E pots

I was on fludrocortisone and then I went into the last appointment and my blood pressure was really high 150 over 110 I was on a player he wanted me to go off of the fludrocortisone then they put me a few weeks later on propranolol.  The drawing was so bad I was just laying in bed for weeks on my chest hurts so bad and my heart was irregular and Rapid laying down I couldn't get any relief sitting or laying down no 8 weeks in I am extremely anxious and jittery I just want to get up and move but it makes me worse I'm drinking like crazy all I do is drink and pee.  Before the square I was feeling good no I just wish I could sleep in and not have to drink constantly. Will it go back to normal or am I going to stay like this

On 5/13/2021 at 9:40 AM, MomtoGiuliana said:

I had a very similar experience.  I think bringing in a psychologist can be helpful.  They are the expert most qualified to come to a conclusion about mental health and it can help a physician consider other explanations.

Any tips?  I have an evaluation tomorrow.   I'm feeling awful.   In 8 wk flare here.  Scared

On 5/30/2021 at 7:36 PM, Platypus said:

Just as a matter of record, had the pfizer with basically no symptoms. First dose I had a 5 second adrenaline rush, that was it. Nothing with second. I did have changes in HRV and HR but it was mild and brief. Honestly, even a cold has more of an impact for me. And I had the flu in 5 countries before I gave into getting the shot. The final straw was the flu that caused a severe 5 year flare.

 

 

Did you come out of flare?  

How bad was it 

On 5/24/2021 at 7:19 AM, cmep37 said:

There is no way I could drink 6 litres a day!  I drink between 2.5 - 3 litres of fluid a day (about 50-75% of that electrolytes) and I am never done peeing.  I go to the loo about 18 times a day and am up 3 or 4 times during the night.  The fluid just doesn't seem to stick with me but no-one in the UK will prescribe me IV fluids.  The other reason I couldn't drink that much is that I would have no desire to eat and my appetite is poor enough already.  

Having trouble eating but drinking fluid helps with other symptoms.  Losing weight.  Sick...so tired  

Got them on both thumbs in bad long flare ...now deep on lft thumb in bad flare.  Also bloodwort showed high hematocrit 

On 8/2/2020 at 2:38 PM, Pistol said:

@WBuffett - I have been on Lexapro for years with good effects on my POTS, no side effects. Earlier this year we added Wellbutrin ( SNRI ) and I did very good with it until I had an allergic reaction and had to stop. Personally I never shied away from taking meds for POTS b/c of listed side effects. Had I been too afraid I would not be better today. Of course I had some bad experiences but none of them were serious. My specialist recommends SSRI's and SNRI's for all of his POTS patients. I have found them to help with energy and fighting fatigue. 

Did you find ssris or snris better?

Just now, E pots said:

I have heard SNRI's can make H pots worse.  Any other suggestion?  Thank you

Will look at effector.  

6 hours ago, cmep37 said:

Sounds like it probably was the Prozac!  I just know that in the past I've thought a POTS symptom was a side effect from a drug only to find it comes back in a flare long after I've stopped the drug.  Since you said the Prozac was helping you I wanted to make sure that wasn't the case in your situation!  Have you tried a SSRI/SNRI other than Prozac? - I think in the UK they recommend Effexor (venlafaxine) for POTS (personally I tried it and found no benefit) but I did a quick search and found no reports of hair loss with it.  It's an SNRI rather than an SSRI - SNRIs increase norepinephrine as well as serotonin so are often used to treat anxiety as norepinephrine is involved in the stress response.  Cymbalta is also an SNRI so might be worth thinking about.

I have heard SNRI's can make H pots worse.  Any other suggestion?  Thank you

On 5/24/2021 at 7:11 AM, cmep37 said:

Are you sure it was the Prozac?  I know that I experience a lot of hair loss just from POTS - I saw a trichologist and he believes that the lack of blood flow to my scalp when upright causes me to lose hair - I know that a couple of weeks after a flare my hair falls out in handfuls.   Luckily it grows back again and it is an all over sort of hair loss rather than in one particular spot so isn't too obvious.

On 8/2/2020 at 11:52 AM, WBuffett said:

Has anyone with PoTS ever taken SSRIs or SNRIs to help reset their autonomic nervous system/improve their PoTS symptoms? If yes, which one(s) did you take? Were there any side effects and what symptoms did it help fix?

My wife's doctor suggested Cymbalta, but there is not a lot of information out there on if it is of any benefit. She is hesitant to try it due to the horror stories of the side effects and withdrawal symptoms of taking SSRIs/SNRIs. 

Any feedback would be so appreciated as she is currently bedridden and is desperate for an improvement. Thanks!

Both times I stopped Prozac I had no problems 

On 5/24/2021 at 7:11 AM, cmep37 said:

Are you sure it was the Prozac?  I know that I experience a lot of hair loss just from POTS - I saw a trichologist and he believes that the lack of blood flow to my scalp when upright causes me to lose hair - I know that a couple of weeks after a flare my hair falls out in handfuls.   Luckily it grows back again and it is an all over sort of hair loss rather than in one particular spot so isn't too obvious.

So I took Prozac for a few months. Hair came out but growing back.  Started back on Prozac a yr later just to see if it helped snd shortly after noticed hair coming out again.  Stopped Prozac and it stopped.  The 2nd time trying it I was not in bad flare.   I am in a horrible worst ever 2 month long so far flare. No Prozac thus time.  We will see if hair comes out again.  I think it helped me (the prozac) not care as much about things that cause stress.  I would seriously notice not caring about things.  It says that few people get hair loss but I think doctors don't take the time to report it because my doctor didn't seem to care and its extra effort for them and its not life threatening....but I liked having hair 

On 5/25/2021 at 4:42 AM, yogini said:

There are many many times where I have had to take a day or two off of life to stay in bed.  If I simply can’t handle standing or sitting, I generally don’t.  I find my body knows when to push and when to rest.  I do think it is important to check your vitals when it is happening, though, so you can be aware of how to correct/adjust.

So do you lie down and walk?  I'm struggling to know what to do here.  I'm soooo uncomfortable sitting. Standing. Lying down.  All bad.  So I walk alot but that's uncomfortable too but it distracts me but I think make me progressively more agitated nauseaus and tachy but I feel cols uncomfortable squirmy and anxious sitting lying. Standing

On 5/24/2021 at 7:01 AM, cmep37 said:

Pistol's advice is great if you live in the US but if you are in the UK your chances of getting IV fluids are next to nil so I will chip in with what I do in your situation (and yes I have been where you are more times than I would like to remember!).  Sadly the only thing that I have found that works is a combination of rest and time!  I try to lie down (whether in bed or on a couch) and do a very small amount of exercise every 30 minutes - sometimes it's getting up and walking/crawling to the bathroom, sometimes reclined  leg raises or stomach crunches, sometimes just lying on my back bicycling my legs in the air.  I make sure I keep drinking - around 2.5 litres a day, at least half of this electrolytes, I eat small regular meals and I avoid any type of stress.  When I get that ultra-panicky feeling of too much adrenaline in the system I spend 10 minutes doing square breathing - breath in for 4 , hold for 4, breathe out for 4, hold for 4.  I find focusing on counting helps calm me down a little.  I will use sleeping tablets in a flare if necessary although never for more than 2 nights in a row.  I remind myself that I have never failed to come out of a flare (it is so easy to think that you will be stuck like this forever) and that I just need to give it time.  I have always found that fighting a flare and trying to push through only leads to it lasting longer and being worse than if I roll with it from the start.

Any good other sleeping tablets ..except benadryl.   I am afraid because its anticholinergic that it will basically do the opposite of mesinon (a Rx that is an  anticholinesterase given for POTS)   i took it a couple years ago and it worked but the next night was awful. 

On 4/27/2021 at 7:31 AM, ramakentesh said:

Yes the adrenalin surges. Hadnt had them for a decade until this recent flare when they went bezerk. Four nights of 8 hours solid. Not the best time ive had. 

Beta blockers didnt really help. Valarian out of desperation and taurine maybe helped a little.

On 7/10/2020 at 1:07 PM, haugr said:

An ACE2 deficiency can lead to low renin and is a known cause of hyper pots.  The deficient ACE2 ends up leading to a high amount of angiotensin II in the blood stream, which ultimately causes the kidneys to lower their renin production.

Can is resolve with decreased sodium intake?

I drink probably 6 liters but its constant drinking and peeing.  I feel horrible but less horrible.  I can see the BP go up n HR down w/ each drink but worried about electrolytes too.  

Been having twitches and spasms a lot

I drink constantly.  Its the only thing that helps. I add salt and mo salt(potassium) to h2o.  I'm probably drinking 6 L a day and ped and have diarhea too but after 20 min I need to drink to keep my HR in zone where I feel less shaky jittery off balance.  This morning my O2 sat was 87 to 94 until I drank 1.5 L in a short bit of time.  Then it went to 98 to 99.  

Any ssri's out there that won't cause hair loss?  Prozac / fluoxetine caused a lot of hair loss  but I think it did help

At the beginning two years ago I lost  20 pounds really quickly and then another 15 over a couple months at the point I was diagnosed I had already lost 25 lb. So at that point I've only fluctuated 10 pounds on 10 pounds off in between flares in a flare now just lost another 15. My mom thinks it's great and she tells me how good I look and she tells people and her friends but I've lost weight yay being well and telling her I feel like I'm dying I've overheard her on the phone telling people that I'm faking

On 2/10/2018 at 8:39 AM, p8d said:

I tried five betas, same results as you  before I was put on Nebivolol and absolutely love it.

Do you have H Pots?

Oh. Sorry. Started 10 mg propranolol am and pm.  

Started last night.  Not sure i everfell asleep.  I had a nightmare but felt like I was awake and was aware I was crying and was wanted to keep sleeping.  So tired an drawing but can't sleep.  

Helping the tingling jitters. Shakes. And BP..not helping fatigue 

Exactly. Good description 

Yes. Have noticed hemorrhoids hurt in flare.  Oww

Yes

I wonder why it causes such a quick drastic improvement then a crash

Before getting diagnosed I had taken a Medrol dose pack on the second day I felt almost normal my pulse was staying steady standing and sitting and moving.   Then the next day I was back to the huge increases impulse and feeling horrible it was dramatic Improvement on the second day. Does anybody have any experience