

Be aware too that a high BP which suddenly drops even if it drops to a normal BP reading.. may give hypotensive symptoms.

(the symptoms there you described (tachycardia which in my case was only happening in short bursts, I broke out in a sweat and also got head pressure) are exactly the symptoms I had the other day when my BP was over 160+/120 (actually found out from my specialists referal today mine was 170/120 .. at the time).

Even more scary is that I read today in the specialists referal that my heart rate was varying between 80 beats per minute to only 11 beats per minute).. so obviously something new is now happening to me and that happened instead of the normal POTS I usually get which can be followed later by the orthostatic hypertension I get.
I didnt even get a chance to get POTS the other day as the hypertension kicked in so fast so had me sitting right after the 1 minute point.

* As a child and in my early years of ME (uptil my 30s).. I had hypotension to the point where I would go down at times (not just othostatic hypotension). So this ME stuff really can change a lot just in one individual

I felt abit lost without my cfs doc, i was thinking of going to the hospital but know its not great there either.

My experience of this problem and hospitals is that they will just refer you to see your doctor about it.... They may also treat it wrongly if you do have orthostatic hypertension.. it is very rare and it is doubtful anyone at the hospital will understand the issue (very liable hypertension they are very likely to think its just anxiety).
You should try to seek out a specialist who specialises in it or in autonomic dysfunctions if you have orthostatic hypertension.

best wishes

ps I just saw your email and see you maybe didnt see my blog post on all this I did other day. Here it is at http://forums.phoenixrising.me/entry.php?1223-Amazing-luck-medical-miracle-breakthrou-for-me

 

[heapsreal]

Hi Tania,
I havent seen your blog, been looking for it just havent seen it doh!

These symptoms i have had the last few days i have had in the past but dont last long, maybe an hour or 2. This last episode is the longest they have lasted, so i will bring this up with my cfs doc when i see him in 2 weeks plus i have bought an automatic bp cuff for home, at work i take my bp every 3 months or so and its normally text book but obviously go's whacky here and there. Its like a tight rope of too much energy(tired but wired) versus not enough, no happy medium and throw into the equation not being able to sleep, you know how it is. The valium took my BP down to normal but pulse was still in the 90s which still too high really but head still felt like crap, couple of hours later i took another valium and some nuerontin which nailed the headache which was starting to become unbearable, now i just feel stoned, so better then how i was feeling. Thanks for the link, i will read it when i get a chance.

I wonder if treating adrenal fatigue is amplifying this adrenal bursts when i get them?? I think what i didnt realise and many others dont realise is that hypertensive issues are just as big a problem as hypotensive issues in cfs/me. For some reason many, myself included only think low blood pressure and postural low blood pressure as in standing in the same spot for too long or getting up too quickly etc. Hypertensive issues explains my tired but wired symptoms and insomnia.

In a similar note, sometimes in my line of work we treat quadriplegics for autonomic dysreflexier, this is where their nervous system fires off thinking that there body is in intense pain, this can be life threatening, we treat this with strong pain killers(even though they feel no pain, but reduces their nervous system response) and nitrates to lower their blood pressure. Im amazed at the similarities between them although dysreflexier seems more serious from my experience so far??

cheers!!

 

[Lynne B]

High blood pressure

Hi, heapsreal, hi, Tania,

I had high blood pressure and swelling in my lower legs for several years and although it really concerned me my GP did nothing. Finally, my CFS specialist sent me to a cardiologist who gave me a stress test. My heart is normal, so this is probably just another of our secondary conditions, disabling as it is. Anyway, I'm now on Karvezide, a diuretic, for the swelling, and half a Tenormin (a mild beta blocker) twice a day for the blood pressure. Wonderful. So I suggest you try getting a referral to a cardiologist.

By the way, heaps, when do you get your next blood test for the Bond Uni study? Did you say their final report will be out next year?

cheers, Lynne

 

[heapsreal]

Hi, heapsreal, hi, Tania,

I had high blood pressure and swelling in my lower legs for several years and although it really concerned me my GP did nothing. Finally, my CFS specialist sent me to a cardiologist who gave me a stress test. My heart is normal, so this is probably just another of our secondary conditions, disabling as it is. Anyway, I'm now on Karvezide, a diuretic, for the swelling, and half a Tenormin (a mild beta blocker) twice a day for the blood pressure. Wonderful. So I suggest you try getting a referral to a cardiologist.

By the way, heaps, when do you get your next blood test for the Bond Uni study? Did you say their final report will be out next year?

cheers, Lynne

Hi Lynne,
my final blood test is in mid december, only just recieved my mid year results which still show my nk activity as being very low.

Antivirals have definately helped me from around 40-50% to now as high as 90% but its very unstable as some days can be 70% and some days back to 40% if i havent had sleep, i think the viral side of it is under control with antivirals, although my nk function is low and probably leaves me open up to other imfection maybe.

I think there is something else underlying which is why im up and down, probably this autonomic dysfunction which regulates sleep which is never really good for me and of late the which seems to be getting more constant is these hypertensive burts or hypertensive POTS or maybe increased noradrenaline signalling, im not really sure just guessing at the moment until i see my doc, but it does cause brain fog , sweats, headaches and reduces concentration. Today i have been monitoring by bp and pulse and pulse isnt overly fast, no higher then 88 but blood pressure has varied between 108/- lying(also when i first woke up) and 143/- sitting, standing for 10min was 134/- . I have stopped dhea and tramadol yesterday as these can increase bp and pulse but will add them later and monitor there affect. But so far today although early, my bp and pulse havent gone as high as yesterday although i still have this headache that feels like its slowly going to increase, maybe my sleep meds help control the headaches when im asleep?? Im not really sure, maybe im just crashing too and headache/migraine was causing bp to go high. At the moment all i can do is keep an eye on it i suppose.

cheers!!!

 

[heapsreal]

Yesterday i monitored my bp regularly, mostly it was good, some variations from lying to sitting/standing of 20 points in systolic BP but all within normal range and felt alot better. Yesterday i did avoid caffeine, dhea and tramadol, anything stimulating as well, today i took my normal dose of dhea(20mg) and will see if this effects anything. I do think that my resting pulse is higher then it should be which is in the mid to high 80s, so that could be a sign of too higher levels of noradrenaline and probably the main reason for my persistant insomnia. In the past when i have had tired but wired crashes i now think they were hyperadrenergic POTS episodes, these were the times that sleep was almost impossible and i would pull out the big guns for sleep and use seroquel which knocks me over. Usually the day after this i feel good like the seroquel has hit the reset button, now what i think it has done is just stopped the big adrenal surge i was getting. I still want to talk a few things over with my doc as i think my noradrenaline levels are always slightly above normal and if i can control this then hopefully sleep will come naturally. This increased stimulation might also be why my adrenal hormones test low. Its a fine line though as sometimes i find just sitting on the computer hard or even standing for long periods like in OI, so i suppose my blood pressure from day to day is like a see saw, now i just have to balance the dam thing.

cheers!!!

 

[Emootje]

Hi heapsreal,

Did you ever had a glucose tolerance test?
I think a glucose tolerance test can serve as a DIY poor man's noradrenaline test, although it is not very specific.
High noradrenaline levels inhibits insulin secretion via the alpha-2 adrenergic receptor resulting in abnormal glucose tolerance.
An abnormal glucose tolerance could thus indicate high noradrenaline levels.
A normal noradrenaline test is preferable but if you do not have that options a glucose tolerance test is a good alternative.

My results:
Noradrenaline (nmol/l) = 4.44 (normal 1.24 - 1.84)
GTT (mmol/l) = 5.7 - 11.6 - 11.6 - 8.5 - 8.8 - 7,9

emootje

 

[heapsreal]

Hi heapsreal,

Did you ever had a glucose tolerance test?
I think a glucose tolerance test can serve as a DIY poor man's noradrenaline test, although it is not very specific.
High noradrenaline levels inhibits insulin secretion via the alpha-2 adrenergic receptor resulting in abnormal glucose tolerance.
An abnormal glucose tolerance could thus indicate high noradrenaline levels.
A normal noradrenaline test is preferable but if you do not have that options a glucose tolerance test is a good alternative.

My results:
Noradrenaline (nmol/l) = 4.44 (normal 1.24 - 1.84)
GTT (mmol/l) = 5.7 - 11.6 - 11.6 - 8.5 - 8.8 - 7,9

mootje

Many years ago i had i GTT which was normal but was pre cfs. I think i am insulin resistant and have a family history of type 2 diabetes and follow a low carb diet which helps.

Can you explain more how the GTT works for testing noradrenaline?

If i eat carbs i do sometimes have a reactive hypo response where i get cold sweats, shaky and tachy, feel hungry and my blood sugar has sometimes dropped. But i think an adrenergic response is common in people who are reactive hypoglycaemics??
I know you have to have a certain amount of carbs in your diet for 3 days prior to a GTT test as well.

I will look into noradrenaline testing here in australia, thanks for that info, i wasnt really sure they could test for it, interesting.

Can i ask what you/your doctor does for high noradrenaline levels

cheers!!

 

[Emootje]

Hi heapsreal,

Can you explain more how the GTT works for testing noradrenaline?

Most people with pheochromocytoma, a neuroendocrine tumor that secretes excessive amounts of noradrenaline and adrenaline, have impaired glucose tolerance. The article below explains the mechanism behind catecholamines induced changes in glucose metabolism. It explains how (nor)adrenaline influence the glucose tolerance test.
http://jcem.endojournals.org/content/88/8/3632.full.pdf

If i eat carbs i do sometimes have a reactive hypo response where i get cold sweats, shaky and tachy, feel hungry and my blood sugar has sometimes dropped. But i think an adrenergic response is common in people who are reactive hypoglycaemics??

I agree, hypoglycemia gives adrenergic (nor)adrenaline symptoms like shakiness, anxiety, nervousness, palpitations, tachycardia, pallor, coldness, clamminess, dilated pupils

I will look into noradrenaline testing here in australia, thanks for that info, i wasnt really sure they could test for it, interesting.

Noradrenaline is part of the catecholamines test, maybe you can also look for that.

Can i ask what you/your doctor does for high noradrenaline levels

The only thing that helped me was slow deep breathing.
My doctor did absolutely nothing.

For more information on the science behind deep breathing

http://thevirafoundation.org/images/Trauma_Treatment_Breathwork_Part_I.pdf
Authors interviews:
http://www.haveahealthymind.com/radio_interviews.html

 

[heapsreal]

thanks for that emootje, i have saved those links and will have a read.

cheers!!

 

[heapsreal]

Yesterday i took my dhea as normal with no problems with BP although pulse was a little higher then i would like being in the 80's so some type of stimulation going on i think. Today when i woke up, bp and pulse all good, took dhea and a small amount of pregnenolone cream maybe 5mg if that. Its now 3 hours later and my bp is still within a normal range but pulse is now over 100 and im sitting here doing bugger all, im getting a light sweat. So i think these hormones are having a negative effect on me, although they do help some with energy because when im not on them i feel sluggish. I will say also that when im not on these hormones i also have these episodes but not as frequently or as strong, so i think they are intensifying these reactions. Its very strange as these doses are extremely low, 1/10 of what would normally be used, well thats our whacky nervous system in cfs.

I still need to look at improving my adrenal hormones. There are some calm herbs for adrenal health like withania which i use and Relora which i have used in the past which i will have to look into again.

Chasing my tail again.

cheers!!!

 

[taniaaust1]

Noradrenaline is part of the catecholamines test, maybe you can also look for that.

Hi heaps. You should easily be able to get catecholamine testing done which does check noradrenaline in Australia. I had that done in the past at an ordinary blood lab. (that's how I know I get some higher then normal readings with that).