Moods...emotions and low INR - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Moods...emotions and low INR

pumpkincake profile image
12 Replies

I take an antidepressant and have for years. Beyond the "emotional rollercoaster" that we go on when being hit sideways with different symptoms and problems....I see a direct correlation to some emotional lows when my INR is way too low. I dont believe it has to do with my physical symptoms...like frustration from not feeling well or pain. I feel it is actually an altered state of emotion...be is neurological or what have you.

I wonder if the lack of blood flow (due to sticky blood) when the INR is low can add to emotional lows if you are predisposed to depression as I am?

I noticed it was written that an infrequent sign of APS is mental health difficulties such as depression and psycosis. Just curious how many people with APS deal with emotional ups and downs.

Some days trying to stay positive is difficult enough, esp when you have to fight with this disease...fight for you...fight with doctors (not literally) and fight a system that doesnt fully recognize Hughes/APS.

So on a more positive note....

“A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort.” Hahaha...just kidding really!

Have an awesome weekend everyone!

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pumpkincake
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12 Replies
taffydaffy profile image
taffydaffy

At times I hate the words posative attitude as I have now lived with Hughes for 28 years this month with a very possitive attitude last week I was on the edge of total madness OMG this has been the worst I have ever been I thought I had lost it big time shaking retching crying in so much dam pain couldn't and would not talk took so many pain meds changed my Butrans 20 mg patch 1 day early I was in meltdown I was put to bed and I slept for 15 hours solid when I woke I just layed there for a while thinking to myself Oh God am I any better felt ok nurse did my INR it was 2.4 It should have been 3.5-4 I took 9 mg of warfarin x 2 days and I am now back to normalish lol I have Mild Cognitive Impairment and this does not help with all the other illnesses I have what a start to April and I have to say this site has saved me so many times I read every message and even after all my years of bad Health I am still learning new things God Bless you all x

jessielou profile image
jessielou in reply totaffydaffy

Hi hon

Sorry to hear you had awful time recently, just wanted send some ((((hugs))))

Take care gentle hugs love Sheena xxxxxx :-) :-) :-)

jessielou profile image
jessielou

Hi hon

Many autoimmune conditions do have depression as a symptom, whether its down to feeling crap all the time, hormones or an actual clinical symptom is difficult to tell.

I know i feel very low when inr is low, also although I've had a hysterectomy I feel really down monthly so hormones make it worse.

Before being diagnosed was often told I had depression, mmmm is it any wonder!!

Still keep smiling and saying I feel fine, as you say a positive attitude may annoy a few people, bring it on!!

Not sure if this saying is right, brain fog, but i like it, so here goes!! A friend sees the smile and thinks you're ok, a true friend sees the smile but sees the pain in your eyes and knows the truth!!! Thank goodness for my true friends!!!

Hoping for better days for us all.

Take care gentle hugs love Sheena xxxxxx :-) :-) :-)

tassie profile image
tassie

A great saying jessielou ...was just trying to think if I had any friends that could see through the smile and the only one who springs to mind is my osteopath ...she is a lovely young girl and she can always tell when I'm in pain or feeling crap yet no one else sees it.

I too tend to get depressed when my INR is low and I also used to get majorly depressed on a monthly cycle when I had them.

emmaj profile image
emmaj

Unfortunately I think depression is an umbrella term used when doctors are baffled and cant find out whats wrong with us, therefore a lot of us are almost made to question our sanity and believe we are depressed and the symptoms are all in our mind-which in turn makes it even harder! We are all very entitled to feel very low at times and i think this site is great as only we know how bad things can get and guarantee if one person is having a bad day theres enough of us who may be having good days to give a little gentle kick up the bum to get us feeling a bit more positive again! I was also give anti depressants after months of eye pain and being told there was nothing that could be seen and i was imagining it - until i fell through the front door with two kids in tow and couldnt get up!! id lost faith in the system after a stroke was undiagnosed for two years, and when i was finally diagnosed rather than feeling distraught that i was ill i was actually walking on cloud 9 as i was finally being listened to! I personally think lack of blood flow to the brain has more associations with a lot of our symptoms/day to day struggles than we realise. I find by the end of some days ive had enough - bumping into things becasue of lost sight, forgetting and being so unorganised makes everything and every little job so much harder - so does depression come first - or is it because we have to struggle to get through each day more than the average person?? All I know is despite a lot of the stigma/prejudice with these auto immune disorders whee people think your hypochondriac and down all the time - if just for one day those people could feel what we go though then they would actually see how strong we are in adversity!

Jade profile image
Jade

Yes yes yes. I totally agree though I had thought I was imaginaing it. I definately feel really low, and in pain etc when my INR falls below 3. I have the massive headache , mentally it feels like the end of the world. I am unable to concentrate and work think etc And generally miseable. It often lasts all day, I take extra warfarin, often pain meds and if I am desparate use fragmin too, which usually works after a few hours.

The annoing thing is not knowing what knocks it down, because if I did I would try prevent it. Right now at age 50 I believe my hormones are messing with it.

fchristal profile image
fchristal

I have been diagnosed with "Major Depressive Disorder" and also think that it is related to my APS. And, sometimes I think it's made worse when doctors have such a hard time putting 2 and 2 together! I was recently hospitalized when my INR spiked to 9,3 and when I got home had a major meltdown. I'm 57 and have been dealing with this for years. I'm starting to wonder if the anti-depressant medication is to help us ot just to make everyone around us happier. I've been "smiling" for 57 years and have found that if you stop, even your "loved" ones will go running! So, keep smiling while you still have the strength!

GinaD profile image
GinaD

emmag

Couldn't agree more! It is much easier for a doc to call you depressive or hysterical then actually explain a bag full of bizarre symptoms. Here is were the show House MD is truly fictional: most patients exhibiting the kinds of medical puzzles House's Team investigates would be dismissed as "depressive," or "hysterical," or "paranoid," in our imperfect Real World. Now it is true that on the show many patients do lie -- but their real exhibited symptoms are rarely dismissed. How I wish Princeton Plainsboro Hospital really existed! I'd consider moving next door! (But then, in our Real World "they" would call me hysterical for doing that.)

bernieembleton profile image
bernieembleton

It is hard when you have the down days. I mentioned it to my practice nurse who was surprised i was tearful and feeling ill, and fatigued. Her answer go home and make a nice cup of tea. :-) as she has never seen me feeling down. She meant well,but hey ho. Thank goodness for this site. Depression is a symptom of APS, and medics should be more aware with us patients.

daisyd profile image
daisyd

Love the saying, I will TRY and remember it !

I am 100?% positive that having a low INR makes a difference to how depressed I feel, before going on clexane I cried nearly everyday even when out shopping at work everywhere the fog lifted after having clexane and I felt happier

I am now on Warfarin it doesn't have quite the same effect so thank goodness I am now on antidepressents. but I can feel when my INR is low.

I don't know how I would cope without them

Karen xx

paddyandlin profile image
paddyandlin

This is a big issue for a lot of people. Because we struggle through and put what I call a mask up it is a very big shock to those when youdo get unhappy, grumpy or tearful , I do think it comes down to how you feel.

It is difficult to always be happy

Paddy

sweett profile image
sweett

i have APS and have been put on warfrin, i was told i had APS after history of blood clots and miscarriages and migrains,, i was given my inr reading and told to keep it between 2-3 and keep coming back for thumb pricks. now i am left with this illness not having a clue what it is, and what i know about it is what i have read myself,, it felt like they told me whats wrong with me and then sent me on my little way,,,, iv sufferd with hi and low moods and thought i was going mad with it i actual thought i was on the change being 39 yrs old becouse my moods were up and down that much,, im so glad im not on my own and other people are feeling the same,,,, seems like docs dont really know much about is so we have bin dumped with ifs and buts and dont knows,,, i feel we are gunna have to learn from each other on this site,, so thanks guys iv just joined and feel better already...........

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