Does Anyone Else Experience This?

[mgr268]

Hi, I have had POTS for 8 years. I suffer from orthostasis, autonomic neuropathy including intestinal dysmotility (rapid small bowel and inertia of large intestine) this has resulted in malabsorption of multiple vitamins (B12,Vit D, calcium, folic acid, ferritin, and fat malabsorption). No one can figure this out and I am unable to get them back to normal through supplementation. I had rickets and multiple broken bones. I was just diagnosed with Ehrlos Danlos and am seeing a geneticist at the end of the month. Despite all this I am highly functioning and am able to lead a "relatively" normal life (at least it looks normal to others).

My question is I have been having these "attacks". They were only happening at night but I had one during the day yesterday. I will start to feel bad and abruptly be awaken from my sleep. I will feel as if I am dying and having a massive heart attack. I will have chest pain and sweating and dizziness at the same time my stomach will be gurgling and feel as though it is moving. After about 20 minutes it will pass. I believe it is some kind of autonomic reaction to my bowels moving or spasming. It scares me to death and makes me scared of when the next one will occur. I have not determined a trigger.

Does anyone else have this kind of "attack?"

Everytime I go to the Dr. I always ask if they think its my "heart" etc. They blame everything on the POTS. I had a calcium score of "0" 6 years ago so they tell me it is highly unlikely to be any kind of heart issue

I have not met anyone else with POTS but would love to know if this is something others also experience.

Thanks

[taynben]

I was recently diagnosed with POTS. I experience something similar, but not exactly the same. I will suddenly wake from sleep with extreme dizziness. I'm often sweating, but don't have chest pain or the stomach issues. My extremities are really heavy and tingling. My bp is usually 84/46 with a pulse of 46-60. I have to make myself stand to raise my bp to a normal range(and unfortunately my pulse spikes too high). Once I lay back down it starts all over again. Have you checked what your bp or hr are at when this happens? I hope you can find some answers.

[lejones1]

The first year or so I had POTS, I had some attacks somewhat like what you'd describe. I would get really dizzy, horrible palpitations, start trembling like a full body tremor, flush red, and had this weird sense of doom...it wasn't like a panic attack, but when they happened it felt like I was dying or something. I had one in front of a nurse at a neurologist's once and she freaked out, said she'd never see anything like it. I didn't get stomach symptoms from them, although I didn't start getting POTS stomach problems til later. Like you said, mine would pass after 20 minutes or so. They became less frequent and then just disappeared.

I think you're smart not to immediately trust that's just autonomic. I've had too many doctors blow off symptoms as "just POTS" to avoid further investigation. So if you really feel it's not just POTS, then don't stop asking for tests. But if everything else seemed ruled out, it wouldn't surprise me if what you're describe is just some sort of autonomic flare. I am continually amazed at how many bizarre symptoms the autonomic nervous system can cause.

[MomtoGiuliana]

I also used to have symptoms like lejones1 describes. I was told they were panic attacks, but I didn't FEEL panicked, I felt physically awful. Sudden palpitations/rise in heart rate, sweating, dizziness, flushing, shaking. It would last about 5 min. or less.

I also get palpitations (still) that are definitely in synch with my digestion. My palpitations are the worst, usually, from about one hour after I eat for another hour or so.

[Friedbrain]

Yup! I used to have them periodically when I was taking a nighttime dose of cortef (5mg). I didn't know better, so took it right before bedtime, which was around midnight. That's too late! I have not had them since I stopped taking a night dose-only positive! (Had other problems since then)

They were very autonomic in nature. I'd wake up w a start and tachycardia, tingling and nausea, flash if heat then my whole body would start trembling. The severe trembling would last for about 15, but that may have been because my neuro had prescribed Xanax (v low dose), which may have helped.

I initially had nocturnal seizures in the same circadian pattern-at around 3am, before my period. So I always thought if these as related, if not as severe. I think what happened is that my Bp and/or heart rate drop too low and my body *shocks* itself w adrenaline. I get those still (in fact, earlier this week) but only a sharp jerk awake and my heart'a racing. I think, for whatever reason, the cortef maybe made my body over-respond to the life saving adrenaline, setting off the cascade if autonomic symptoms. Dies that make sense?

[mgr268]

yes, it makes since.

They appear like a panic attack but all you are doing is sleeping.

Thanks for all of your help

[AngieP]

Hi there,

I experience very similar "attacks", and like you I have had them at night and during the day.

Despite living with them for over five years, they still scare the **** out of me. The symptoms you described are almost identical to mine - it starts out with chest discomfort (sharp pains or dull ache over left side of chest), palpitations, and then I feel nauseas, dizzy, and weak. My bowels also go berserk and I need to empty my bladder a lot until I'm passing clear liquid. My face goes pale, or I become sweaty and flushed. Basically my whole body goes into shock - I tremble quite violently, my hands and feet are icy cold, and in the moment it feels like I'm dying. Sounds dramatic I know, but it's as if multiple systems in my body are melting down together. Thankfully, like you the episodes only last 20 to 45 minutes. Although without a beta blocker onboard my resting heart rate can stay up at 120 - 140 for a couple of days.

I feel incredibly washed out after the "attacks" - and after particularly bad episodes my limbs will feel weak and achy for 3 to 7 days.

At first, I thought I must be having panic attacks, but after winding up in hospital in 2011, doctors immediately ruled this out. I was misdiagnosed with SVT (faulty wire in my heart) and they recommended an ablation. But this didn't sit right with me, as my cardiologist was ignoring some of the symptoms that were worrying me the most - weakness, brain fog etc. I said 'No' to the ablation.

Thankfully in March 2013, I ended up meeting an amazing Professor of Cardiology when I was in emergency again at a different hospital. He ordered a number of tests and arranged for me to see a neurologist and I was diagnosed with POTS.

I've tried to work out possible triggers, for me I think the attacks could be related to my:

- Menstrual cycle

- Dehydration

- Over exertion

The night time attacks are particularly bad and luckily rare. Chest pain will wake me from my sleep at around 2am/3am and the cascade of symptoms will begin. It's frightening but I know I just need to ride them out at home. When I'm having an attack, I ask my husband to tell me, 'you're not going to die, and you don't need to go to hospital.' I just need to hear it.

My cardiologist thinks it is an autonomic discharge of some sort. I recently weaned off my beta-blocker (Metoprolol) and only now take it when needed as I'm planning to get pregnant, which is a bit daunting!

His possible theories for the chest pain (the scariest symptom) - small veins constricting in my heart like they do in my hands, maybe coronary spasms. It's hard to know...but he doesn't think it's sinister. The fact that I've lived through so many attacks should give me confidence

I used to have horrific stomach pain too, but since eliminating gluten strictly from my diet for over two years my digestion has improved greatly.

I'm also going to put it out there in case someone on this forum has experienced something similar, that my blood test results in hospital last year showed up with elevated serotonin (just outside normal limit), which resulted in more tests for possible carcinoids. This was ruled out as the serotonin levels returned to normal six months later. Huge relief! I also have mild hyper mobility but they ruled out EDS Type 3.

I'd love to know how you cope with these "attacks" mgr268. I get a bit teary after them, but push myself to continue on with my daily activities and lead a full life.

Thank you for putting up your post - I don't feel so alone.

[corina]

Gald you feel less alone AngieP, that's what I experienced as well when I joined this website and forum. Welcome at DINET!

[TCP]

Yes I have these and I know they are part of the autonomic dysfunction. There is a rush of adrenalin and the heart pounds, you feel sick and dizzy as you are woken up abruptly and feel awful. This came on 8 years ago for me and they are worse when I am stressed.

AngieP....I wouldn't rule out EDS 3 as there is a connection. In my early years I would probably have been told hypermobility and nothing else. The IBS and other symptoms came on with Glandular Fever and ME in 1984. The other symptoms kicked in 8 years ago and now I fit the picture of EDS 3.

Huge relief! I also have mild hyper mobility but they ruled out EDS Type 3.

[artsystacey]

Hi there,

I experience very similar "attacks", and like you I have had them at night and during the day.

Despite living with them for over five years, they still scare the **** out of me. The symptoms you described are almost identical to mine - it starts out with chest discomfort (sharp pains or dull ache over left side of chest), palpitations, and then I feel nauseas, dizzy, and weak. My bowels also go berserk and I need to empty my bladder a lot until I'm passing clear liquid. My face goes pale, or I become sweaty and flushed. Basically my whole body goes into shock - I tremble quite violently, my hands and feet are icy cold, and in the moment it feels like I'm dying. Sounds dramatic I know, but it's as if multiple systems in my body are melting down together. Thankfully, like you the episodes only last 20 to 45 minutes. Although without a beta blocker onboard my resting heart rate can stay up at 120 - 140 for a couple of days.

I feel incredibly washed out after the "attacks" - and after particularly bad episodes my limbs will feel weak and achy for 3 to 7 days.

At first, I thought I must be having panic attacks, but after winding up in hospital in 2011, doctors immediately ruled this out. I was misdiagnosed with SVT (faulty wire in my heart) and they recommended an ablation. But this didn't sit right with me, as my cardiologist was ignoring some of the symptoms that were worrying me the most - weakness, brain fog etc. I said 'No' to the ablation.

Thankfully in March 2013, I ended up meeting an amazing Professor of Cardiology when I was in emergency again at a different hospital. He ordered a number of tests and arranged for me to see a neurologist and I was diagnosed with POTS.

I've tried to work out possible triggers, for me I think the attacks could be related to my:

- Menstrual cycle

- Dehydration

- Over exertion

The night time attacks are particularly bad and luckily rare. Chest pain will wake me from my sleep at around 2am/3am and the cascade of symptoms will begin. It's frightening but I know I just need to ride them out at home. When I'm having an attack, I ask my husband to tell me, 'you're not going to die, and you don't need to go to hospital.' I just need to hear it.

My cardiologist thinks it is an autonomic discharge of some sort. I recently weaned off my beta-blocker (Metoprolol) and only now take it when needed as I'm planning to get pregnant, which is a bit daunting!

His possible theories for the chest pain (the scariest symptom) - small veins constricting in my heart like they do in my hands, maybe coronary spasms. It's hard to know...but he doesn't think it's sinister. The fact that I've lived through so many attacks should give me confidence

I used to have horrific stomach pain too, but since eliminating gluten strictly from my diet for over two years my digestion has improved greatly.

I'm also going to put it out there in case someone on this forum has experienced something similar, that my blood test results in hospital last year showed up with elevated serotonin (just outside normal limit), which resulted in more tests for possible carcinoids. This was ruled out as the serotonin levels returned to normal six months later. Huge relief! I also have mild hyper mobility but they ruled out EDS Type 3.

I'd love to know how you cope with these "attacks" mgr268. I get a bit teary after them, but push myself to continue on with my daily activities and lead a full life.

Thank you for putting up your post - I don't feel so alone.

Hey Angie - I am diagnosed with generalized dysautonomia and I was recently diagnosed with SVT. They are wanting an ablation, but I'm afraid I could have POTS which ablations are contraindicated for. Do you know if POTS can cause SVT?

[Bigskyfam]

Same symptoms here...

[statesof]

Hey bigskyfam, I've had 2 similiar types of episodes. At first when my POTS symptoms got worse I would get almost panic attack type episodes but they would just come out of nowhere and I'd have no clue what was happening I would just feel like my arms were weak and felt like I should have trouble talking but didn't, and get hit with that "feel like I'm dying/ having a heart attack" feeling, and sometimes feel like I was going to throw up, and then 15 minutes later I would feel fine just tired. I'd get those at times if I was pushing my mental limits to far, like I had done a lot of activities throughout the day.

I would also when I was recovering from pushing myself physically sometimes wake up in the night and just have that generalized "bad" feeling, my heart would always feel weird almost like I had a big stone in my chest, or chest pressure or weakness, and it always left me with a really disconcerting feeling like if I fell asleep I wasn't going to wake up again, idk how to explain that but just the way my whole body felt it gave me that feeling.