Dysautonomia??

Just wondering if anyone else has been diagnosed with various forms of dysautonomia? I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). I see a lot of other members have concerns about this as well. Does it go away? Is it just a symptom of withdrawal? My doctors seem to think it's not. Anyone have their dysautonomia go away after healing? Thanks!!!

Coaster guy, i was diagnosed with pots also, an the Xanax i was prescribed made it way worse as most of my energy was depleted so i layed around alot!witch is no good for pots incase you didn't know,

 

i know how hard pots can be it makes your life living hell, always having no energy, exercie intollerance, the slightest bit of input making your heart race uncontrollably, losing your desire to do anything.

 

believe me! ive been there!

 

i know exercise and physical activity may be really hard but try to do as little as you can each day, walk as much as you can even if its a short small distance, do housework, anything to keep yourself sedentary, (as this makes pots way worse)

 

anothr good bit of advice is take vitamin b12, and b complex, with potassium daily. it will increase your blood volume and cut back onhe tachy. plus give you energy, vitamin C also helps.

 

eat salt, alot of salt, it will help raise your BP if its low.

 

and the biggest thing is, drink lots of water. as much as you can a day. ive been battleling POTS for a whole year now and after alot of research ive learned alot of techniques to battle it. i still working on getting over mine.

 

one last tip, ask ur doc about a medication called "Florinef' it helps to raise blood volume and decrease POTS symptoms alot.

 

hope this helps, take my advice and keep me posted!

welcome to the pots club guys,

there are several posts on this topic - one of them quite recent.

do you think we may benefit from starting a thread for all folks on bb who deal with some sort of dysautonomia? To my knowledge there are quite a few of us.

christian, I agree that some people might benefit from the suggestions you've offered, but there is always a but Some people do not tolerate well supplements and too much potassium can sometimes degenerate into a condition called hyperkalemia - to the best of my knowledge that is life threatening! Also, there are mixed feelings even in the medical world about the salt intake - I posted some linkr recently - there are studies that show that salt doesn't increase blood pressure by increasing blood volume, but by increasing the production of adrenaline (this acts as a vasoconstrictor, thus the increased BP)

http://www.foodnavigator-usa.com/Science/Salt-increases-blood-pressure-by-adrenalin-not-volume-expansion

Also, there have been some recent studies to suggest that a high salt diet may be relatedwith the development of autoimmune diseases

http://health.usnews.com/health-news/news/articles/2013/03/06/salty-diet-might-help-trigger-ms-rheumatoid-arthritis

my point is - while these things may work for some, it's always advisable to consult a dr before starting anything that may affect your health as sometimes the consequences might not be worth.

I've posted a lot on non-pharmaceutical ways of dealing with dysautonomias

as well as on things to be avoided, - see link below, but as always - please take these with a grain of salt and by all means consult a dr - a POTS  specialist would be awesome!

http://www.benzobuddies.org/forum/index.php?topic=76827.0

Best wishes

Amy

 

 

 

I agree there should be a dysautonomia thread. I was hoping this might turn into it  . I want to hear about all sorts of dysautonomia.  I have POTS, but am very curious about all kinds; specifically the kinds that have sprouted up since taking Benzos.

sounds good to me

I,ve been diagnosed with low flow POTS a week after I weaned myself off Ativan and put on Klonopin as my dr said it wiol help with my POTS symptoms, boy was he wrong ...lovely experience overall!

let's hope others will contribute as well.

Amy

@[cm...]

@coasterguy,of course do talk to your doctor about some of this advice im giving you because ,im no physician.

but also keep in mind they won't have much more advice then what im giving you, if not less.

doctors don't know much about pots even through there are many sufferers. possibly because its become relatively  more prominent in the past decade. & is often mistaken for many other conditions.

 

it can be very frustrating trying to explain pots to a doctor because, its like trying to explain color to a blind man.

 

anyway best of luck, hope you can find a good treatment plan.

Coasterguy,

 

Why don't you start a thread entitled "Dysautonomia / POTs / Blood Pressure Issues Support Thread."  That will definetly garner a lot more traffic and a lot more info, and I will chime in there with everything I know. 

 

But for now, I have hypotension (not POTs) that has largely manifested itself AFTER I have tried to taper SSRIs and Benzos -- so everything tells me that my CNS is sensitive and that my "dysautonomia" is benzo / SSRI w/d induced.  My dysautonomia is also hormone sensitive, b/c it gets worse around my cycle when progesterone is low.  As we know, progesterone is just like GABA....so there you go with the connection between GABA / Glutamate and dysautonomic disorders.

 

Ihope is one who had bad POTs due to w/d and it completely healed. She didn't have it before.  She's an expert in it.  There are also a bunch of people who experience tachycardia (but don't necessarily get a POTs diagnosis) during w/d.  My PCP said it is very common.

 

There are helpful websites for POTs and dysautonomia, but be aware that most of the folks on there have it organically because of something, not tied to benzos. 

I would love tp hear more about this since I am struggling with this as well, but never had it before klonopin withdrawal.

Christian,

your suggestions are spot on for a certain flavor of POTS and even there there is controversy.

Right after I was diagnosed I was advised to try florinef, water and salt loading, supplementing potassium -  the usual - by a well known US POTS specialist, who later on realized that this approach is not beneficial for me, on the contrary. So I was simply trying to say that in POTS, just like in any other disease/disorder there is no one size fits all kind of treatment, and what may be beneficial for one patient might be making someone else's situation worse. You have to realize that some people with POTS, particularly if it's a benzo-induced issue, have labile blood pressure and for them the extra salt/water may be detrimental.

I didn't know low potassium can be a cause for POTS - you made me curious, but I know supplementing without a dr's approval can be a bad thing. Do you happen to have any resources (published articles etc) in this direction?

Hoosierfans,

why don't we keep this thread "alive" - just an opinion- and all of us with any experience on this can chime in every now and then.

Maybe we can just change the title of the thread - is there a way to do that?

Thanks,

Amy 

Bump

Here is an interesting article on temazepam and orthostatic changes in HR and BP.

Finding this took me a couple of months of intense searching, but I finally have some validation.

The article is a bit 'old' - it's from 1987, but I guess there are, or there were drs willing to look into benzo induced dysautonomia.

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1386406/pdf/brjclinpharm00105-0112.pdf

 

I'd be really interested in hearing what others have to say about this.

 

Happy reading,

 

Amy

Wow, Amy.  that's awesome.  haven't read the whole thing yet but I will.  From my own personal experience, my hypotension got so much worse when I was on the Ativan, which is why I insisted on getting off of it.  Of course, then I was left with all the jitters, dizziness, fatigue, and feeling like crap.

 

Interestingly, I've always just watched my bp and never paid attention to my HR.  I'm now watching it and I notice that resting it hangs out in the 85-95 range.....not super bad, probably not considered tachycardia itself, but definetly on the high side.  And when it is there or higher my bp is definetly lower (when my pressure is up above 105, I get down into the 70s for HR....much healthier).  So maybe I am borderline "POTs." 

Please be careful with Florinef.  It's a steroid which interacts with Gaba receptors. 

Please be careful with Florinef.  It's a steroid which interacts with Gaba receptors. 

I was on both florinef and klonopin for 1 year and have weaned myself off both of them. Do you happen to have any source of info about florinef and its interactions with the GABA receptors?

Thank you,

 

Amy

Hi Amy,

I wish i could be the source but that won't work.  LOL.  I'm just speaking of my inhumane symptoms of a steroid interacting with me and many others. 

 

However, in medical terms, in the section chewing the fat under Perservance's post about the HPA axis it's explains it there, however everyone is different. 

 

Did you have a tough time with Florinef?  Congrats on weaning off both.

Hey Amy,

 

Florinef is not a "steroid" steriod, like prednisone or cortisone.  It is a mineralcarticoid, so it has more mineral properties than steroid like properties.  I was on it prior to the whole Ativan business, and I need to stick on it for awhile (I tried to taper last spring at the same time as the Klonopin and that was a big NO GO for my bp).  I sent my integrative doc Perserverance's discussion of the HPA axis and asked him specifically about the Florinef and he said that yes, Florinef acts on the same axis (it is aldosterone, which is produced by the adrenals), but that it has more mineral acting properties vs steriod properties.  So he agreed that it SHOULD NOT be tapered at the same time as a benzo b/c it does act on the same axis, but not because it is a "steroid."  He advised that the best course was to give my body a significant period of time between the two tapers (6 months to a year, at least), just to give my CNS time to regulate and stabilize.

 

Hope this helps,

 

HF

I had a bunch of issues with florinef

- weight gain (15 lbs in a couple of weeks)

- occasional spikes in blood pressure - nasty and scary

- 24/7 headaches

- swollen ankles and hands mainly in the AM

- my periods were more frequent, heavier and more painful than usual (sorry if tmi)

so I decided to come off it against medical advice. The dr who prescribed the florinef didn't want to acknolegde the side effects and I just wanted to prove him wrong  . Shortly after I stopped the florinef I stopped having the problems I listed above, minus the weight gain...

I was honestly scared that after stopping the florinef (I took 0.2 mg a day for at least 9 mo) my adrenals might not start working properly again, but I think I'm in the clear now.

I kept trying to read Perseverance's post on the HPA axis, but I'm a few neurons short now (courtesy of klonopin) to make too much sense out of it. It's on my 'to read' list though.

 

Hoosierfan,

I know about florinef being used for its mineralocorticoid properties but it does have glucocorticosteroid properties as well - it,s actually a much stronger glucocorticoid than prednisone- 3-5 times stronger. Given though the small doses recommended for POTS and even for adrenal issues, its gluco effects are almost insignificant.

I tapered klonopjn and florinef almost at the same time - the spikes in BP I was having were really scary and I was sick and tired of poisoning myself....oh well...too late for regrets.

 

Do any of you ladies know anything about the pituitary gland involvement in this? I have an elevated prolactin level and that's secreted by the pituitary gland. I just had a brain MRI looking for a pituitary tumor as this is the main reason (after pregnancy and breastfeeding) of an elevated prolactin level. I'd hate starting to take some meds to bring that level down only to find out, later on, that it is yet another benzo w/d perk.

 

Amy

Hi Amy,

Oh MY. 

 

That would be in that blog. I understand why you can't take that all in right now. 

 

What about the results of the MRI?

 

I had a VERY elevated IGF-1.  That has to do with growth hormone and the pituitary gland. I thought i had a horrible disease called acromegaly.  That would constitute that.  No doctor (endo) could explain this.  IT was high for a long time.  I finally had my GH hormones checked and they came out normal.  I had to beg for that test.  I waited almost two years and had it checked again IGF-1 and it was back in the normal range.  Nobody knew whyi t went up or came back down. 

 

I took Florinef for two days and it hit me just like HC.  It will hit the same receptors.  But some people don't have problems.  I see you did.  So sorry for your suffering.  i have had 3 mri's of the Pituitary gland myself.

 

AT the time of my high IGF-1 I never even considerd it being caused by the benzo.  I'm thinking like you that it is one of the "perks"of this nasty nasty drug.  I soooo hope this is the case for you. 

thanks cappi,

I will have to make an effort and read the thread  before my next dr appointment.

I just had the MRI on Thu and will see the dr next Wed. Keep your fingers crossed for me.

I had my growth hormone checked, my thyroid hormones, the FSH and LH along with the prolactin - all these hormones are secreted by the same lobe of the pituitary gland, yet only the prolactin is out of range... I hope i'll learn more from my neurologist on Wed. Maybe I should print perseverance's post on the HPA axis and hand it to my dr ...he seems to be quite the open minded type.

Strange thing about your IGF-1, but acromegaly comes with VERY specific symptoms (same thing actually with high prolactin levels - I have the positive blood work and no associated symptoms) and those can't be mistaken at least not by doctors (or so i think?!), I bet it was scary for you. Glad to hear it was nothing. I hope it's just a fluke for me as well.

 

Amy

im scared to try florinef now knowing it act on the adrenals! i have an asthma inhaler with is a beta 2 antagonist and it acts of producing the same chemicals in your body adrenaline does. and taking that s a NIGHTMARE for me! horrible tachy that lasts hours. i have reallly low bp afer exercise so the doc said florinef would help raise my bp and keep it sustained at normal levels after and before exercise.

however, im afraid or tachycardia as possibly a result and its dangerous to exercise with a fast resting heart rate such as mine, one doc suggested i not exercise at all with such a fast resting heart rate.

 

has anyone ever had tachy from florinef?? or tryed to exercise with it?

sounds like nasty stuff, adrenal based meds have always been a disaster with me

florinef is the synthetic version of the aldosterone your adrenal glands produce naturally.

If you read my posts on this thread you'll see what kind of side effects I've experienced. Most people, though, tolerate it quite well.

I've exercised while on florinef and I don't think the florinef made me worse, neither did it cause my tachycardia to worsen.

dr's opinions seem to be quite contradictory in respect to exercising and its benefits for a POTS patient, so I'd probably listen to what your dr had to say.

You might want to look into licorice - has similar effects to the florinef, but it's a natural product

see this doc for a very comprehensive report on licorice - hope the link works, I had some trouble posting it.

 

http://www.ema.europa.eu/docs/en_GB/document_library/Herbal_-_HMPC_assessment_report/2012/08/WC500131285.pdf

 

Amy

thanks for posting a link

Autonomic nerve dysfunction can affect many other functions in our bodies. pots is one but you GI can also be affected.

b u m p

Does dysautonomia repair itself? I sure hope so. I don't want these gi issues forever. How is it possible that we can loose bowel urge with this disease? I don't understand. Can benzos be to blame? How can I lose the urge to move bowels? Its not right