Does anyone relate to symptoms? Please Help if Possible

[Tryintocope]

Hello all. Ive been searching for someone that has had or has similar symptoms as myself with absolutely no luck so will give my spill here in hopes of getting some feedback.

My life was episode free until I was aprox 26 yrs old (now 38 ). It happened after a very long day of being out in the heat both playing golf and being at Holiday World amusement park. I had had a ton of both Gatorade and Sprite throughout the day. About an hour after the activities were over for the day we were heading to eat dinner and my first set of symptoms started to hit me.

The first thing I noticed was a rapid heart rate then it felt as if my heart literally moved to my head. It was as if each and every pulse was so intense that my skull was going to break. I couldnt really feel any pressure in my eyes or ears just my brain/skull. This continuously intensified and my entire body broke out in a sweat that immediately soaked through all my clothes. Then I started to feel like each and every breath was useless. It was like I wasn't even getting oxygen. I turned the A/C on full blast (front passenger seat) while everyone else in the van looked on in confusion.

One of the occupants was a nurse and had the driver pull into a a store parking lot guessing I was having some type of sugar attack. The whole episode lasted maybe 10 minutes and then I was just really sluggish. She got me an orange juice and crackers which most likely didn't do anything but I passed it off as a sugar attack since I'd never experienced anything like that.

Approximately one year later after a day out on the water with some friends in Florida drinking beer I woke up to the rapid heart beat at 3:00am which evolved to the pulsations in my head, profusely sweating, and lack of being able to breathe. I went and laid on a tile bathroom floor with my head over the A/C register for over an hour with those symptoms. I literally thought I was going to die for sure. The pulsations slowly faded just a tad bit by tad bit at a time then again I felt extremely drained in every sense. It was as if I had just fought for my life on that cold bathroom floor.

The very next night I awoke again at 2:00-3:00am and went through the exact same scenario but that time it only lasted approximate 30 minutes. We had been out on the water drinking beer and fishing most of that day as well.

So after that experience I didn't really know what to think. I had been diagnosed with an anxiety disorder but those feelings were completely different. All I could piece together was that all the episodes had occurred after being outside in the heat for really lengthy periods of time. The two times in Florida I had drank beer but not the first time in Indiana.

Then I had an episode during the middle of the night after a normal day approximately 6 months after the Florida trip. It was identical in every way as the hour long episode on the bathroom floor. I even went into my bathroom floor for the duriation of the event.

I had a few more episodes over a two year span and each one was during the night. They all woke me up with rapid heart beat and lasted anywhere between 10 minutes and a hour.

By this time I was seeing my wife (a physician) and when she experienced me having an episode she thought it was most likely severe anxiety or PTSD ( the PTSD that's a whole different story which can get into if someone wishes).

I had three or four episodes before the big one hit me after being with my wife. One morning I woke up with a bad stomach pain and went to the bathroom. While I was sitting on the toilet I could feel my sensations starting to come on but I also was in the middle of a violent bowel movement.

Then it was the most God aweful experience of my life which has brought me hear. I could hear my wife talking to me but I couldn't wake up/respond. It was like one to two second bursts of being drawn back into my body. It was like I was fighting between coming back and being able to breath and being pulled away stopping me from being able to do anything. These feelings along with the others I experienced are what I'm searching for answers with.

Come to find out I had fallen off the toilet face first onto the floor, broken my nose, and was out for about 2 minutes total before I could signal to her that I could hear her. She called the ambulance and I had all the tests ran which were negative.

Since that episode I've had 3 other trips to the ER and two of the 3 I couldn't even move once I fought my way back to awareness. The EMTs let me try to get off my kitchen floor for over 30 minutes before I finally let them take me on my 2nd trip to the ER. I've always had a literal pool of sweat surrounding me, my neck has always hurt the most and not from falling, coming back to reality after passing out is like a struggle between life and death because of not being able to breath, and being so physically drained that I can't move has happened 3 times.

I've been taking Depicote for a year now but have had an episode recently. It had been 10 months without one.

Any and all feedback regarding any similar experiences would be greatly appreciated!

Bests
Alex

 

[Nakamova]

Hey Alex --

Some questions:
1. Why were you prescribed the Depakote? was it prescribed for a particular diagnosis?

2. Have you seen any specialists for the episodes you describe (neurologist, endocrinologist, cardiologist)?

3. Do you have any other health issues? Allergies? Asthma? Diabetes? Have you been tested for any blood issues or deficiencies?

 

[Tryintocope]

Hey Alex --

Some questions:
1. Why were you prescribed the Depakote? was it prescribed for a particular diagnosis?

2. Have you seen any specialists for the episodes you describe (neurologist, endocrinologist, cardiologist)?

3. Do you have any other health issues? Allergies? Asthma? Diabetes? Have you been tested for any blood issues or deficiencies?

Every time I went to the ER plus many other times I've had multiple tests both with my Family Practitioner and many specialists.

The only positive sign for epileptic seizures was some trace in blood work one time. A slightly elevated level of something but don't remember exactly what it was. That trace along with my history of episodes is why I'm taking Depakote.
My wife also said I had muscle clinching in my right arm/wrist during one and possibly could have had some very slight muscle spasms in my leg during another.

Yes I have other health issues but nothing major. I do have diverticulitis, 8 herniated discs, anxiety, and bad hearing. No other known diagnosis.

 

[Tryintocope]

Just to add as far as specialist... cardiologist, neurologist, and sleep specialist. The blood test showed a high CK level directly after admission to hospital.

And, I do have stomach pain which is followed by bowel movements after each episode. My wife actually just told me to post that since there is an Abdominal Eplilepsy which is very rare.

 

[Nakamova]

A high CK level can be a sign of seizure, but it can also have other causes such as muscle damage or infection or even celiac disease. Still, some of your symptoms (like impaired awareness and muscle control) sound like they might be on the epilepsy spectrum so it's reasonable that epilepsy would be considered a potential diagnosis.

Autonomic changes (increased heart rate, temperature) can be partial seizure symptoms, but the extreme sweating and fighting for breath are less common. If it hasn't already been ruled out, neurocardiogenic syncope may be worth considering. As with epilepsy, digestive issues can play a triggering role. (A lot of people with epilepsy have co-occurring GI disorders like celiac, IBS, or gluten sensitivity). There are connections between diverticulitis and abdominal migraine, and between abdominal pain and syncope.

Do you keep a symptom diary? It might be helpful for identifying triggers or contributing factors. Triggers can take many forms -- physical, physiological, environmental, emotional -- and their effects can be delayed or cumulative. A diary can potentially help you identify (and avoid) factors that are making your symptoms worse.

Other CWE members will hopefully chime in with helpful advice and perspectives.

Cheers!
Nakamova

 

[seagull]

Air hunger.get oxygen stats done when or if happens again.this just personal view but myself would want more tests before Meds taken.sounds like you over breathing that give you similar symptoms when If happens again get paper bag breath in and out of it.
You similar to my husband ectopic heart beat and alcohol sun over extertion will do it.pulmonary lung but one in twenty have that it no big thing but having crap will trigger that,my daughter had one
I not expert by any means but it maybe epilepsy but I don't recognise all those symptoms head aches usually last after seziour I have though heard migraine suffers have those things and that near cousin to epilepsy.but this just my personal opinion which could be off beam

 

[Tryintocope]

Air hunger.get oxygen stats done when or if happens again.this just personal view but myself would want more tests before Meds taken.sounds like you over breathing that give you similar symptoms when If happens again get paper bag breath in and out of it.
You similar to my husband ectopic heart beat and alcohol sun over extertion will do it.pulmonary lung but one in twenty have that it no big thing but having crap will trigger that,my daughter had one
I not expert by any means but it maybe epilepsy but I don't recognise all those symptoms head aches usually last after seziour I have though heard migraine suffers have those things and that near cousin to epilepsy.but this just my personal opinion which could be off beam

Yea I've learned how to properly breathe that isn't an issue. It was at first though as I wouldn't take the time to concentrate.

I haven't had a drop of alcohol in nearly three years nor had an episode after being out in the humid heat here in Kentucky. The three first times that was the only link but that hasn't happened again.

I've had 30 day heart monitoring and multiple heart monitoring tests while in the hospital but never have I had an episode during a test so that's still up in the air. I may do an internal monitor for a year just to see if we can't figure it out. I actually just finished the 30 day test a few weeks ago.

 

[masterjen]

I would tend to wonder about some form of syncope as well. It can manifest in many ways, and an internet search for things like "nocturnal syncopal episodes", "syncope associated with bowel movement" (a type of vasovagal syncope), etc. In case you haven't already go into google scholar and put in a few key words separated by a comma or '+', and see what comes up. I don't encourage self-diagnosis by any means, but the more information you have the easier it is to come up with relevant questions for your specialists.

 

[seagull]

That do sound logical masterjen.he should look into that.Sometimes things happen and you will never know why yes it do piss one off big time but medicen will never be precise science in our lifetime

 

[Tryintocope]

I would tend to wonder about some form of syncope as well. It can manifest in many ways, and an internet search for things like "nocturnal syncopal episodes", "syncope associated with bowel movement" (a type of vasovagal syncope), etc. In case you haven't already go into google scholar and put in a few key words separated by a comma or '+', and see what comes up. I don't encourage self-diagnosis by any means, but the more information you have the easier it is to come up with relevant questions for your specialists.

Right. That was the impressions the drs had when the first couple happened but after the CK level and other symptoms they started to think it was more than that.

 

[drarvindr]

How many episodes did you have before the Depakote? Has the frequency reduced with the medication?
I'm assuming that you ve been extensively worked up from a cardiac standpoint (including an echocardiogram and home ecg monitoring to rule out cardiac causes)
Do you turn red/purple during an episode and feel hot?
Maybe worth doing a colonoscopy / serum serotonin/5-HIAA levels to rule out carcinoid syndrome. If you have diverticulitis I'm assuming it was diagnosed with a CT of your abdomen.
Usually vague abdominal symptoms with diarrhea and headache that responds to anti epileptic medications is likely abdominal epilepsy but this is a diagnosis of exclusion (you've ruled out everything else) as this is extremely rare and unlikely in adults (usually in children and teens). Also usually responds better to oxcarbazepine(Trileptal) than valproate (Depakote).
May also be worth doing a home Holter (30 day monitoring with the ecg hooked up at home) and you can check the ecg during your episode to rule out abnormal heart rhythms.
Hope this helps.

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[drarvindr]

May also want to lay off nuts, seeds, tofu, cheese, turkey, fish, oats and eggs (esp yolks)

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[Tryintocope]

How many episodes did you have before the Depakote? Has the frequency reduced with the medication?

I don't know how many. Multiple episodes that left me in the floor circled in a pool of sweat but only a hand full of the ones that ended in loss of consciousness. I would say I've had fewer episodes since being on it yes but the bad ones that lead to seizures have normally been spread apart by months at a time.

I'm assuming that you ve been extensively worked up from a cardiac standpoint (including an echocardiogram and home ecg monitoring to rule out cardiac causes)

Yes. 30 day home monitor as well but test was normal being that didn't have an event.


Do you turn red/purple during an episode and feel hot?

I do not turn colors but yes I literally soak sweat through my clothes so much that there is standing pool of sweat on the floor.


Maybe worth doing a colonoscopy / serum serotonin/5-HIAA levels to rule out carcinoid syndrome. If you have diverticulitis I'm assuming it was diagnosed with a CT of your abdomen.

Right. That's the thinking now as the CT Scan was used to make the diagnosis.


Usually vague abdominal symptoms with diarrhea and headache that responds to anti epileptic medications is likely abdominal epilepsy but this is a diagnosis of exclusion (you've ruled out everything else) as this is extremely rare and unlikely in adults (usually in children and teens). Also usually responds better to oxcarbazepine(Trileptal) than valproate (Depakote).
May also be worth doing a home Holter (30 day monitoring with the ecg hooked up at home) and you can check the ecg during your episode to rule out abnormal heart rhythms.
Hope this helps.

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Thanks for your thoughts.

Bests
Alex

 

[Tryintocope]

May also want to lay off nuts, seeds, tofu, cheese, turkey, fish, oats and eggs (esp yolks)

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I've never heard that about turkey, fish, and eggs.

 

[seagull]

Sometimes so much heathy food and lots of exercise make you feel like losing will to live.Many things happen. And alto we want explaination but many times we never get it.shit stinks at times