I go from 0 to 100 so easily. Temperature starts changing, start feeling unwell, panic, heart races, poor sleep.

I think I'm emotionally burnt out. It's like my emotional body is so badly bruised, worn out, exhausted, there are no defenses whatsoever.

And the only way to resolve it is to have a solid break from emotional stress. And for me that means a complete break from my family.

I’ve had dysautonomia, orthostatic intolerance and me/cfs for as long as I can remember but the last few years have been really rough.

I am so desperate to be able to stand up without feeling dizzy, like I can’t catch my breathe, breaking into a sweat, or graying out. I wonder if it will ever happen.

Has anyone found a successful treatment? Did anyone get better?

Hi all,

I posted here a few months ago when I was about to start fludrocortisone 50mcg daily for dysautonomia/orthostatic intolerance/low blood pressure type symptoms.

I’ve now been on 50mcg for around 3 months. I tolerated it reasonably well overall.

Early on, I did notice that I seemed to retain more fluid and was urinating less frequently than usual, which felt encouraging. After around 6-8 weeks though, my usual tendency towards frequent urination started to return, so I wasn’t sure how much ongoing benefit I was still getting from the 50mcg dose.

I’ve just had follow-up bloods:

• Sodium: 139 → 143 mmol/L
• Potassium: 4.0 → 3.6 mmol/L
• Creatinine: 103 → 96 µmol/L
• eGFR: 80 → 87

My specialist is happy for me to increase to 100mcg daily, monitor my BP, and repeat U&Es in 2 months.

I’m especially interested in people who started at 50mcg and then increased to 100mcg:

• Did 100mcg feel noticeably more effective than 50mcg?
• Did it help more with low BP, standing tolerance, weakness, dizziness, stamina or fluid retention?
• How long after increasing did you notice a difference?
• Did side effects become more noticeable at 100mcg?
• Did potassium become an issue for you?
• Did anyone find that 50mcg seemed to help initially, then felt less noticeable after a while, but 100mcg restored some of that benefit?

I know everyone responds differently and I’m following my specialist’s monitoring plan. I’m just interested in people’s real-world experiences with that specific dose increase.

Thanks all!

Hi everyone,

I’m looking for experiences for my husband, who has very severe ME/CFS. He is currently bedbound 24/7 and extremely sensitive to medications and stimulation.

His main symptoms

He seems to have significant hypersensitivity of his central and autonomic nervous systems.

- He can barely tolerate sitting upright or being out of bed.

- Even very mild stress can cause a major worsening of his symptoms.

- His heart rate can increase during these episodes, although it does not necessarily reach very high levels.

- He has severe dizziness when trying to sit upright.

- He experiences tingling and numbness in his head, as well as very unusual neurological sensations.

- He has significant neurological pain.

- He has severe cognitive and sensory hypersensitivity.

- He can barely look at a phone or screen and speaks very little.

- During episodes of dysautonomia/POTS, he also urinates very frequently.

- As a result, he is essentially bedbound all the time.

His blood pressure is generally good, and we have not noticed significant blood pooling in his legs. The main issue seems to be an extremely reactive central and autonomic nervous system.

He currently takes midodrine 2.5 mg three times a day, but it has not significantly improved his ability to tolerate being upright.

He also has persistent symptoms following a reaction to fluoroquinolones (“floxed”), including neurological symptoms and pain. We consider this separate from his ME/CFS; we do not believe the fluoroquinolones caused or worsened his ME/CFS.

Treatments he has already tried

LDA (low-dose aripiprazole)

0.10 mg, then 0.25 mg over approximately 2 weeks. We feel this may have been increased too quickly given his extreme sensitivity. We are wondering whether it could potentially be retried much more slowly under medical supervision.

LDN (low-dose naltrexone)

0.10 mL for about one week, but he tolerated it very poorly and stopped.

Midodrine

2.5 mg three times daily, with no significant improvement in his ability to tolerate being upright.

We are particularly interested in experiences with

- Guanfacine

- Mestinon / pyridostigmine

- Lamotrigine

- Rapamycin

- LDA, restarted much more slowly

- or any other treatment that has helped people in a similar situation.

For those with very severe ME/CFS, bedbound 24/7 and extremely medication-sensitive:

What has actually helped you?

- What reduced your neurological pain or symptoms?

- Did anything reduce your extreme reactivity to stress or stimulation?

- Did anything improve your ability to tolerate sitting or standing?

- Did you regain even a small amount of energy or function without causing significant PEM?

- Which treatments were particularly well or poorly tolerated?

We are mainly looking for experiences from people in a genuinely similar situation, so that we can discuss possible options with his doctors.

Thank you to anyone willing to share their experience.

I am fed up. I am a 36 year old woman. I’ve had syncope for 22 years. More recently about 4/5 years I’ve had OH/venous pooling. I was diagnosed 5 months ago.
It was extremely emotional for me to have this diagnosis because the syncope was so bad from 14 years of age I would be sent home for collapsing in School.
The OH/Venous pooling affects me daily. It causes me visual distortions, black dots, I constantly urge to sit/lay down. When I stand I need to urinate, issued with bowels, venous pooling, swelling in feet hands cheeks… the pain its nerve pain heaviness. Along with the dizziness palpitations etc etc
I was medically gaslit for years. When I was a teen I was told I had “painful periods” then I was told I had anxiety/panic attacks etc I drank too much alcohol, I was afraid of needles. I have woken up in the bath with water in my mouth. I’ve been in hospital 50 plus times.
The breaking point for me was when I had a wisdom tooth removal awake. The dentist gave me lidocaine and I had syncope then my legs were also involuntarily jolting. I begged the dentist not to give me anymore lidocaine and had the remainder of my wisdom tooth awake. The dentist laughed it off I had anxiety and I assumed I was allergic to lidocaine.
I then had a LLETZ colposcopy procedure, with lidocaine. After the procedure I went to rebook my appointment and I remember falling at the desk I woke up in a hospital bed. The nurse kept me for a few hours and noted my BP was off the reading (low).
I questioned the gynae after the appointment thinking something was wrong, and even went to my GP who wrote to a cardiologist the reply was “they didn’t know”. I searched the internet for answers and POTS came up with information to avoid lidocaine. I have been absolutely fine without adrenaline in injections.
Since my diagnosis I have been fighting with the team I am under to help with the OH/venous pooling. I’ve gone to PALS twice. All I am met with is to attend a “management course” for syncope. I have told them that I know enough about syncope, I’ve had it for 22 years and I could write them a book about it. If you keep fainting, collapsing, you will notice a pattern (alcohol, constipation, heat, lidocaine) and you will avoid it.
That’s not what I need help with. They do not want to give me medication. They are downplaying my TTT saying despite diagnosis of syncope and OH I did not provoke a faint. They are trying to put down the word initial before OH aswell. I have this well documented on my medical files. I have been through endocrinology, rheumatology, neurology, it’s well documented of me complaining for 5 years of seeing black dots fatigue, purple feet.. I’ve been misdiagnosed with fibromyalgia, Raynaulds, panic attacks, so many times. I’ve had a random doctor say they’ve suspected MS, diabetes, the works, I’ve even asked the same NHS trust for private fees on further tests and id need the consultant to authorise this.
I am now considering to go to cardiology and vascular because I am fed up with neurology. I do not want to know about a holistic approach. I’ve asked about waist level compression and midodrine and they dont answer me.
All of this affects my quality of life drastically and my mobility I am considering going to Germany or America or to see Dr Gall or professor Lobo privately. I don’t know. Any advice let me know I could just break down and cry. I have children. Taking them to school is too much.
Thank you

I officially got diagnosed about a month ago after almost being diagnosed 10 years ago. The doctor that I'm currently going to has decided to diagnose me with autonomic dysreflexia and acts like that is the exact same thing as autonomic dysautonomia and referred me to the Cleveland clinic. Mind you the Cleveland clinic itself says those are not the same things and dysreflexia is life threatening. When I brought this to their attention I got brushed off. How am I supposed to trust this person if they can't even get the basic facts about something they're diagnosing me with correct.

And like I'm sorry I have never had any of the symptoms of autonomic dysreflexia in my life. My blood pressure has never been high and in fact I passed out on the tilt table because it dropped. But no that's definitely what I have. I am currently in tears because just what the fuck.

Im curious if anyone deals with vasovagal episodes waking up to symtpoms that are stomach related?

My body is very sensitive to stomach issues. I have a hiatal hernia I dont know if that is why, but nausea will make extremely weak. Today I woke up, I had been awake for probably 3 minutes grabbed my phone and started scrolling, moved and my cat laid beside me and I just go this nausea, almost immediately my head felt woozy. I stood up to go to tell my mom and everything felt so heavy, like gravity had been turned up, head felt very woozy, movements felt a bit off...After about 30 seconds the feeling like I was gonna pass out feeling started easing. Though I still feel tired and wiped out and sore.

This is similar to an episode I had last year where I woke up to nausea, it scared me I guess Immediately jumped out of bed thinking I needed to throw up and everything went woozy, numb, my head got insanely heavy etc.

The one today really scared me because even though nausea or stomach pain was the first symptom I had I dont know that I've had that reaction laying down.

​

Hi there. I wonder if anyone can relate to me, I've been having multiple health problems cus of my "trauma" and I went to multiple neurologists cus the symptoms feel so real (they are) 😭 Now that all the test results came normal, LIKE SERIOUSLY EVERY SINGLE TEST OUT THERE, doctors are making me feel like I'm crazy or something. My whole family thinks I'm crazy. The symptoms include fainting(disabling but not unconscious) dizziness and abnormal loss of sensation of my right arm. I'm trying to manifest and stay positive CUS THAT'S LITERALLY ALL I CAN DO rn. I'm also going to get therapy. I am positive that i will heal soon ❤️ What i want to share with you guys/girls is that I've developed abnormal need of sympathy....

Yesterday my cousin (Pearl) called me and we didn't talk about the issue at first, then she asked me in sweet feeble voice "Are you alright?" And I started breaking down immediately. I am eternally grateful that she cares. Something inside me just feels touched. She also texted me later "Take care" which is also pretty basic right but yeah I broke down at that too lol. Is there something wrong with me? I keep crying at every small ass thing it's kinda worsening my problem 😭😭😭

I’ve been having severe symptoms but my heart rates in the 80-90s range. I’m so dizzy I can’t do anything but lay down. My husband tries to get me out of the house once a week I was very careful but came home feeling bad felt bad today.

Mornings are usually okay but this morning I passed out and had to lay down. Couldn’t sit up after a light lunch had to lay down. I’m exhausted I’m getting no help. I’ve tried metoprolol but the side effects were bad fludro did nothing.

Had all the testing tilt table says orthostatic intolerance but cardio and neuro dismissed me. I have a referral to electrophysiology I was given a number to call because my referral was more than a month ago they said it was the drs office. It wasn’t it was the referral line my case hasn’t been triaged and what’s making it complicated is because of my syncope episodes. Syncope is a diagnosis in my chart OI isn’t in my chart.

23F, taking 2mg slow release melatonin for insomnia and was wondering how those with POTS and/or IST felt if they took this too. I'm already on Mirtazapine for sleep which helps but the melatonin is meant to help actually bring my circadian rhythm back to normal sleep hours since I cannot fall asleep before 3am, and was wondering if anyone had good or bad experiences (side effects) with melatonin.

Of course not everyone reacts the same to every medication, but I saw the 1 in 100 might experience chest pain warning in the side effects area and now I'm not feeling as confident.

So I've had a lot of issues with my stomach for some time now. Diagnosed with dysphagia and GERD after a lot of tests coming back normal. This all started with stomach pain, bloating, and shortness of breath after eating.

I have another GI appt next week. I've been having a weird thing where just a few minutes after eating, my entire body temp or blood pressure seems to drop. I get so cold and start shivering. Then later on, I will get hot flashes. Sometimes I'll feel like I'm going to pass out and my heart starts racing during these episodes. I don't have any issues with blood sugar or diabetes that I know of.

I get lightheaded often due to my orthostatic hypotension, but never have these other symptoms and never after eating. This is all new.

Any ideas?

Medication and non medication and lifestyle

I’m not exactly sure what is going on but my bowels have been really messed up for about a month now. Usually I would go about twice a day but not I am LOCKED UP and laxatives only make me feel worse and don’t produce movements. The ONLY thing that helps is warm prune juice first thing in the morning and then I can have a movement or two but in the evenings I get a huge flare of chest pain and squeezing sensation in my limbs because I need to poop but the I sit down and it won’t come and I can’t bear down cause it will intensify the chest pain and my prune juice only works first thing in the morning so would love any advice for something to take later in the day that could help because I’m tired of being hella symptomatic and feeling like I’m dying just because my body is trying to excrete waste and physically cannot.

I suspect I might have gastroparesis or my endometriosis has started to grow on my bowels but I am losing it and my GI is of no help whatsoever. Never thought I’d be asking the internet for poop help lol.

So I went to the cardiologist to get a heart monitor placed. In the waiting room, I was the only one under the age of 60, I’m 22. That’s totally fine, but this is relevant later. Once I had it placed, they said that I shouldn’t shower for 24 hours. Given that I had a full day of classes, I didn’t wanna not shower. So I asked the tech that placed it what people usually do in this instance. She really didn’t know. It occurred to me a lot of people who get heart monitors usually are older people, and tend to be retired, so it doesn’t entirely matter whether they go a day without showering. I don’t know, it’s not that they did anything wrong, but I always feel out of place when I go to the cardiologist because they just don’t really know how to factor in the logistics of being a younger person, who’s like not retired.

And how long does it last

Yesterday after a 3-4 months battle with what felt like I was dying, I got diagnosed with IST. I thought it might’ve been POTS, but I’d get pre-syncope just sitting too. It felt like my body was failing. It had made me mostly couch,bed and wheelchair bound. It was miserable. Especially around my period. I’d have to plan my month around when my period started, and for two to three weeks i wouldn’t be able to do much.

On top of this I am in college classes and living on the dorm. I had already registered for the dorm before i had issues, and I hate driving.

This morning I started my first dose of ivabradine. I was skeptical because I was starting my 5 mg ivabradine dose and stopping my 25 mg metoprolol dose, which I felt already barely worked anyways.
Wow I was wrong. I’m about to start my period, so I was flaring. Chest pain, feeling sick, faint, headache, anxiety, yknow how it is. I’m about 1-2 hours it felt like I had my life back. I could walk around and my heart would be normal, I could stand, and I felt normal. Zero chest pain whatsoever. I maybe had like one heart palpitation.

My mom said “do you wanna go shopping” and for the first time in months, I said yes. I was so happy. I’m still happy.

Now the ivbradine has wore off and I just took my night dose. My hr is higher now, but I’m still not getting those miserable symptoms.

Hopefully it stays like this, I know my metoprolol seemed to make me feel better at first, but not THIS MUCH BETTER. I feel like if it stays this way, I can have my life back. I’m very lucky to have such a great cardiologist.

I’ve been dealing with symptoms that seems to be associated with a flare- up of old post-concussion syndrome following a June head bump. My absolutely worst feeling seems tied to adrenaline-like dumps that happen both tied to circadian rhythm (around 4:30AM consistently) and then randomly throughout the day. My symptoms are not postural related and my heart rate doesn’t seem to spike, but it feels like my heart is POUNDING. I also get head swimmy, crazy panicked feeling, internal shaky feeling, and have to engage in shallow breathing.
I’m exhausted from disturbed sleep, feel like crap 24/7, and have periods when I feel like I just cannot take it anymore.

Does anyone have a similar non-POTS condition, without tachycardia? Have you found relief or treatments?
I’m trying to do visual / vestibular PT and walking to exercise and get HR up then down. I don’t know what else to try. I also feel very alone because my symptoms don’t seem to fit into any of the 15 types of Dysautonomia that pop up as I desperately doom scroll.

This morning I was woken up to a slight twinge in my chest follow buy a whole high heartrate episode! I dont have SVT, I have POTS. But why in the actual hell did that happen to me?

Lasted maybe 5 minutes, couldn't tell you because I was crying and afraid as per usual.

Hi — I have MCAS which has also led to the development of dysautonomia. I was diagnosed w dysautonomia- jsut umbrella diagnosis, I don’t have classic POTS. But now that I am more aware of what’s going on in my body, I have noticed how dysregulated my nervous system feels. A simple task of driving feels so overstimulating and I feel like it takes me forever to get back to baseline. Work stress stays in my body and mind for hours.

Does anyone have any tips for nervous system regulation? I tried primal trust brain retraining but was hard for me to commit to and felt like a reminder that I was sick.

hi all! curious for those who were able to return to exercise what your experience was like. i am used to working out 5/6 times a week and after this all i went down to nothing. i mostly did weightlifting and cardio, but now when I do lunges or anything even with light weight i feel dizzy and tense in my neck and jaw.

what did you introduce first and how was your experience? any tips you have? i am feeling a bit anxious about returning but i know its time to start and just need some assistance and support :)

I will get an adrenaline dump and we pacing and tachycardiac and have an oral temp anywhere from 99-101f but then when the adrenaline dump ends (within 1hr for me) my temp is back to 98.

Anybody else?

I wasn't sure if I should post here or r/POTS, alas, here I am!

About 6 months ago, I started feeling way worse than usual, with the primary complaint being crushing fatigue, no energy, and an increase in POTS/dysautonomia symptoms.

3 months ago, a lab test revealed that my ferritin is a whopping 7.

I had to undergo some unrelated medical procedures after that, which got a little complicated, but I'm cleared now and scheduled to go in on Friday for my first iron infusion.

....I then made the mistake of reading up on all the possible complications related to POTS, hEDS, and (borderline/mild) MCAS when my one remaining brain cell took the day off.

Could anyone share their iron infusion success stories? Or at least help balance out the dread and anxiety with a bit of optimism?

That’s really it. I get one thing under control, and then another thing pops up. Massive flare up, get it under control, then I’m suddenly severely anemic out of nowhere.

I just want like one whole month of feeling medium-okay and not having a new symptom pop up. I’m missing so much time from work for doctors appointments that I’m constantly behind and playing catch up, which stresses me out, which makes everything worse. But I can’t take extended medical leave, because I have so many medical bills any pay cut would ruin me.

I just want a break. One month of not getting better in some areas but also worse in others. One month of not needing to google anything to see if I need to go to the ER or wait for my doctor to have an opening.

I’ve accepted I’m not going to feel “normal” again, I’m not getting back to where I was before I got sick. But I’d like just a brief time where I feel stable.

No need to respond, I just needed to shout into the void for a bit. My cats are sick of hearing about it.

I (18 M) recently developed stomach pain, shortness of breath, tachycardia, and brainfog for the past three months that seem to worsen when standing up. What caused my symptoms don’t have a clear explanation but me and my parents suspect it started after a viral infection. The other day, I took a tilt table test and my heart rate consistently stayed in the 140s during the 20 minute test, meaning I fit the diagnostic criteria for POTS; however my doctor told me that I couldn’t have POTS because my blood pressure didn’t drop during the test. At the end of my test I was so tired and my brain felt like mush so I Just accepted my diagnosis of inappropriate sinus tachycardia. I’m not the type of person who questions specialist, nor am I professional myself; but I’m generally healthy for someone my age and before I got sick I was able to work as a food runner for 8 hours a day. For me to have unexplained orthostic intolerance out of nowhere doesn’t make sense to me. My question is, what should I do? Should I call my cardiologist and see if he could reconsider or do another test? Could I share my results with my primary doctor and tell her my concerns? If I don’t have POTS, could my intolerance be caused by another condition?