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Anyone Have These Type Of Episodes?


Tammy
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I really hate when I get these episodes, along with having the deal with the normal POTS type symptoms, periodically I get the following episodes:

I usually start to feel extremely weak, and my body feels kind of heavy and I have pressure in my jaw area. Today I layed down to rest as it started and in about 1/2 hour I started to feel this hot/warm sensation in my chest. I was sweating a lot, even the palm of my hands were sweaty. My heart started racing. Then I felt like I had to throw up, but prevented myself from doing so. and at the same time, I had to have a soft bm and I barely had the strength to get to the bathroom to do so. Then I got the chills so bad and continued to for about 20 minutes. My BP was 160/100 and my hr was 130 at the worst of my symptoms. These episodes seem to last for about 40 minutes from start to finish. I end with a bp of 117/73 and hr 74. They leave me completely drained and for many hours afterwards, it's like my body has "aftershocks" and tries to start having another spell... like the warm sensation in my chest, sweating, and chills keep coming back and my bp will start to rise and come down over and over. I'm always scared to go to sleep after it happens even though I'm to the point to passing out from the exhaustion that it causes.

I have gone to the ER a few times due to this and the worst of the episode is gone by that time and it's usually only my BP that is still somewhat high - 130/90 at the time, so they discharge me with recommendations to follow up with my physician for high BP. I've had 2 holter monitor type things in the past 7 years and 1 was for 3 days and another for a month and I never had this exact type of spell while on them, so dr just states I have inappropriate sinus tachycardia - but I don't think these episodes are sinus tachycardia due to the symptoms I get with them are so different.

So looking for advice... since going to the ER costs us about 2,000.00 each visit due to the insurance we have, I can't continue to go each time these happens -- yet our ergent care clinic won't even let me come in when I'm having one as they are too afraid they won't be able to deal with whatever is going on. I'm just not sure what to do and not even sure what's going on.

Has anyone else had these type of spells? They scare the heck out of me!

- Tammy

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Hi! Thanks for the replies. For some reason, adrenaline surges seem a little different and usually don't last as long. Also, no I haven't been checked for pheochromocytoma, but at the last ER visit last month it was something they want to have my reg physician check but said they highly doubted that was what was cuasing these. She hasn't choosen to check for it at this time, but when I see her next month I'll have to bring it up.

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Hi Ernie,

Okay, can you describe your adrenaline rushes so I can have an idea of how I view my adrenaline rushes and maybe this is what's going on. I know every person is different physically, but sometimes it just helps to know of someone who goes through what they themselves do. Today I'm still very tachy and my bp is 130/90 but was down to 99/65 during the night, so something conitnues to be off. Does your adrenaline rushes continue into the next day? Thanks :D

- Tammy

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I used to have strange "episodes" that sound somewhat similar to yours. I would get weakness, heaviness and hot in my body. It seemed like it often happened on the way to the bathroom....but not always. I was actually able to cut down the frequency by going to the bathroom as soon as I felt the need. Another similarity, they always lasted exactly 45 minutes. I would be out, but I could hear. That's the way I knew I wasn't asleep. Otherwise, I was disoriented, couldn't feel anything in my body, couldn't see, speak or move, and turned freezing cold (and others describe me as turning stiff) and sometimes had convulsions. I would come out of it clenching my teeth (maybe your jaw feeling is similar?) and sometimes sore from things I landed on or how I was laying or whatever.

I have no idea what my bp or hr were during those kinds of episodes because they happened for a couple years in the beginning of the illness, and that is a long time ago now. But yes, they really were freaky, to me and everyone around me. I would also see lights, or other strange visual disturbances before....and I would be extremely fatigued after. It never really did me any damage. But I think, like most other kinds of "episodes" that POTSers describe, the body has an adrenalin overload sort of shock reaction, which means high sensitivity afterwards...and that can become a cycle....so it's best to get with your doctor to try to stop them, so your body has a chance to heal.

This is not a medical advice....but, I think that if your episodes are the same as the ones I used to have, going to the ER is useless....not to mention financially draining. It's hard to just let it pass....but I used to get these up to 5 times a day, and nothing more than the episode itself ever happened to me. I had two during a 24-hour halter monitor, and all it indicated was sinus tachy. The times when friends and family pushed for the ER were draining, because sleep is very important for POTS, and the ER means a night without sleep, waiting for test results that mean nothing. But you should talk to your POTS doc about it.

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Yes, I get a similar thing sometimes and it can last many hours. I don't specifically know what it is but laying down in a dark room and hoepfully sleeping is all I know to combat it. Could very well be adrenaline now that I think on it. I too get lights and sort of freeze up... Like I can move if I really put everything I have into it...but it takes literally everything I have... Heart racing, chills/heat waves, nausea.. I find that usually it starts in the AM with a heart rate that just wont come down from 110 or 120 while sitting with my feet up. If I don't immediately go home and pamper then I will be in for it till late into the night.

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I get this too and think it may be due to adrenaline surges. One year before I had my first major surge I would be driving early morning with my friend going to play golf. Into our drive I would sometimes start to get these rushes down my legs, start sweating and have to have a BM. I would oten have a big mug of coffee about a half-hour earlier. Well that was my pre-pots days and when I had my first real episode I found that when I drank coffee the same thing would happen. When I cut to half-caf after the diagnosis the bad surges went away. Sometimes I do get that feeling just sitting around (I use very little caf now) but I don't get the rushes down my leg anymore but immediately after the bathroom visit I feel much better. Also have you ever checked you blood sugar during one of those episodes, I have reactive hypoglycemia due to the POTS and the effects are very similiar. One day I almost couldn't make it to the bathroom I did, went to the kitchen and drank some OJ and the sweats were gone in 5 minutes and I felt great. Just fishing a bit but I hope you feel better.

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masumah, Tammy,

check this out. There is a form of noturnal seziures.

http://www.epilepsy.com/101/ep101_symptom.html

I did look at the link, and the teeth grinding thing is uncanny. But, at the time when I was having the most severe of these episodes I saw a neurologist. He seemed like a bit of an airhead, honestly, and kept insisting that I was having a conversion disorder post-miscarriage and need to deal with my grief. I told him this started before I even knew I was pregnant...made not a blink in his eye...he just kept referring me to a psychiatrist friend of his. Gosh...that guy was so annoying. But he did run an EEG (which was normal), and told me that epilepsy presenting at my age (late teens early twenties) never presents with daily siezures (rather, it is like a once a year siezure if it starts at that age). I do think it's worth it to see a neurologist anyways though, since that one was flakey, and since I have some other questions about the dysautonomia.

Thanks :)

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Thanks for all the replies and advice. I guess they could be just severe adrenaline rushes. I find it interesting that even after one of these episodes has mostly resolved, it takes me at least a day to recover from the exhaustion and also my BP stays mostly at a higher level. It has slowly been going back down throughout today and into tonight which is going on almost two days since the worst part of this episode. Are they suppose to have such a long recovery period? Usually when I get what I consider my regular adrenaline rushes, they are shorter in length and once they are over, I feel okay as to my "normal" potsy self. Not so drawn out like these tend to be.

Tammy

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I have had these episodes for a few years now and i had the hardest time explaining them to anyone and you describe them to a T..... my neuro just assumed I was having seizures so he put me on this very expensive med. and now that i have progressed to the point that i am bedridden because of the POTS, I realized that those episodes this whole time was my symptoms when my hr goes up so high and stays that way for a few minutes. my body goes into some kind of crisis and the neusua and bm thing is when it all happens and that is when i feel like my body is having a seizure and it last sometimes 30 mins. or more unless i make myself lay as flat as possible then it goes away much faster.... this episode is what happened to me at 2 of my tilt table test.... they are horrific. please take care of yourself and when this starts to happen get your body as flat as possible and see if it is not as bad for you....good luck and let me know if it works

hugs>>>lisa

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I can not begin to tell you how bad I experienced those episodes a few years back.. I would experience a weird disorienting feeling and then a rush of severe heat would rush from my feet to my head. My heart would begin to pound and race uncontrollably and I would feel the urge to vomit. I would have severe diarrhea and was left so fatigued. This would last for about 1 hour and then leave me feeling very ill the whole day.. Always happened at night when I would awaken from a sleep. I went to Dr Grubb and was told it was hyperaderengic POTS (MVPS). my body over produses adrenaline and over reacts to it.. Very uncomfortable feeling... Hope you feel better fast

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masuemh,

I have a feeling your conversion disorder, is the same as my DX of puesdo seizures.

inaccurate! However I'm not saying I think it is epilespy. Something to keep in mind. The body is enormously complex. You might ask your neuro about getting a "SPECT" scan. I got one. I was sent to a phychiratrist with puesdo seizures, he ordered the SPECT Scan checking for epilepsy. From that of course I deduce its heplfull to DX epilepsy.

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Hi I get these, although not as severe as you. I take an extra beta blocker until it goes away. You may want to check with your dr about when to go to the ER. It's probably different for each person, but I was told not to go unless I had a high HR that stuck around for a couple of hrs and didn't go away with extra meds.

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Wow, this is obviously a very common thing we have all gone through. I wish that none of us had to deal with these, but am very thankful to not be alone in it, and hope that someday a cure will exist for all these awful struggles we go through.

- Tammy

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Hi Tammy,

I get these same episodes, wish I could find my previous posts on this and link it for you. I'll keep looking...

For me they can start by a feeling of uneasy, I notice my heart pounding though it is not fast yet. It starts to go faster, I get the chills, my teeth chatter, my palms sweat, I start to feel pressure in my head and face. Run to the bathroom usually with a bm also and usually more than once(sorry for the details ;) My rate can go up as high as 150 or stay in the low 100's - 120's, I never know. They usually will last about 45min or so, and I usually will take a little beta blocker when it starts too. I feel tired and drained the rest of the day, after all that adrenaline floating around the systems keeping you on edge, it is not surprising. I can feel the release in my body when it is over. My knees will feel weak, arms tired etc. I can also feel like this the next day too.

Sometimes it happens off and on for the rest of the day, like mini rushes.

Sound similar? :blink:

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  • 11 months later...

OK, responding to old post since SOME of this is familiar to me. My 'episodes' are by for the WORST part of POTS -leaving me crying and not wanting to live anymore. That tells you how scary they are. Mine feel like (some are minor only a couple minutes, some are major up to 2 hours w/ poor sleeping later that night): suddenly hot (or heat surge), then weakness that I cannot describe - I CAN do things but feel like I am in danger and need to call someone to help me take care of my 18mo old, maybe a bit shaky, fatigued, sometimes need to bm - but not usually, need to walk around house and sit (and smoke - no lectures pls) intermittently until it's over. The only thing it feels a bit like is hypoglycemia - BUT I have NO appetite during these episodes. Today, it was brought on by a short, slow walk around the block. Felt fine, then when I got in and started making lunch for son, the 'episode' hit me. It is sometimes so bad, I feel I should go to ER, but can't do that all the time. It always passes. I took a Klonopin this time since it's so distressing. Sometimes I can do a lot without getting one of these. During it, I sat down to take hr/bp. They were very normal for me hr 96 (normal for me) bp 117/21 or so. WHY DON'T MY VITALS REFLECT WHAT I AM FEELING? WHAT EXACTLY IS CAUSING IT THEN??????? As I said, these episodes are SO scary that I always end up crying after they are over, and literally thinking I do not want to keep living like this - I say this just so everyone understands how bad they are - and how can I tell myself - oh, pots is not life-threatening when my own body tells me I am in danger??????? sorry for the rant

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As I said, these episodes are SO scary that I always end up crying after they are over, and literally thinking I do not want to keep living like this - I say this just so everyone understands how bad they are - and how can I tell myself - oh, pots is not life-threatening when my own body tells me I am in danger??????? sorry for the rant

when you think to yourself "I do not want to keep living like this", you are sending a message that there is danger. You may not be aware that THAT message is one of mortal danger, so even tho I understand what you mean you must change that thought to something less fear inducing- like maybe, living this way is distressing but not dangerous.

Secondly (and very important) it is the Dr. whose message is "POTS is not life threatening" you should be telling yourself. No offense but you are not the medical expert.

Hope that helps......

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OH man, i know this is an old post, but it is good to know others have this too!

last night was horrible! the sweat, nausea, tachy, rushing to the toilet for soft BM.... almost feels like there is something bad inside me that my body is trying to get rid of... anyone feel like that? i feel i need to go to the ER to get IV fluids, but have no ins. or $ so i have to wait it out, and eat a whole sleeve of saltines and sip water... it continues for a while, repeating the BM and sweating nausea and tachy while my bf snores away loudly not caring... i do know he probably cares, just doesnt understand... and has to work EARLY so i cannot blame him...

i just truly feel like dying when this happens it is so scary and frankly, it *****! finally i think it settled down maybe 45 to an hour, and i fell asleep, THANK GOD! :(

any remedies or advice? i am going to look into the adrenal surges like many of you suggested in the past, and also the hyperaderengic thing sounds likely... although i wish i would have had the energy, to take my bp hr while happening... but could not think of doing it....

:) why do we all go through this and have no sympathy from the normal people in our lives.... it *****! if you havent experienced it, you have no idea!!! that is all i keep telling myself of my family for not being able to understand, or empathise... GRRRRRRRR!

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PAT57!

That was an interesting link!

I wonder if some of us are having a seziure and not realizing it. Just a thought, something to think about.

The reason I ask is because I wonder why the drug klonopin, and phenobarbitol works so well for us sometimes.

In the 80s when these type of attacks first started happening to me, I took phenobarbitol, and in 10 minutes it was like the attack never happened. Then I just took a low dose to avoid getting them. I took it for about 6 months, and after that I didn't have any significant attacks for about 5 years. In 1990 I was put on beta blockers when the attacks started again, and also given xanax. I took the xanax for about a year.

After crashing in 2000, and then diagnosed with POTs in 2001, I started taking klonopin in late 2005 because I got tired of fighting off the attacks. The attacks weren't as strong because of the beta blockers, but still very upsetting, so I started taking a low dose of klonopin. The attacks are exhausting physically and emotionally, and I felt there was no sense putting my body through that if I could avoid it.

Take care,

Maxine :0)

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